2nd March 2022
I met friends Gillie and Dave in the village and had a long chat. They've both been treated for cancer and Gilly's is ongoing. She told me how successful her acupuncture sessions had been and the idea appealed to me. Now that I'm no longer receiving any treatment from the hospital maybe I should look for something suitable to fill that gap in my regimen. The cancer charity, Yeleni, offer eight free sessions to cancer patients registered with them and today was the first of eight free sessions. I think I'm on much the same wavelength as the acupuncturist and we agreed to start by detoxing from the chemotherapy. I had already started to take one extract of Milkthistle capsule per day to detox the liver.
I had a telephone appointment with my oncologist and confirmed my decision not to continue with chemotherapy in any shape or form. He will arrange a face to face consultation.
11th March 2022
Second acupuncture session to help with detoxing. I'm getting on well with my acupuncturist. I think she's pleased to have a client who takes an interest in the treatments beyond the possible outcomes. There is a relationship with with the Chakras in Ayurvedic medicine, which I know a little about and of course the concept of acupuncture is closely related to Taoist philosophy which I've been reading for several decades.
15th March 2022
I spent 45 minutes on the phone to a very good nutritionist who answered the questions I had and gave me good advice on detoxing and supporting my immune system. Consequently I'm taking two milkweed capsules every day to detox my liver. I'm also taking a pre-biotic capsule made from seaweed twice a day and, as a result of the nutritionist's referal to a mycotherapist, I take two reishi-cordycep mushroom complex capsules twice a day to support the immune system. We also received the delivery of excellent organic fruit and veg from PiktFresh. Brilliantly packed, delivered on time and far tastier than the supermarket stuff we've been subjecting ourselves to.
A Facebook friend in America recommended the book Radical Remission, by Kelly Turner. For her PhD Turner travelled the world researching terminal cancer patients who had experience radical remission and healers who had been involved in the radical healing of cancer patients. In her book she reports on the nine actions that all her research subjects had in common. Nutrition and physical fitness are important but the other seven practices are to do with psycho-spiritual activities, like human social and physical contact, meditation and loving intention. At the same time I've discovered that the Heartmath Institute scientists have shown that loving intention alone can change the conformation of DNA, which accords with what I found out about changing cancerous cells back to normality. I'm also exploring Lynne McTaggart's work on Intention. Many years ago I read Norman Vincent Peale's famous book, The Power of Positive Thinking, and Napoleon Hill's, Think and Grow Rich. (The latter I rejected because it was too materialistic.) More recently I'd been impressed by The Alchemy of Healing, by Farnaz Afshar and this led me to The Law of Attraction by Esther and Jerry Hicks. All this is being supplemented by scientific research into how the mind and consciousness affects matter and well being from The Institute of Noetic Sciences, The HeartMath Institute, Humanity's Team and many other organisations.
During a time of quiet contemplation, I had an interesting experience. I had opened Lorin Roche's Radiance Sutras on Sunday and read this:
'Live for a few days in the meditation, “I am immersed in the flame— The flame of time, The flame of love, The flame of life. The universal fire flows through me.”'
I'd then held that in mind for a few days, though not fastidiously so. One morning I opened myself to the silence and a warmth filled my head. I sensed it moving down my body until it got to my solar plexus where it seemed to get stuck. It couldn't get passed this place for some reason. Then I realised that this was the area that from my earliest years I have experienced fear. I also discovered that in Chinese medicine the kidney's are associated with fear.
I later reflected that one of my earliest vivid recollections is of a recurring nightmare I had aged around four. I dreamt I was walking up a narrow path towards a blanket of darkness. Either side of the path large snakes were standing on their tails and looking down at me. I had to speak nicely to the snakes to stop them from hurting me. That dream took place in the middle of the second world war. We were living with my grandparents and great uncle in an end-terrace house in Clevedon, Somerset. Sometimes my Aunt and Uncle would be with us on leave from the RAF. So I was in a confined space surrounded by adults who were all suffering from the tensions of war. Shortly after this, during my early school days there had always been a lot of fear in my life. Teachers in those days were often harshly strict and some of them bullies. My secondary school experience didn't improve matters. Although I'd passed the 11 plus and could have gone to grammar school in Somerset, my parents were preparing to move to Bristol. I failed to get a place in Bristol Grammar School and was sent to a secondary modern school, for reasons maybe only my mother knew and never disclosed. There were plenty of other grammar schools in Bristol I could have gone to. I was given the opportunity to take the exam to go to a Secondary Technical school aged thirteen and got a place. That turned out to be disastrous. Here was a youngster good at English, History and the like having to study physics, mechanics, algebra, trigonometry and practical stuff like metal work, woodwork and technical drawing. I hated it and failed at most of it. I left school early, had several unhappy jobs then was called up for National Service in the Army. After six months, in order to support my new wife and baby, even though I hated the army, I signed on for regular service for six years. Thus the first half of my life was pock marked with periods of fearfulness, though I was always able to handle it; in other words, ignore it or suppress it. It didn't stop me achieving a certain level of success in most of what I did.
Then, in 2009, came kidney cancer and seven years of operations and more than that living with its threat.
16th March 2022
I shared some of this a with my acupuncturist and she agreed: there seems to be a blockage at what Ayurvedic medicine calls the third chakra, which is associated in that field with the sense of self, the ego. I already knew that when the ego is threatened it responds with fear, which tied in with what I now knew about the kidney area. So instead of what she'd planned for me my acupuncturist started work on that area. During the treatment I lay visualising the energy (fire) flow moving down through my body and could sense it moving down my right leg to my foot, but not my left leg. She did something to my feet at the end.
17th March 2022
In the morning I attended the launch of the Herefordshire All Cancer Support Group at Hereford. I had started such a group when I was a volunteer for Macmillan Cancer Support some years before. It never got the support that it deserved and eventually failed. I am a little more optimistic for this new group which has a young and enthusiastic leader. However, I was shocked to find that very sugary iced cakes were being offered the cancer patients. Cancer cells absorb seven times more sugar that healthy cells—they thrive on it!
I felt no change immediately after the acupuncture session, in fact lastnight I didn't sleep well. In the morning I did have an unusually intensely blissful period of meditation. Later, after the cancer support group meeting, I'd arranged to meet a friend for lunch. As I was early I sat in High Town for a while and, once again, fell into a most delicious state of total bliss. In 'When I Walked Out One Midsummer Morning' Laurie Lee described an experience of peace in Spain like this: “Never had I felt so fat with time, so free of the need to be doing.” This sense of bliss wafted through me several times over the next 48 hours.
19th March to 3rd April
Then came anxiety. I wasn't anxious about anything in particular, neither was the experience severe, but there was and has been a low level background of anxiety lurking in me for some weeks. It may be a side effect of detoxing or maybe having shone the light of consciousness on the area that resonates with those 'knots' of fearfulness that are stuck within me I've disturbed a little hornets nest. I have to learn how to completely let go of any remnants of bitterness that may remain in me. This must be through forgiveness – both of others and of myself —but that's only one aspect the the problem and solution.
4th April 2022
I've now started a wholeness regime. It may well need some fine tuning or even radical changes as I progress. I call it wholeness because I think that is the purpose and goal of life/chi/prana. Healing is a symptom of that rather than the objective. After all, healing is only needed when wholeness is deficient. Maybe wholeness is present when the body, mind and True Self are in harmony – resonating sympathetically or at the same frequency as life/chi/prana.
My wholeness regime consists of:
1. Diet: We're eating largely organic food to eliminate, as far as possible, non-bio toxins from pesticides etc. which the body has not evolved to handle adequately. We found an online supplier of organic vegetables, which supplies most of the fruit and veg we need. We can choose what we want and it's delivered the next day.
I've drastically cut down on sugar and milk and am drinking a lot more herbal tea and spring water, usually with a slice of organic lemon. Instead of milk I use oatmilk, but sometimes I cheat and add little plant-based Elmlea cream. This brings the oatmilk nearer to the taste of actual milk and it loses some of the clagginess that it has when used in hot drinks.
I'm also fasting 24hrs each week from Sunday lunch to Monday lunch. I started by fasting from Sunday supper to Monday supper but read in The Week that midday to midday is better. Apparently research published in Nature Communications reveals that this not only aids weight loss but improves insulin sensitivity, increases gut microbial diversity and ameliorates inflammation. This must take some pressure off the poor old overworked immune system.
I leave tap water in jars overnight to allow the chlorine to evaporate before using it to make tea.
2. Supplements: Twice a day I take one milk thistle capsule to detox the liver, two Reishi-Cordyceps mushroom complex tablets to support the immune system and one prebiotic capsule derived from seaweed to promote good a gut biome. I also take one high level (20 billion) probiotic capsule once a day with breakfast. I wash these down with a glass of spring water. All this in addition to my daily over-seventies vitamin pill.
3. Exercise: I walk three miles several times a week and usually go out with the village walkers on Saturdays. I also do a little (sometimes a lot – sometimes too much) gardening.
4. Spiritual Practices: I spend an hour or so reading, contemplating and meditating first thing every morning. In stilling the mind I find what I call a vivacious silence. Sometimes I do a breathing exercise which involves breathing in to each chakra in turn and in breathing out moving to the next chakra. In a state of calm I sometimes find myself 'receiving' understanding which I have occasionally recorded as a contemplation. It is the calmness of mind that is important and the sense of well-being. Often, when I'm in this state, I focus my attention on those I know who are in need to share this life energy with them.
I'm continue to read Kelly Turner's book, Radical Remission and feel very much in tune with her findings. Some of the examples make me realise that the main truth in all this is allowing the healing energy to flow unimpeded. The way this happens doesn't seem to be important. Some find religion helps, some find it hinders. Some healers have been shown to be not very pleasant people. Those who have found healing have done so in a multitude of ways but this one message keeps coming through: keep the mind out of the way and focus on allowing what can happen to happen; that seems to the be key. Bill Bengston emphasises this in his book Energy Healing. He developed a repetitive imaging technique which keeps the mind occupied in a positive way so that the healing energy can flow.
Intention is a word that keeps cropping up. I watched on online interview with scientific journalist, Lynne McTaggart. She also referred to Kelly Turner's work. Cell biologist Dr. Glen Rein showed that loving intention can change the conformation of DNA. According to Bengston the intention must be focused on a real event. 'I want to get better' is not specific enough. So my loving intention is to receive a phone call from my oncologist and his saying that, to his great surprise, my latest CT scan shows no sign of cancer. However, I'd be happy to die with it rather than of it. I believe that the universe is full of unfulfilled possibilities. Life works in us to realise those possibilities that pertain to our well-being. This is what I call 'the best that can be principle'. Life always seeks the best but, because it operates non-violently, which is the principle of love, it does not impose its will but achieves 'the best that can be' under the circumstances. This understanding comes from the Tao Te Ching and the Sermon on the Mount. As I see it my loving intention will influence 'the best that can be' and help to draw all the essential and synchronistic possibilities into realisation so that life's purposes can be fulfilled.
5. Love: Kelly Turner shows that being loved is an important aspect of healing. So I rejoice in the love of Liz and my family and friends. That the Interfaith group had a special healing session for me was a great blessing as was the succession of visits from family when I was on chemotherapy. We need a lot of hugs, eye contact and loving encouragement. This is something to contemplate daily with much gratitude.
6. Creativity: One of the nine elements for successful remission that Kelly Turner cited is creativity. I'm fortunate to have some ability in writing and have been busy over these last few years producing books. I've got two in the process of editing right now, a book of poetry ready to go and my book on the ego to revisit and maybe re-write. I'm also producing a little poetry now and then and might even get back to my computer art some time. I'm sure this positive and fulfilling activity is helpful to my recovery.
13th April 2022
I had an appointment at the hospital with my oncologist. I told him face to face what I had decided and gave him a copy of my regimen including my blood pressure readings from October to date. He made no attempt to persuade me otherwise and agreed to monitor me with CT Scans and blood tests.
14th April 2022
I met a friend for coffee. We got talking about anxiety and fear and I described some of my recent experiences. She asked a highly salient question: “Whose anxiety is it?” I remember that some time after my mother passed away my father told me that he'd suffered with nerves all his married life. Since Mum had died, he said, he'd realised he's been suffering with her nerves. I have been reflecting that the earliest source of anxiety I had had was when I was four years old. It would have been around 1943, the middle of World War II. My family had moved in with my maternal grandparents in Clevedon, a seaside town in North Somerset. My great uncle was living there also and sometimes my aunt and uncle would come home on leave from the RAF. So I was living in this overcrowded house full of adults during one of the most dangerous times in history for British people. I had dreamed repeatedly that I was walking up a narrow path toward blackness. Either side of the path were huge snakes raised up and towering over me and looking down at me with their forked tongues flickering. I had to speak kindly to them to keep them from hurting me. I remember that image as clearly now as I dreamt it 78 years ago. Although I don't remember feeling anxious at the time, something was bubbling away in my subconscious. I don't know whether this occurred before or after I had meningitis. During that illness, for which I was nursed at home by my mother and visiting district nurses supervised by our GP, I must have been surrounded by much anxiety. A year or so later I broke both bones in my right forearm. I can remember considerable anxiety during my many hospital visits.
After the war we moved to a large house in the nearby village of Claverham. My grandparents had inherited it from my Grandmother's brother in law. There was a large garden ½ and acre in which was a small orchard, a workshop, two large greenhouses and a wall nut tree. Plenty of scope of an adventurous small boy. But during that time my father suffered illness and was hospitalized. My mother went fruit picking and potato picking to make ends meet. Again the house must have been filled with anxiety although neither my sister nor I remember experiencing this. We were always made to feel secure, though life must have been quite a struggle for our parents.
So whose anxiety am I suffering from? Was I perhaps conditioned into an anxious state in those early days. Having a bully of a headteacher at junior school didn't help. Yet none of this inhibited me particularly at the time. I had enough confidence to appear on stage in school and community events. However, my education was a bit of a mess and I left school without taking my exams to follow my father into the motor trade. This was a disaster and I got sacked after two years. I helped form a vocal harmony group and we went pro in 1959, but I hated the tension of it all and used to break out in a rash after big stage appearances. In that November I was called up into the Army for National Service, which was terrifying for me. Then I got married and signed on to support my wife and child, even though I hated the army. I was 33 before I got into a job in which I could fulfil my potential but was made redundant 18 months later. Eventually I got into the Careers Service where I had a successful career over a period of 17 years. I took an early retirement package aged 53 and was self employed for the next 12 years. At no period in my life had I been without anxiety for considerable periods of time, so it's not surprising that I'm carrying around an underlying sense of fearfulness. Strange that it's taken all this time to notice that this is the case. It's become 'normal'. What I'm realising is that because something is usual it's not necessarily normal, for which reason I am at last dealing with it, though that is proving very difficult indeed.
16th April 2022
I was introduced by friends to a research scientist specialising in cancer. Peter and I met at the village hall and exchanged notes. He has been dealing with prostate cancer since 2012 and as we talked we discovered that our regimens were very similar. In the end he said he didn't think he could be much help to me because, in his opinion, I was doing all the right things. What I did pick up from him was the value of green tea. He drinks three to five cups a day. I tried it. Yuck! I tried it with lemon. Not quite so yuk but still yukish. Then I tried it with breakfast tea and milk. Now that's quite palatable. However, I wanted to cut down on milk and this wouldn't help with that so I now mix one third milk with two thirds oat milk. That's considerably better than oatmilk on it's own.
22nd April 2022
I've been weighing up my options and have been drawn to consider the Ayurvedic path. This arose from the Vedic religious traditions of India over the last 2500 years. Since I have been reading the Upanishads and Bhagavad Gita from that tradition over the the last 40 years I feel I should have some sympathy with the Ayurvedic philosophy. However, I am also conscious that it will not be a good thing to mix too many different approaches in my regimen. My acupuncturist agrees with that but also confirmed that there is a lot of coherence between the Ayurvedic and Chinese (largely Taoist) approach.
So with an open mind I had a Zoom session today with an Ayurvedic doctor in Cheltenham. I liked her approach and have arranged for a face-to-face session in Cheltenham. Liz will come with me.
5th May 2020
Attended another All Cancer Support Group session. It's a very small group, which is concerning. The speaker was an acupuncturist from Newent and was excellent. There was a valuable question and answer session after. I received a lot of confirmation that I seem to be on the right track and that using acupuncture as my therapeutic element is appropriate. The relative coherence with the Ayurvedic philosophy was confirmed.
(I spoke to the organiser about sugary cakes and she was unaware of the implications for cancer patients and will try to obtain savoury snacks in future.)
In the afternoon I had an hour long telephone session with a doctor from Penny Brohn. She supported my approach and suggested ways of handling my occasional bouts of hypoglycemia, telling me to make sure I had a chocolate bar and a phone with me when out walking and not to be too far from civilisation. Apparently hypoglycema can result in an imbalance of insulin and could put my body in shock. No doctor has told me that before! She also recommended Ashwangandah capsules to help with anxiety and sleep. I've ordered three month's worth.
10th May 2022
Attended a consultation with the Ayurvedic doctor in Cheltenam. Liz took notes while I answered and asked questions. The session lasted 1¾ hours – way beyond the hour paid for. We got some useful advice such as eating fruit separately from breakfast cereal because the digestive processes are quite different. That makes sense. Also having warmed oatmilk with cereal. The use of Ashwagandah was also recommended, confirming the Penny Brohn suggestion. Her diagnosis for treatment was an inbalance between fire and water. My understanding is that these are elements associated with the first two of three 'gunas' in the Vedic traditions. Satva is 'spiritual' and represented by water. Rajas is 'action' and represented by fire. The third is Tamas which is 'lethargy' represented by earth. On thinking about this I am prone to enthusiasm, excessively so sometimes, and certainly have a deep spiritual aspect. I can see how the former can interfere with the latter.
12th May 2022
Having written up the notes, considered the Ayurvedic approach and discussed it with Liz I've decided that if I were to follow that course I would need to commit to it solely. Since I'm comfortable with my current regimen and that approach is being confirmed on a number of fronts it would seem wise to stick to it at present. I shall ask Penny Brohn for another appointment with a nutritionist to review my diet.
13th - 20th May 2022
We spent 13th to 16th visiting friends and relations in Bristol and overdoing it. We arrived home on Wednesday afternoon absolutely shattered. Tuesday was spend catching up with washing before going to Staffordshire on Wednesday, staying overnight for a funeral on Thursday after which we drove home. On Friday we had lunch with friends who were passing through the area. I felt well enough on Saturday to do the village walk and felt pretty good afterwards. However, later that day I crashed and we both found it a struggle to get through the next few days. I think this is more down to age than to cancer, although I think the chemotherapy knocked me back a bit. I'm not back to the joie de vive that I was experiencing before.
Food-wise has been difficult for me. No organic stuff, of course, and we're both been made more intensely aware of how unhealthily most of us eat according to the offerings at our hotel and in restaurants and pubs.
23rd May 2022
Started my diet diary (now that we're largely at home.)
26th May 2022
Another friend dropped by and we had a lovely heart to heart conversation. She asked me a lot about my regimen and well-being and it gave me wonderful opportunity to do a mental review of where I'm at.
30th May 2022
At the end of the first week of my diary I'm realising that we're probably not eating sufficient green stuff. I shall continue to keep the diary going for another week.
5th June 2022
At the end of the second week of my diet record perhaps we're not eating enough green stuff or fish. I have an appointment with my Penny Brohn nutritionist on Tuesday and have sent her the record of my diet.
7th June 2022
I had a conversation with my Penny Brohn nutritionist who endorsed my regimen with a few slight adjustments. To increase the amount of green stuff she suggested having a salad for supper, so on the organic order this week we included spinach and lettuce. I was also given a good recipe for a dressing and one for a spread with sardines that sounds quite delicious (though I doubt Liz will think so.) My nutritionist reminded me about magnesium citrate which we discussed before but I'd forgotten about. Now on order. Also to continue with milk thistle to detox the liver and help with sleep.
8th June 2022
It was my last free appointment with my acupuncturist at Yeleni. She continued the Moksha treatment involving putting flames on the ends of the needles. With needles removed I lay on my back for 10 or 15 minutes and had an interesting sensation. It began in the pelvic area where I felt a warmth rather akin to that I get when injected for my CT scans. As I observed it the warmth moved up to my solar plexus, then to my chest and neck and my head then to my feet. The palms of my hands also tingled as they always do when I experience an influx of energy.
9th June 2022
At the Herefordshire All Cancers Support Group Bridgid, a sound therapist, brought three huge gongs. We lay on the floor or, as I did, sat on sofa, and let the sounds reverberate within us. I had a synethetic experience. One sound produced a sparkling sapphire fern with magenta edges. Under the influence of another I saw orange leaf-like flames arising out of green stems. There was also an ominous sound which produced flat red and black dappled effect. One early sound brought an intense emotion nearly bringing me to tears, others, like the ominous sound, made experience aversion. About five minutes before the end I lost connection with the sounds and just wanted to the session to end. Brigid brought us down with soft chants and stroking a stringed instrument to produce chords. I had hoped to arrive in a state of blissful peace, but instead felt washed up on a beach.
10th June 2022
Had a practice session jamming some jazz with violinist and friend, Chris. We'd done about five numbers when I ran out of energy and needed to leave. I'd intended to do some gardening that day but just had no energy, no vitality for it.
11th June 2022
Went on the village walk this morning. Felt a bit sluggish on the way to the village centre but thought I'd walk myself out of it. After 35 minutes, however, I realised I had to quit. Again, no energy, no vitality, no libido. I sat for a while before heading for home. I don't feel ill, just fatigued and don't know what this is. Checked my blood pressure (average of three readings). 128/66, which is classed as ideal (especially at my age). Not a great variance between the three so am guessing that my HRV is OK too. Temperature is fine. Urine is clear. I don't feel ill – just sluggish. Liz is on much the same diet as me and she's not getting this. My nutritionist has approved my diet. So what's going on? I will ask the surgery on Monday to do a blood test.
12th June 2022
Weighed myself and discovered I was below 12 stone (11 stone 13Lbs) for the first time in about 60 years! This is a concern because weight loss and fatigue can be a sign of cachexia where cancer cells inhibit the body's ability to absorb proteins.
13th June 2022
Back up to 12 stone. I'm going to boost the my protein intake this week. Fish and chicken and a little real cheese.
14th June 2022
Felt more vital this morning so I walked a route where I could easily turn back if I got to a point where I needed to because of lack of energy. However, I did the full run – nearly three miles and though tired at the end, was not as fatigued I have been. I'm beginning to wonder if I should stop my supplements for a couple of weeks to see what happens.
15th June 2022
Back up to 12st 2Lbs, a weight that I've been at for some weeks and a point at which I though my weight had stabilised. I still don't feel fully vital though and libido still zilch. Something is wrong and I'm becoming more convinced that my intuition to stop my supplements for a while could be right. In each capsule I'd taking in many, many times the amount of active biochemicals that a normal diet would provide and my body has to deal with this massive intake daily. Also I'm using a wide variety of herbs and don't really understand how they may interact with one another.
The surgery called me this morning asking me to go straight away for a blood test. That's great as I have a telephone conversation with my GP on Monday.
17th June 2022
Today I stopped taking all my supplements except the prebiotic and probiotic.
18th June 2022
Felt better all day. It's been pouring with rain and I haven't been out walking or gardening, so I haven't tested my endurance level. It seems my libido is a bit stronger.
19th June 2022
Feeling much better. I went for a walk and definitely felt some vitality rather than sluggishness. Early in the walk my pace was 114 steps per minute. (The standard marching pace of the British Army is 120 paces pm – that I learned as a National Serviceman in 1959.) By the half way point I was feeling fabulous and wondered if I make take the longer route, but decided to be sensible and not use up all my new found vitality too soon. I checked my pace again. Still 114 steps per minute – and part of that was up a slope. By the time I got home I felt really invigorated. I cleared the outgrowth of elder from the water tank behind the greenhouse and watered the tomatoes before going in for a well-earned glass of spring water. Early days. I really didn't expect things to change this quickly and there's always tomorrow.
20th June 2022
I had a call from my GP this morning to report that my blood tests all showed that my blood is normal on all counts. That's a relief. He was obviously cautious about my using nutritionists and doctors practising holistic medicine. His advice was “Eat whatever can be eaten,” which was disappointing but unsurprising. He also said I could try reducing my Bisoproplol Fulmerate to half a tablet. This might allow my pulse rate to increase.
Feeling good today. I did over an hour's work on the garden without fatigue and have felt pretty buoyant all day. I shall continue to stay off supplements for two weeks and reintroduce them one at a time one week at a time, Reishi first, then Cordyceps followed I think by Broccoli and vitamin D. That may be enough. I don't see much point in milkthistle if my blood tests indicate the liver is normal. I will check this all out with my nutritionist and keep her in the picture.
23rd June 2022
Had a chat with youngest daughter, Angie. She suggests I give it two weeks between adding supplements as it can take that long for the effects to appear. Remembering my initial experience with chemotherapy that sounds right. I also think I'll start with the least likely to cause problems – vitamin B and Omega 3.
25th June 2022
Blood pressure a wee bit up but not significantly and still below 130 dia. Pulse has been a little faster at around 64 but again, not a significant increase.
I did at least three miles with the Saturday walk this morning. Had an hypoglycaemic episode half way round. Ate a chocolate bar, rested a while and made the other half of walk with no trouble. After a shower I walked down to the village shops and back feeling good all the way.
1st July 2022
I bought four significant books in earlier this year: Kelly Turner's 'Radical Remission', Lynne McTaggart's 'Intention Experiment', Bruce Lipton's 'The Biology of Belief' and Keith Block's 'Life Over Cancer'.
For some time I've been considering that the universe is made up of an infinitude of possibilities. That I developed cancer was a possibility. That I could be healed of cancer is another possibility. That that healing could take place as a result of my regimen is another possibility. All this was confirmed as more than mere conjecture in Kelly Turner's 'Radical Remission'. Having been working with cancer patients she discovered that some experienced radical and unexplained remission from very serious forms of the decease. She was shocked to find that the doctors treating these patients didn't seem to be interested in finding out why this happened. They simply wrote it off and an unexplained event with the caveat that it might come back. As a result of this omission, Kelly undertook a PhD to examine the phenomenon more closely. She researched about 1000 incidents and lists nine things that most people did to some extent or other to effect their healing. This seemed to relate to the energy healing work being done by Bill Bengston which I mentioned in my 'Story So Far'.
Then I read Lynne McTaggart's 'Intention Experiment' in which the way in which the human mind affects the material world has been demonstrated through thousands of experiments by scientists. Lynne has set up a worldwide experiment involving thousands of people trying to discover what factors help the human mind to effect changes in chemicals and living things, both plants and animals.
Next came Bruce Lipton's 'The Biology of Belief'. Bruce, an acclaimed research scientist specialising in cell biology, wrote, “My professor, mentor, and consummate scientist Irv Konigsberg was one of the first cell biologists to master the art of cloning stem cells. He told me that when the cultured cells you are studying are ailing, you look first to the cell’s environment, not to the cell itself, for the cause.” That made every bit of sense even to an unscientifically educated person like me. I reflected that my oncologist never spoke of my general health, only of the treatment he was suggesting to kill the cancer cells. Once I began to examine nutrition and cancer more seriously I was shocked to discover how little allopathic practitioners are in their knowledge of the environment in which an illness takes place. When I told my oncologist that I'd seriously cut back on sugar his response was , “You don't need to worry about that.” When I explained my regimen to my GP he said, “You should eat what you like.”
I was getting more interested in nutrition so the next book I bought was Keith Block's 'Life Over Cancer'. Keith is a cancer specialist in America who runs clinics that provide allopathic and alternative medicinal treatment for patients. The latter includes nutritional advice and psycho-spiritual support. His detailed descriptions of which foods can be everyday, once or twice a week, seldom and never has been a great help in fine tuning my regimen.
16th July 2022
We were due to go to Bristol today to celebrate son-in-law Roger's 60th Birthday and had booked a hotel for the night. As we were packing in the morning I realised that I wasn't feeling 100% and said so to Liz. She felt the same so we felt it wise not to travel. I have no idea what the problem was, we just felt very tired. Perhaps the result of a few sleepless nights. This raises a concern about our planned holiday in Cumbria, Northumberland and Yorkshire at the beginning of August.
20th July 2022
I saw my oncologist today. He hadn't received the full report from the radiographer and tried to interpret the CT scans himself. He had the previous image and the current one side by side on the screen. Unfortunately the latest image larger than the February one, which made it look a bit worrying. Once he'd corrected that it was obvious that some of the tumours are growing, but only very slowly still. Most are little dots. I gave him my blood pressure and weight record showing the average of 16 readings over six months to be 126/70 with a pulse of 62. He didn't remark on it and handed it back. I told him he could keep it on file. Who knows, he might one day be replaced by someone who's really interested in their patients overall health and encouraging of their efforts.
25th July 2022
My vitality level had been a bit up and down and I've had whole days of feeling sluggish. One day, I decided to eat a Nutribar and within 20 minutes was feeling normal again. This made me think that the problem is probably sugar levels. I'm used to sudden hypoglycaemic episodes which take me be surprise and make me feel empty, weak, shaky and desperate for sugar. I've never had days of lost energy before, but maybe that happens because my sugar level is only just below parr. So perhaps the culprit was not supplements. After all, while I was on them my bloods were OK on all counts. So I've slightly increased my intake of fruit and maple syrup and take a bite out of a biscuit at the first hint of sluggishness. This seems to be working.
Reducing my Bisoprolol Fumerate medication to half (125 mg) has made no difference to my blood pressure, which was expected. However, my pulse rate appears to have increased by two points (62) on average, which was expected but is not enough to worry about.. The trend showed a higher rate than this in March so I think this should be seen as normal. I will now suggest I come off beta blockers altogether.
I've added Reishi, Cordyceps and Ashwaganda to my supplements so far without problems. In the last 10 days I've done six three mile walks and a couple of one or two hour sessions on the garden. Feeling good. People are actually come up to me in the street and remarking on how well I look.
31st July to 12th August 2022
We travelled to Cumbria staying overnight at Wrexham arriving at Bowness-on-Windermere on the Monday. Over the next four days we travelled short distances each day with our South African friends. On the Friday we set out for Allendale Town in Northumberland stopping for the night half way at Penrith. We spent three days visiting sites largely on Hadrian's Wall then travelled south to Wetherby in Yorkshire to stay with friends for two nights before heading for home stopping to overnight at Wrexham on the way. About 1000 miles in all and we both felt fine.
It was difficult to maintain my regimen while we were travelling. Vegetarian food is available but there isn't much choice, it is not widely understood how to cook it and organic is almost non existent. Inevitably I increased my sugar and protein a bit. (The steak in Cumbria was irresistible as were the scones in Allendale Town and the deserts in Wetherby.) This and other digressions may (only may) indicate that my fatigue could have be due to low blood sugar.
17th September 2022
It's been a tiring week. Having had the oil boiler replaced with an air-source system we have two extra pipes running from the boiler to the loft and all the other pipes extended through the dressing room into the loft. This has meant that I've had to make cladding panels to hide them which is rather physical. On Tuesday I also had to remove the trellis around the oil tank so that it could be removed for recycling on Wednesday. So this morning I decided to have a break and go on the village Saturday walk. Of all weeks the route was about 1½ miles longer than usual. I was knackered. I'm finding that I really can't do as much physical work as I used to and have to pace myself. I think I've got my sugar levels about right because I haven't had an hypoglycaemic attack for some time. I guess this is just old age. But exhaustion must weaken the immune system, I would think, and I'm doing all I can to keep that in as good condition as possible.
I've had several bad nights recently which hasn't helped my energy levels. I've decided to take two Ashwaganda capsules and two herbal sleep tablets an hour before going to bed. I've also decided to go to bed when I'm feeling really sleepy and not force myself to stay up until 10 o'clock. I've now had two nights in which I managed over 6 hours sleep. Even when I had to get up and pee two or three times I got back to sleep quickly.
18th September 2022
Posted on FaceBook by Quaker friend Ann Banks, and particularly poignant just now as I experience ageing more intensely:
"It's madness
to hate all roses
because you got scratched
with one thorn,
to give up all dreams
because one of them
didn't come true,
to give up all attempts
because one of them failed.
It's folly to condemn
all your friends
because one has betrayed you,
to no longer believe in love
just because someone
was unfaithful
or didn't love you back,
to throw away
all your chances to be happy
because something went wrong.
There will always
be another opportunity,
another friend,
another love,
a new strength.
For every end,
there is always
a new beginning.
And now here is my secret,
a very simple secret:
It is only with the heart
that one can see rightly;
what is essential,
is invisible to the eye."
Antoine de Saint-Exupéry
The Little Prince, 1943
In contracting cancer my immune system didn't let me down, I let it down, by not maintaining a healthy environment for it to do its work.
21st September 2022
I've been considering getting a water filter jug for some time (I can't afford a reverse-osmosis system which is the best, I understand). The levels of chemicals and heavy metals in tap water, while not dangerous, and some necessarily for health protection again bacteria, are things that the immune system still has to deal with. If I want my body's immune system to work at maximum efficiency so that it can concentrate on dealing with the cancer, then I have to inhibit its work as much as possible. So I got one quite cheaply from Amazon (£22 including a 60 day filter) and this is now processing all tap water that we drink. It filters surprisingly quickly. I can say I've noticed any difference in the taste of tea or coffee and I probably wont' since that's all we use it for. If I want water to drink then I have spring water in glass bottles. I put a little label on the bottle with the words 'Peace, Love, Joy' written on it. Japanese scientist, Masaru Emoto showed that water thus exposed to words of good sentiment produce more beautiful crystals when almost frozen that water that is ignored. Tap water (especially Tokyo tap water) produces the ugliest crystals, he found. Maybe I should put the messages on the filter jug. This may sound a bit OTT (it does to Liz) but from all I've discovered about the way in which the human mind can have an effect on the material world the more I'm included to trust such research.
24th September 2022
This morning I continued re-reading (for the umpteenth time) Robert Sardello's book, Silence: The Mystery of Wholeness. In it he speaks about the need to shed memories of past events that may cause us to feel regret or guilt, or feel hurts from the behaviour of others. Through my acupuncture treatment, where we were dealing with a life-long underlying feeling of anxiety, I came to realise how much past hurt I've been carrying with me. Acupuncture helped me picture these as little energetic whirlpools that disrupt the natural flow of life energy (Chi or Prana) and inhibit or prevent the smooth execution of my life energies – creative, compassionate and communicative. Sardello gives a practical exercise to deal with these blockages. It involves writing them down on paper, bringing them to mind, then letting them go by disposing of the paper. This doesn't suit me for some unknown reason. So I devised my own approach. I focused my awareness on the memory of an event and its location. I then allowed mystic language to speak through me to it directly. Following this I forgave and asked for forgiveness as appropriate and pictured my burying the event in the ground at the location, the idea being that we should leave things where they arose and not lug them around with us for the rest of our lives. Immediately after I felt a sense of lightness. I have had low stamina levels for a while but this morning it was as if a heavy load had lifted. I'm writing this three hours after completing the practice and I still feel light in body and free in mind, though I wouldn't want to do a long walk today! Whereas Sardello speaks of releasing as an ongoing practice, I feel as each thing is released that should be the end of it. Once released it should not be taken back again. Having said that, I have no idea as to whether others may feel the need to undertake either practice to deal with the same issue previously tried chakra alignment but now suspect that this may be more useful after the releasing practice. The same may be true of acupuncture treatments. Perhaps the cognitive process begins first and the physical follows it to realign bodily functions that may have undergone cellular change.
6th November 2022
I had been taking Inulin as a pre-biotic. It was advertised as a help for sleep, though I didn't find it so. Being in powder form it was OK for taking in drinks or with cereal but not as convenient as capsules. So when my supply of Inulin ran out I bought some High Fibre Blend pre-biotic from Holland & Barrett. It contain fruit, veg, psyllium husk and oats. I took the prescribed three capsules a day with a meal for several weeks. This did appear to begin to help me sleep better but I found I also became very constipated. DulcaEase didn't relieve the problem and I had to resort to DulcaLax which worked. However, I realised that without them I had a problem so I stopped the pre-biotic. Within a couple of days I began to get back to normal, but was not sleeping as well. I
I get to sleep easily most of the time but once I've got up to have a pee I don't easily get back to sleep and often end up going down, having a whisky mac and two paracetamol and sleeping sitting up on the sofa with my feet on the foot rest. I sleep deeply that way and often don't wake up until 7.30, instead of my usual five o'clock. So I'm trying a new idea. When I get up to pee I chant “Sleep, sleep — Sleep, sleep” on the way to the loo and back to bed. I keep chanting until I drop off to sleep again. It seems to be working most of the time. The idea is to distract my mind from starting a train a thought that will keep me awake and, at the same time, instructing my subconscious of what I want to do. Well, that's the theory.
Throughout October my energy levels have been very variable. There are times when I could manage a three mile walk with reasonable comfort and others when one mile was more than enough. I could sometimes do a couple of hours in the garden, then felt my energy run out after one. I will talk to my oncologist about this when I see him next week. I'm wondering whether my plant-based diet is giving me enough protein and thinking that maybe I either need to eat more fish or have red meat once a week. I've also had a couple of hypoglycaemic episodes lately. Maybe my blood sugar levels are a bit low. That seems to be a difficult balance to keep: reducing sugar so as not to feed the cancer cells and keeping my blood sugar level in balance. Maybe I need a device to help with that.
I saw a GP recently about my intermittent tickly cough and my problem with having to pee two or three times at night and finding the need to go during the daytime sometimes becoming very urgent. He's referring me to ENT about the throat, as I hoped he would, and arranged a PSA test. It's perhaps a big worrying that my oncologist hadn't asked for this among my regular blood tests. I've assumed that if there was anything wrong in the prostate it would show up on the scan. So now I'm a little concerned but should have the results by midweek.
9th November 2022
I saw my oncologist today. It seems that I now have 'visitors' in my pancreas. He said that this showed up on my last scan but he didn't have the radiographer's report on that occasion and, as usual hadn't looked at it until I arrived for my consultation. I'm sure I would have remembered something like that. It was a bit of a shock. I've been hoping that my regimen might be having a bit more bite by now. However, I still have no symptoms though my energy levels are low.
15th November 2022
I had an acupuncture session today in which Emma continued with working on the fear centre in the area of my solar plexus using Moxibustion. This involves smouldering (without flames) of the Chinese herb Moxa on Acupuncture points. Unfortunately I had a busy day and didn't give time for the treatment to be assimilated. I must make sure I do that in future and drink plenty of water.
Emma told me about as new treatment available at Yeleni called kinesiology. I looked it up and it seems to combine acupuncture (without needles) and Chinese medicine practices with homeopathy and Reishi type practices. It is to do with movement (kinesis=Greek for movement). I was sent a link to a talk by osteopath, Richard Holding who has developed interdisciplinary treatments using aspects of a range of healing practices. So the kinesiology approach appeals to me. I have an appointment on 1st December.
23rd November 2022
It took me some time to get around to asking for the result of the PSA test. Absolutely normal, they said, so no further worries on that score.
1st December 2022
I had a 1½ hr session with Jenny, the kinesiologist at Yeleni. A lot of the session was gathering information about me and my condition. Then I lay on a couch while Jenny got me to raise my left arm slightly and, while she applied gentle pressure with her hand got me to make statements about how I felt in relation to different aspects of my condition. My answers were affirmed if my arm resisted the downward pressure of Jenny's hand. If my answer did not accord with my body the arm would give. I experienced this with a diviner some years ago, though on that occasion it was more a party trick. The diviner asked me to stand and raise my arm horizontally. Like the kinesiologist, she too applied pressure on my arm whilst saying, “My name is Brian.” My arm resisted her pressure, but when I said, “My name is Michael,” (or some such) my arm gave way. I couldn't resist. So I recognised this process and was fascinated by the way it could be used to interrogate my body about the validity of my statements.
I expressed my suspicion that my underlying anxiety might be arising from subliminal fears about tumours. “Let's test it,” Jenny suggested. With my arm raised and her finger resting on my forearm Jenny got me to say, “I am worried about the tumours in my lungs.” My arm gave under the pressure. Then she got me to say, “I am not worried about the tumours in my lungs.” My arm remained resistant, affirming that to be true. We carried out the same procedure in relation to tumours on the kidney bed and in the pancreas. It seems that I really am not worried about them. Jenny also gave me words to read from a card. From my responses to them a number of possible sources of concern were revealed. Interestingly, one was 'mother'. I have never doubted that my mother loved me and never experienced anything that I considered a problem except that I can't remember what it was like to be cuddled by her. I don't even know if she ever cuddled me though I can remember being cuddled by my dad. This came into my awareness when I saw my grandsons cuddling with their mums and feeling sad that I couldn't remember doing that with mine. Might there be a link, one among many perhaps, to my sense of insecurity.
I now have some tiny homeopathic pillules made from extract of bluebell, one to be dissolved under the tongue three times a day. When the word 'bluebell' was mention I immediately recollected that, aged five, I had broken both bones in my right forearm when I fell off a steep bank grasping a bunch of bluebells picked for my mother. A few years later I several times returned from walking up to some woodlands near our home with n armful of bluebells for my mother.
12th December 2022
I've been suffering constipation for some weeks now, which is surprising considering we're on a plant-based diet. I decided not to raise this with the kinesiologist but to see a doctor first. So today I saw a doctor I hadn't seen before but wished I had. He was very thorough. We talked through the problem and he checked out my enlarged prostate in case there was an obstruction from that. It seems not. He gave me a kit to take a sample of a stool for testing and suggested eating prunes.
19th December 2022
The stool sample has been shown by the lab to be negative. I've been breakfasting on Allbran and prunes and am seeking some improvement.
26th December 2022
Within a few days of my kinesiology consultation I was feeling much more of my old vitality. I did a two mile walk and felt fabulous. A few days later I did one of my regular three mile walks and again, felt great. I didn't need to collapse in a chair and after a short rest cooked dinner. Over the Christmas with family at Cirencester I did two walks, one an hour long, the other an hour and a half and finished feeling exhilarated. I didn't need to sit down when we got home but stood around in the kitchen chatting over coffee. We had a lovely time with family from Bristol this morning then I drove 70 miles home arriving feeling comfortably tired. I seem to be sleeping a little bit better, not have as many disturbed nights as I had before the kinesiology treatment.
My weight remains constant at around 11.5 stone and my blood pressure around 120/66 with a pulse of 61.
3rd January 2023
On Saturday I did a four and half mile walk with the village walking group, on Sunday I did an hour and half's gardening and on Monday I did an hour and a half's practice with the band. On none of these occasions did I feel exhausted, as I would have done before 1st December. I can only guess that my body's energy fields have undergone a major realignment or normalisation. It's such a joy to feel energetic again.
11th January 2023
I had a telephone consultation with my oncologist today. He informs me that one of the three tumours in my pancreas is 18mm in size. He continues to offer chemotherapy but I still feel this would be a retrograde step for me. I feel very fit and well, especially after the kinesiology, and would rather have a shorter but more vital life than a slightly longer but uncomfortable one.
I realised as a result of this consultation that what I want in a doctor is not a commentator who tells me the state of the game but a coach who helps me to play the game better. Sadly, my oncologist is one of the former. He's not very forthcoming and leaves me to ask questions when often I don't know what questions to ask. It's come to me that I should have asked what is the volume or width of the the tumour. After all a tumour a couple milometers wide is not going to pose as big a problem as one a centimetre wide.
12th January 2023
My Bhuddist Lama friend visited me today. She gave me a piece of cut crystal that had only been touched by two people before me. The first was the young Nepalese man who took it from a Himalayan cave, the second Lama Choesang. So it's a bit special. I'd like to make a dowsing pendulum with it and wondering how I might achieve this myself, so that it remains something touched by only three people. I want to find natural materials to form a clasp and loop and some natural or pure wool to suspend it from.
My bowels seem to be back to normal. I've been breakfasting on Allbran with Shredded Wheat or Allbran plus four prunes. My stools are normal and I'm able to pass them without excessive force. I do feel better for this.
15th January 2023
I saw my kinesiologist, Jenny, again on 5th January. This time I asked for help to recover from muscular pains in both shoulders, the right one from a fall in July, the left one probably from lifting a heavy flower pot in December. Jenny worked on my heart chakra with regard to gratitude. While I was in repose she gently massaged my forehead with her fingers which brought a vivid memory of my mother stroking my forehead at age four when I had meningitis. I did feel a sense of gratitude to my mother during this process and have reflected on it since. It may be that this has brought some healing in this area because, although I've never felt unloved, I cannot remember my mother cuddling me. This was brought to mind each time I saw one of my grandsons cuddling their mums. They still do this though now in their 20s and it's lovely to see. I was never that close to my mother. This made me reflect, perhaps more intensely than before, that my first marriage came about because I was looking for a mother and my girl friend was looking for a father. Disappointment was inevitable.
A week later and the pains in my shoulders persisted so I returned to the exercises the physiotherapist gave me to do and I'm finding a gradual improvement.
I've been reading Maria Sagi's book, Information Healing, about the New Homeopathic. That was a term coined by the Austrian scientist, Erich Kőrbler, who developed a dowsing rod that responds to electro magnetic fields. This seems to me to be closely related to kinesiology and Jenny showed a great interest when I told her about it. Kőrbler's discoveries make sense of aromatherapy, crystals and energy healing since they show that as well as a biochemical and electromagnetic level of interaction in living things but a quantum level too. For this reason I've bought some lavender oil to help me sleep at night. I have a tissue in a container by my bed on which a couple of drops of oil are put each night.
Kőrbler and Maria Sagi, his protege, use symbols, either marked on he body or read from a card, for healing. It's as if the symbols carry the consciousness that wrote them. This may be related to Masaru Emoto's discoveries with the crystalline structure of water. If this is so, then maybe some of the things that have been considered 'magic' are not so off the wall as we think they are.
30th January 2023
From reading 'Information Healing' and watching kinesiologist Jenny at work I've been practising a technique for helping align the chakras or maybe bringing the flow of energy on all levels into coherence. It's simply this: holding my left arm out slightly as a sort of antenna, and with the the left forefinger touching the ring finger, I then position my right palm three or four inches from the Atlas at the back of the head and, while focusing my consciousness on the skeletal area move my hand over my scalp, down my face and neck and down to area of the base chakra. I feel the hair on my head responding to the energy of my hand and a distinct warmth as my hand passes down my face and throat (even when my hands are cold). This movement I perform at least three times. I shared this with friends Sarah and Laurie and they were surprised at the calming effect it had.
I'm finding it helpful to think of the energetic pathways in the body to be of three aspects: Molecular (biophysical and biochemical), Electro-magnetic (atomic) and Informational (sub-atomic). Whereas traditional allopathic focuses on the molecular aspect and acupuncture, yoga, Tai Chi and New Homeopathy on the Electro-magnetic, little is being done on the sub-atomic aspect although homeopathy and New Homeopathy do seem to incline in that direction. It seems essential that all three pathways should operate coherently and that the object of therapy is wholeness and coherence, not directly on healing. Healing is a possible outcome of wholeness and coherence but not the main aim.
2nd February 2023
(1) I regularly sleep well until about four or a little earlier then, having got up to the loo can't get back to sleep. On Monday I went downstairs, made of decaf coffee with a splash of whisky, took two paracetamol, read for a while and slept soundly on the sofa until 8 am. I've been using lavender oil as an aromatherapy but that doesn't seem to have made me sleep longer. I wondered if it might be to do with the orientation of my bed. It is oriented East-West whereas the sofa is oriented North-South. So yesterday I changed the beds around. It didn't make any difference. I awoke at 03:42 this morning and got up at 04:30. I have now ordered a new mattress.
(2) A dream: I am walking up a familiar single track lane with friends. I can't tell you who they are, these are just friendly presences. Suddenly from the junction ahead appears a white polystyrene torso which seems mounted on castors. It glides down the slope towards us and we stand aside to let it pass. We watch it glide on down the hill, then turn to continue our walk. Then a black polystyrene torso appears and glides towards us. Again we stand aside to let it pass which it does. But within a few yards of us it slows and turns towards us. A shiver goes down my spine. It glides back towards us and comes to a stop a couple of yards away. I approach it and threaten it with my walking stick and as I do so the image of a roaring tiger appears on its belly. I thrust my walking stick into the face of the tiger and a gaping hole opens up. Effortlessly my stick goes deep into the dark bowels of the torso and I wonder whether it might be devoured by the unspeakable evil that seemed to be inside or whether I might face some kind of retribution but I keep thrusting until my stick comes out the other side. Then I woke up.
It immediately came to me that the unknown may have the power to threaten me but it has not power to harm. The harm comes from my fear of it.
There seems to be allegorical significance in the object having no arms, legs or head. It can't do anything. Also that it's made of insubstantial polystyrene. It's easy to push my walking stick right through it. The roaring tiger is a projected image (psychologically as well as literally). The unspeakable evil remains hidden in darkness. Is that my fear?
8th March 2023
Another dream: I am walking down a country lane. There are no houses in sight and the hedges on either side are too tall to see over. I hear the sound of galloping hoof beats coming from behind me in the field to my left. I arrive at a sharp left hand bend in the road and 100 yards from the corner see a large brown bull emerge from an open gateway. I look for an escape route. Ahead is a narrow farm track with high hedges either side, but the bull could easily trap me there. To the right of the entrance to the track there is a very high fence-like gate which seems locked. While I stood considering how to scale it, the bull trotted up the lane and stood barring the way to the fence. I moved slowly to be close to the hedge and sat with my arms around my shins. Then I awake for a few moments but went back to sleep and resumed my dream. (I’ve never done that before.) I moved from the hedge and leaned against the bull’s great bulk, stroking and patting it as it lay contentedly beside me.
10th March, 2023
Today I broke my left upper humerus. I put the car in the garage not knowing that I had not closed the door adequately. It had sprung open but I didn’t notice because I was concentrating on negotiating a path between the side of the car and old mattress I’d leaned against the wall ready to take to the tip. As a consequence I hit my forehead against the corner of the boot door. This is not me back into the wall and in trying to regain my balance I fell forward into the garage door architrave. The pain was agonising. We called an ambulance and I was taken to Hereford hospital A&E. I was astonished to find that the fracture clinic was not open on weekends and had already closed the time we arrive at Friday evening. Not only that but the 24-hour pharmacy that used to exist in Hereford existed no longer. I would have to wait until the following morning to obtain morphine and with only a small sling to support my arm until Monday morning when they could put a brace on the fracture.
When friends heard of my predicament they gather round to help me. A kind soul went to Leominster the next morning I got the morphine. I did manage to get a little more comfortable and had only slight pain until I moved. On the following Monday I was able to see an orthopaedic surgeon who referred me to the Royal Orthopaedic Hospital in Birmingham. The fracture clinic help me undress (I had remained in the same clothes since the Friday) and fitted a brace. It’s impossible to plaster cast kind of break I have, which the doctor told me as the most painful kind of fracture. (I could have told him that.) They also gave me two exercises to do with my arm one of which was far too painful initially.
Within a few days I was able to perform the more painful exercise and continue with these for two weeks. But my forearm was swollen and my elbow was very stiff. I decided to look up exercises in relation to broken humerus on the Internet. I found a whole series of exercises on the East Sussex NHS website. I began using these but wondered whether the Hereford hospital team would approve. So I telephoned the orthopaedic department, told them what I was doing and ask for advice. They told me that since I was now discharged from Hereford hospital I needed to contact the Royal Orthopaedic Hospital in Birmingham. That disappointed me because I hadn’t heard anything from the Royal Orthopaedic at that time, but I rang them. They said that because I’ve not yet had a consultation they could do nothing for me and I needed to contact Hereford hospital. So, I contacted Hereford hospital and explain the situation but was told that the only solution was to go to A&E! All I wanted was a bit of advice. I certainly wasn’t going to waste any time trying to get that.
25th March 2023
I had a telephone call from someone at the Royal Orthopaedic Hospital to say that an urgent appointment had been arranged on 10th April with an oncologist. (A month with a broken arm and that consultation date was regarded as an urgent response!) The appointment was to be at 1:15 PM and I should expect to receive an appointment for an MRI scan two hours previous to that. I was surprised that they were running clinics on Easter Monday but assumed this was just a case of working as far as they could to catch up.
29th March 2023
Still no letter from Birmingham confirming my appointment or where to go so I telephoned the oncology department at ROH. They advise me that there would be no clinic on Easter Monday and that the appointment was in fact on 11th April at 6 PM! Also that I had an appointment for an MRI scan at Birmingham the following day. That came as a shock. Fortunately a very dear friend and neighbour was able to take me to Birmingham for that appointment. . I explained my situation to the nurse on the phone. She asked me to hold while she investigated. When she returned the phone she said that an appointment had been moved to the 6th April.
3rd April 2023
I still needed advice from a physiotherapist, so I phoned my GP surgery, explained my predicament and was given an appointment late that afternoon. My doctor told me that the surgery’s physiotherapist had left and getting an early appointment elsewhere would not be easy! Maybe I should go private! He also looked up the information on my medical record and revealed that the MRI scan had revealed a concern about a tumour in my bone. Until then I had not been clear about why I was seeing an oncologist rather than a surgeon. Now it made sense, but I hoped that they would soon be able to fix my shoulder.
6th April 2023
A very good friend took me to Birmingham for my 1.30 appointment with the oncologist. We arrived in plenty of time, and ate our sandwiches in the car. From my earlier visit I realised there was little worth eating in the coffee outlet there.
I had to complete a questionnaire on a touchscreen in the large waiting area. The information board revealed that appointments for the consultant I was to see were running 10 minutes late, which I thought was acceptable. It didn’t take that long. The nurse took me to another waiting area and asked me a set of questions many of which duplicated those that I had just keyed in to the touchscreen. Eventually I was ushered in to see the consultant whose name I found totally unpronounceable especially since like everybody in the hospital he was wearing a protective face mask. He came quickly to the point and explained that they had found a tumour growing in the bone when the break was. So had not broken my arm and had an MRI scan I may never have discovered the tumour until it was too late. It turned out that this was a surgeon who specialised in oncological issues. He was very thorough in his description of my condition and his explanation of what he intended to do about it. He had booked me in for the operation the following Friday, 14th April. The Macmillan nurse was present throughout and she seemed to be able to provide considerable help to the surgeon in covering everything needed. She gave me a card should I need to contact her or anyone in that department. That led to the little moment of synchronicity. Her name is Andrea, the same name as my youngest daughter, and it was only her card that revealed she was a Macmillan nurse and I hope volunteered for Macmillan some years before. The proficiency, kindness and confidence that the surgeon displayed correctly encourage me and I had no hesitation in signing the form to give the go-ahead on all aspects of the operation. I am to have 5 cm of bone taken away and metal plate fitted. This means I will lose some mobility in my left shoulder but was assured that this should not affect my guitar playing.
13th April 2023
I was fortunate that the Royal Orthopaedic Hospital was able to accept me on the day before my operation. Getting there for 7 AM start would have been difficult, to say the least. Yet another kind friend transported me. On arriving at the ward the door needed a security code. We tried several times to attract the attention of nurses milling around inside but no one was inclined to let us in it seemed. Eventually someone took us to the nursing station where four nurses were in deep conversation. None of them acknowledged our presence and we waited some time before the conversation, which no doubt was important, was completed. Then one of the nurses told us to take a seat in the corridor were two ladies sat waiting. I told my friend to go home since there was no indication as to what was to happen next. Neither of the ladies seem to know either. After 40 minutes I asked a passing nurse what we were to expect when she discovered that I was there to be admitted she told me to follow her. I found myself in a ward with only three other people. Two of them, a mother and daughter, were sitting in a bedless space waiting for the father to complete surgery. The other person was a patient intent in listening to his radio. I found I had a television which was free, unlike the ones I’ve been offered elsewhere. Eventually the mother and daughter were called away and I was left with my fellow patient who was by this time singing along to his favourite style of music. Fortunately I’d brought headphones so was able to plug them into the TV and watch something entertaining accompanied only faintly by howls and caterwauls from my companion. To my great relief my companion eventually ran out of steam. I was able to make myself comfortable on the adjustable bed and slept quite well.
14th April 2023
Early the next morning I was brought towels and asked to shower and wash my hair — somewhat difficult with one hand but I managed reasonably well. However, controlling the spray was difficult but it least the washroom and toilet got a thorough hosing down. Then in my stylish hospital gown, hopefully not revealing too much of me that others would not wish to see, I waited on the bed for my pre-op briefing.
First to arrive was the anaesthetist, a very affable man called Dave. We got on well and my answers to his questions on my state of health led him to ask, “Do you work in medicine?” I replied that I’d been doing this for 14 years and had obviously picked up the lingo.
Then it was the turn of one of the surgeons, Jerome. When he discovered I played guitar he assured me that I would still be able to do that after the operation. Even if my arm didn’t quite straighten — which was concerning — I’d still be able to handle the fretboard. My mind was taken to the great guitarist of the fifties and sixties, Les Paul. Having been involved in an accident he came round from a coma to discover that the doctors had set his badly broken arm so that it would be permanently straight. He demanded they reset it so that it be able to hold his guitar and spent the rest of his life with his left arm bent. Would I end up like that? If so would I ever be able to play like him? I don’t think so.
I didn’t have long to wait before two porters arrived with a machine to take me and my bed to the operating theatre. On arrival the nurse that had accompanied me from the ward looked at the names of the doctors who would be carrying out the operation. “You’ve got the best team,” she said. That was reassuring. Here I was in the world’s leading orthopaedic hospital with the best team. What could go wrong?
It must have been about 3.30 in the afternoon that I came round to find myself in excruciating pain. I began moaning and was soon surrounded by a doctor and some nurses. They asked me various questions as they tried to puzzle out what the problem was. It was about 45 minutes before they sussed it. At one point during that time I had a strange experience. I had been using a pain control technique involving breathing into the area of the body which was hurting and breathing the pain out. I did notice some brief respite at the end of breathing out, especially in that short space before I breathed in again. During such times I was able to connect with, what might be described as, my vital life energy, only briefly I stress, but enough to know that I would get through this. Eventually an anesthetist named Tamas brought in an ultrasound machine. With it he was able to guide a needle to the source of the pain and inject a local anesthetic. This brought swift relief and soon I was moved to the High Dependency Unit, which is a unit one lower than the intensive care unit, to monitor my recovery before letting me loose on the ward.
I had a comfortable night although I didn’t get much sleep. Each bed was screened off from its neighbour and there were patients who needed to be tended regularly which involved a lot of activity. But that wasn’t the problem. We were all wired up to monitors and a number of them bleeped continually like nesting chicks demanding food. Unfortunately nursing staff seemed too busy with their computers to turn them off or reset them. Not their fault I suspect, but that of the overburdened admin system whose demands for checks and double checks are even more frequent than the chirruping monitors.
The next morning the pain began to return. A doctor was called who prescribed morphine. I suggested that I didn’t want to treat the symptoms but to find out what the cause was and therefore asked if I could see one of the surgical team. This request was agreed and fellow guitarist, Jerome, appeared. He decided to get an x-ray to make sure that everything was as it should be. He also checked my sling and as he did so I heard a click. Immediately my arm felt a little more comfortable. Clearly the fastening on the sling had come undone. The x-ray was quickly done and revealed no anomalies. I was very pleased that I didn’t so readily accede to taking yet more morphine and vowed never more to allow doctors to treat my symptoms without making some attempt to understand the cause of the problem.
Later that day I was told precisely what they had done. Two inches (5 cm) of bone, where the tumour was, had been removed from the top of my humerus, my shoulder joint had been replaced and a new humerus knuckle had been plated to the old bone.
15th to 18th April 2023
The following morning I was paraded through the hospital corridors to Ward 12 where I was to stay until my release, possibly on 19th April. There was not a great deal of camaraderie among the six of us on the ward. I was the only one who had any mobility since the others had all had operations on their legs or backs. The guy next to me seemed to be very uncomfortable and not in any mood to communicate. On the other hand, the man opposite, named Frank, passed the hours by making the nurses laugh — and they did laugh a lot, which was so good to hear. He did tell some cracking jokes and I was very pleased that I’d not had an operation on my abdomen or chest, for otherwise I might have done myself some serious damage.
One day my neighbouring patient had a visit from his family including two grandchildren. They were all lovely and it cheered him up no end. After they’d gone I had a conversation with him during which I said what a lovely a family he had. He shed a tear. He’d missed them so much, he told me, and felt so loved. As I left him he thanked me for recognising how lovely they all were.
On another day two female students from Aston University asked if they could interview me about my experience of hospital. We must have spent about an hour together as I shared experiences and thoughts about hospitals, alternative treatments and bureaucracy gone mad. Their eyes lit up several times, especially on one occasion when I mentioned that, as a patient, I didn’t need a commentator to tell me the state of the game but a coach who would help me improve my play. I hope those little tidbits might influence the way they approach their careers as doctors.
Before discharge a question that every patient is asked is have you had a poo, though perhaps not quite so colloquial terms. On my first visits to hospital although this question was asked nothing had been offered to alleviate the perennial post operative problem of constipation. So I was delighted that the Royal Orthopaedic offered laxatives and stool softeners as standard. Unfortunately, and presumably for the safety of patients, the medicines provided were not powerful enough to help me much, though I did manage to do the necessary the day before my discharge, and that seemed to satisfy the requirement. But the reason I was able to perform was because I had taken in my own laxatives which I knew would work.
Two days before my expected discharge the nurse who came to make my bed told me I’d be going home that day. This was more of a shock than a surprise and presented me with some difficulty. How could I make arrangements for someone to get me at such notice? The nurse said not to worry the hospital would work something out. Later, after a visit from my doctors I was told I would be going home the next day. Still earlier than expected, but manageable. I rang Elizabeth and she was able to find friends who would come and pick me up.
That evening Frank got news of my immanent departure. Typically he said, ‘I hear you’re leaving. We must have a party.’
‘Your place or mine?’ I asked.
Frank grinned, ‘Oh yours I think, ‘ he replied. Then his eyes went to the row of urine flasks standing in the window and added, ‘I’ll bring a bottle.’
29th April 2023
Coming home has been the beginning of a steep learning curve. The hospital had provided me with quite an array of painkillers: morphine, codeine and Ibuprofen as well as tablets to counteract their side effects, notably constipation. I provided my own paracetamol. The periods between taking individual tablets varied between six hourly and four hourly with some only to be taken three times a day. I decided I’d make up a log sheet to show how often I should take each one and the times I did take them.
The laxatives (Senna) and stool softeners did little for me and I had to resort to stronger means. Even so it took several days before very much happened, but then the relief was greater than that of Mafeking. (In case you’re interested I used Dulcolax and the supplied stool softener Dioctyl (it seems that DulcoEase is very similar). From bitter experience it may take several weeks after a major operation before the bowels settle back to normal. We just have to drink plenty of water, eat bran and prunes, stock up on toilet paper and wet wipes and be patient. One thing I did discover was that straining overmuch can produce an anal prolapse, which doesn’t bear thinking about. I think my lifetime habit, and that of many people I suspect, though have no way of proving it, of bending forward to pass the stool may cause a problem. Sitting more upright seemed to help but what’s best I found was rocking to and fro. This seems to bring other muscles into play as auxiliaries to those designed to do the job. (Sorry for the intimate detail but this is an important issue for anyone having an operation and needs talking about. I’ve never had any advice on this from doctors or nurses. Maybe we should set up a Facebook page, ‘Constipation Anonymous’).
Pain in my shoulder and back was a problem mostly at night. Having to sleep in one position meant that I sometimes I needed to move from the sofa to my reclining chair and back again several times. I eventually found a more comfortable position on the sofa by putting scatter cushions under the seat cushion so that it was angled upwards which stopped me from sliding off. That helped considerably for a while but then my left shoulder blade began to ache after a short while and I would have to go back to my chair.
Another problem brought about by spending so much time seated was that I got a sore coccyx and had to buy an inflatable doughnut cushion. This helped even though it wasn’t the most comfortable way to sit. I thought back for to my five days in hospital where I had an adjustable bed and began to scour the Internet for a second hand one. I found one very quickly on eBay just down the road in Hereford. The Force was with me. A nearby friend agreed to collect it using his Land Rover and trailer an he and another friend installed it for me.
I’d harboured the hope that the new bed would enable me to instantly replicate the sleeping experience I’d had at hospital. No such luck! It took me over a week to find a position that enabled me to spend an entire night in bed. Initially it was a couple of hours before I woke up with pain and returned to my reclining chair downstairs. A moment of revelation came when we stayed overnight with one of my daughters and I slept in their recliner. I noticed that the foot rest brought my feet a little higher than my head. When I got home I tried a new adjustment that made a great improvement. However, although I could stay in bed longer, I was still having to get up during the night and go back to my recliner where I would sleep the night out. After a few days of doing that I found I could go back to bed after an hour and sleep comfortably. On the tenth day I managed to spend the whole night in the bed without pain. Even so, having to lie in one position is a continuing problem and I found I was waking up quite a lot and sometimes having to read myself back to sleep. Another problem was having to pee a lot at night and I wondered if this might have something to do with the laxatives. I know my PSA reading is okay.
5th May 2023
Today I had the clips removed. Just before taking off the 10 inch sticky plaster the practice nurse said, ‘this may hurt.’ It didn’t, much to my surprise, and hers. Then, plaster in hand she stood gazing at the wound and said, ‘Wow! I’ve never seen anything as good as that before.’ An array of shiny clips ran down the eight inch wound like a zip faster. She removed every other one to ensure I didn’t start leaking but all was well and she kept muttering how clever a job my surgeons had done, which was, of course, most gratifying.
12th May 2023
Today I had my physiotherapy review. Yippee, I was finally going to get some help with exercises. A very talkative, friendly young man led me to a long room containing stalls each screened with a curtain. This arrangement meant that we could hear every word that was being said in the consultation next door. And I thought privacy and confidentiality were ethics of the NHS Trust! The physiotherapist and I got on well apart from my hearing not being good enough to handle his accent most of the time. He told me that what I'd been doing was fine and gave me some adaptations to the exercises designed to lead me to the next stage. Unfortunately my next appointment could not be until 6th June but he added me to his cancellation list. Clearly, due to restricted funding by successive governments we've reached a critical low in staffing.
15th May 2023
I've realised that 17th May will be my 6th week after the operation and the end of permanent sling wearing. I'm looking forward to a grand sling burning ceremony — perhaps with barbecue, but I think that's a little way off yet. My arm is hankering to be free.
I phoned the physiotherapy department to ask for advice on the next stage in case a cancellation appointment doesn't come up. My physiotherapist phoned back. Unfortunately his voice on the phone was even more unintelligible to me than it had been face to face. I asked him to email me.
17th May 2023
I saw my oncologist today. From his perspective my fatigue, loss of appetite and breathlessness are all symptomatic of the multiple tumours in my body. His only solution is chemotherapy which may slow things down for a while. On the other hand my present state maybe more the result of the trauma my body has experienced since 10th March. I’ve lost a lot of weight and, more seriously, muscle. I’m not yet willing to concede that I may be entering the final stages of this disease. I think I will know when my time is imminent.
18th May 2023
Still no email from my physiotherapist so I phoned the hospital and asked the receptionist to chase it up. I also mentioned the problem I had with understanding this man on the phone. She told me that the person dealing with it was not in today but she get back to me.
19th May 2023
The physiotherapy receptionist telephoned me this afternoon to say that she had spoken to the person in charge and that I had been allocated a different physiotherapist and that he could see me on 1st June, a week earlier than expected.
1st June 2023
My new physiotherapist was extremely efficient. He gave me a thorough physical examination and asked a lot of questions. Then he got me to show him what I could do and I told him what I couldn’t do. From this, as well as my existing exercises, he gave me a whole raft of exercises which were a lot more in line with what I was expecting. However each of the new exercises I have only to perform for three iterations each and only three times a day. It was a little worrying that he admitted that he had not dealt with such a case before and that the Royal Orthopaedic Hospital had not sent any post operated notes or x-rays. This meant that he was working in the dark. He told me that hospitals have a very bad reputation for communicating with each other. Another damning insight into the inefficiencies that beset our NHS. However, I came away feeling more confident that I was on a track towards recovery.
28th June 2023
I saw my oncologist today. He still has no information from the Royal Orthopaedic Hospital so he had a look at the wound, complemented its efficiency, checked my lymph glands and said he’d see me in three months.
13th July 2023
Received a letter from Hereford Department of dermatology dated 3 July confirming that a recent examination of a keratotic lesion on left my ear is cancerous — a suspected SCC (squamous-cell carcinoma). An appointment will follow to have it excised under local anaesthetic. My skin has been erupting for some years now and various visits to the doctor have indicated senile warts and UV damage. My grandmother called me a ‘little toad’ when I was naughty. Perhaps Karma was catching up with me! This is the first eruption that’s got serious. If it is an SCC that it has a higher than average chance of metastasis. I spent time with a neighbour recently who had lost three quarters of his ear and now has metastatic cancer spreading to his jaw. I hope it doesn’t come to that.
18th July 2023
At last I saw the surgeon. I entered the consultation room and took my jacket off. Both the nurse and the surgeon commented on how good a movement I had in my arm.
“Really?” I exclaimed.
“Aren't you pleased?” the nurse replied.
“I'd like a lot more than this!” I said.
The atmosphere in the room changed.
“Sorry,” said the surgeon. “That's probably the best you can expect.”
My heart sank. In the three months since the operation, although I've been fastidious with my exercises and made some progress, albeit very slight. A lot of achievements have been in finding ways around the problem rather than getting more functionality in the arm. My surgeon had certainly told me about major loss of function of the shoulder, and this was spelled-out in highly technical terms in a letter to my doctor, but he didn't mention 'arm'. Maybe I should have asked more questions. So now I have to see how by how much I can beat the expectations of my doctors. For this I shall rely on my physiotherapists and kinesiologist. At least the X-ray showed that everything was as it should be and I was given an email address of someone who would ensure a copies of it and the post-operation report got to my physiotherapist and oncologist.
19th July 2023
I saw my kinesiologist today and suggested that in view of the news that came out of my consultation yesterday we concentrate on trying to alleviate the pains I get across the top of my shoulders and in the middle of my upper back. These are inhibiting me from exercising as fully as I think I can. She also gave me a homeopathic remedy to help with energy levels and protect me against radiation from screens since I spend so much of my day in front of them.
I drove for the first time in for the first time in four months, with Liz, my intrepid wife, and Mal, my terrified sister. It was only for about 3 miles. I was safe, but suffered a lot of pain throughout the evening. Driving is now on the back burner. I can, however, play most of the guitar chords I need for the songs we do in the band, though it means using a more limited range of shapes and major revisions to solos. Time and practice will perfect that I’m sure.
I had a telephone call from the Royal Orthopaedic Hospital to advise me that they had a cancellation for hydrotherapy that had previously been arranged for 28th August. I could attend an intensive week at the hospital from the 7th to 11th August. Both my nurse and surgeon and the Royal Orthopaedic had been keen that I should take up this offer. I am to be given a bed in the hospital, which, though not as comfortable as a B&B, will be free.
I wrote to my physiotherapist today explaining the outcome of the consultation on the eighteenth and suggesting we could need to change our approach to the exercises I’m doing. I’m continuing to do the exercises but it may well be that what I need is to focus on strengthening the forearm, which is still quite weak. That may well help me to drive comfortably though I may have to consider getting an automatic car. It may also help with the guitar playing and reduce the amount of crockery I break through not being able to hold on tightly enough.
26th July 2023
I went to the swimming baths today and practised some movements while up to my neck in water. I used some of the physiotherapy exercises as well as some of my own that I thought might help strengthen my right forearm. The water was cold so I didn’t stay more than 15 minutes. One thing I hadn’t considered was, how, with a partly disabled arm, difficult it would be to get clothes to and from the locker in the changing room. Next time I’ll take a bigger bag.
28th July 2023
I remarked to Liz a few days ago that I thought I’d turned the corner. I’ve been feeling much closer to my old self that I have done since before the I broke my humerus in March. Today was a test of that. I decided to do a little gardening. I cut the small front lawn yesterday and today did the rest of it. I dead-headed a few plants then proceeded to cut back our very overgrown hedge. I went on to strim about 10 yards of the drive. It took me about 40 minutes and I felt really good. My shoulder and back were hardly aching at all.
29th July 2023
Today I tidied another 10 yards or so of hedge and cleared out a lot of brambles. I took out several extraneous young ash trees and the like using my branch cutters. I was able to steady them with my left hand while bracing one handle against my left thigh and I slicing with my right arm. I also mowed the back lawn. In all about an hour’s work with a coffee break in between. Still feeling good. I think I’m getting my old vitality back.
7th to 12th August 2023
Monday
At last I'm off to the Royal Orthopaedic Hospital, Birmingham, for a week of intensive hydrotherapy and physiotherapy. My train was cancelled so a friend and neighbour drove me. I'd received no letter confirming my admission so before we left I phoned the hospital to check what to do on arrival about admission to the ward and where I had to go for my initial assessment. I was told to report to ward 12 and that they would tell me where to go for the assessment. On arrival I found that ward 12 was closed! A passing nurse took my name and went away to look me up. Apparently I was to report to Ward 2.
I reported to the admin station there and enquired of a lady who seemed to be about to leave for the day. She put her handbag down, looked me up on the system and told me I was in room 6, and asked a passing nurse to show me the way. This was a preview of the kindness and willingness to help I would meet all week.
I was amazed and delighted to discover that I had a large private room overlooking a small shady park. The ensuite was large too, much better than any hotel. There was a small TV and an online facility on a jointed arm that I could pull down and use while lying in bed. I found I could log on to our Amazon Prime account. Wow! This was not going to be as difficult a week as I'd imagined.
The physiotherapy assessment was very thorough and the movements I could make with my left arm were measured fairly precisely. I was surprised that this had not been done at Hereford. Although they had been working in the dark through lack of information, I would have thought a more objective measure of my abilities than seeing what I could do without measuring it would have been helpful.
Mid afternoon I went to the pool for my first hydrotherapy session. I met the two physiotherapists I'd be working with during the week and got on well with both from the outset. Both are excellent communicators and have natural social skills. It felt like I'd known them for ages. Walking down into the pool felt intrepid. My brain didn't cope well with my legs moving in water especially as the diffraction didn't help my brain to connect with what I could see. I felt rather unstable. The water was beautifully warm though. In water I can get much more movement in my arm than on land, but have to be careful not to be too ambitious or it hurts. As I used various ‘toys’ to swing my arms about with I found that keeping just within the pain threshold is the key. As I got out of the pool I was told to put my trunks in a bucket so they could dry them ready for the next day. That was thoughtful.
Tuesday
An energetic day today. Two 30 minute Hydro sessions and a 30 minute physio session sandwiched between. It's been all of 30 or more years since I last swam and I discovered I can't even float on my back any more! The physiotherapists work with two of us in the pool at the same time and I share it with a young lady getting her leg back into working order after a serious break. I slept like a log that night.
Wednesday
This morning was free so I caught the bus to Northfield and walked up to the station to check if my train would be running on Friday. There has been a rail strike this week but I could get no information about it on the internet and the booking agency’s telephone line was jammed. The man in the ticket office assured me that trains would run normally on Friday, which was a relief.
Still with time to spare I caught a bus to the University Campus and visited the Barber Institute art gallery. It was not the uplifting experience I'd hoped for. The eyes of all the portrait subjects were so sorrowful, except one, a 17th century fellow who looked rather pleased with himself. It was a self portrait.
Back to hospital for a very good lunch. The food here is much better than any other hospital I've been in. It was no surprise, then, to discover that it's all cooked on the premises. However, the vegetarian options didn't entice me. Maybe my body is still craving protein. My stamina is still low. On returning from my trip this morning I was aching all over and I felt quite shattered. I was glad to have a lie down before lunch and going for my physio session. That session was challenging. It stretched bits of me that had not been stretched for a very long time and they didn't like it. I had to stop several times to allow the discomfort to subside. But I'm determined to regain as much movement as I can and willing to suffer for it if need be. I reminded myself of my cycling days when, while riding up a long, steep hill, I'd often reach a point when I realised the pain wasn't getting worse and was bearable. The only thing to do was to dig deep and keep going. It was a good lesson for life.
Thursday
A doctor from my surgeon's team came to see me this morning. He reassured me about getting more lateral movement in my forearm. He did a couple of tests and said that I have the movement but not the strength. It's that I need to work on.
Another tough day today with two 30 minute sessions in the pool and 30 mins in the gym. I have a good recovery rate though and no lasting aches and pains. One more Hydro session in the morning and I'm on my way home.
Friday
The final assessment showed some improvements in movement. Now I have to continue to work on my own using instructions my physiotherapist is sending me.
I'm gad I took a taxi to the station. If I'd taken the bus I'd have been even more exhausted than I was by the time I arrived there. It's been a hard week and my stamina doesn't seem to have improved.
It was so good to get home. Liz has felt very lonely at times, despite friends rallying to her. This has been the longest time we've been apart in 29 years
Saturday
Early to the Department of Dermatology in Hereford this morning to have the small skin cancer removed from the top of my left ear. A doctor and two nurses attended me. They chattered all the way through the procedure but involved me a good deal. I was surprised to find I had something in common with each one of them. I take comfort in little synchronicities like that. I've observed consistently that they accompany good outcomes. I guess the ancients would have called them omens. The ear looks as if it should heal without much sign of the operation, unlike the person I met recently who had only enough ear left to keep his specs on.
By the end of the afternoon the local anaesthetic wore off and I took some paracetamol which eased it I had to take more overnight but since midday on Sunday there is only mild discomfort, insufficient to need medication. I’m very pleased that it has settled down so quickly. However I do have a massive loss of energy still and this is a considerable difference to my energy levels leading up to my week in Birmingham. I think the exertions of the week may take some time to recover from and I will have to take it steady for a number of days. I shall rest for the weekend and start my physiotherapy exercises on Monday.
Reflection: I checked my blood pressure at home and it was on the low side. Looking at the trend chart on my computer it’s been heading down consistently since being prescribed Alfuzosin for my enlarged prostate. I found that low blood pressure is a side effect though that didn’t appear on the list of side effects in the box. That mentioned dizziness, which can be related to low blood pressure, but I’ve had none of that, also fatigue and constipation. So I decided to stop taking Alfuzosin and put up with frequent visits to the bathroom. I can’t function like I feel at present. The next day I felt much better. I did two hours band practice in the morning, playing guitar, entertained friends in the afternoon and attended a meeting in the evening. I couldn’t have done all that the day before!
The experiences of this week have filled me with gratitude for the kindness, thoughtfulness and willingness of everyone who has attended my needs: the cleaners, doctors, the many nurses, the nursing assistants, physiotherapists and their support staff, porters — every one I met has dealt with my needs with no sign of reluctance and have often gone out of their way to help, sometimes with very unimportant things. I found these qualities too in bus drivers, a lady on the bus stop who gave me guidance, a taxi driver and a young women behind the counter of a cafe who found out directions and came specially to my table to give me the information. It confirmed my contention that most people are doing good things to most other people most of the time. Unkindness is an anomaly.
16th August 2023
My ear is sore and a little clear liquid is seeping from the wound. Should I see the nurse? In a state of indecision I consulted my body. Standing quietly until my mind settled, I asked the question, "Should I get this attended to?" After a moment or two of hesitancy my body swayed forward, confirming a yes. However, I've not been very steady on my feet recently so I decided to check the decision with my pendulum. I took it into my bedroom, sat quietly for a while, then put the question to the pendulum. It began circling, indicating a 'yes'. I still didn't ring the surgery, despite the double confirmation and after a while the discomfort in my ear subsided and I got on with my day. Could this testing malarkey be trusted? Was it all hocus pocus after all?
17th August 2023
I had a night disturbed by discomfort in my ear. In the morning I got Liz to look at it and she said the ear was inflamed and there was blood and clear liquid coming from the wound. I didn't have a temperature though, which was a relief. I rang surgery and got an appointment the same morning. The nurse got a doctor to look at it. She took a photo to send to Dermatology and prescribed some antibiotics. Malarkey? Hocus pocus? I shall not mistrust my body's wisdom again. But I will use both forms of enquiry for confirmation because I can no longer have full confidence in my stability.
21st August 2023
The nurse confirmed that the antibiotics seemed to be doing their job and suggested I smear Vaseline over the congealed blood to loosen it.
24th August 2023
Not having heard anything from the dermatology surgeon I saw a doctor at the surgery. We went through the history of my lipoma and he asked a very pertinent question: "How could the doctors who saw me be sure of their diagnosis? The tissue extracted during the aborted operation on a supposed sebaceous cyst had not been sent for analysis and no scans had been taken. Why didn't I think of that? Again I had just put blind trust in my doctors.
He put in a two week appointment application and told me to ring the number on the form the next day.
25th August 2023
I phoned the appointments people but they knew nothing about me!
9th September 2023
A letter arrived from the doctor at the Dermatology and Plastic Surgery department dictated on 6th September. It stated that my doctor's referral had been sent to the Trauma & Orthopaedics before it was redirected to 'Plastics'! He said that I should be put on a two week referral to Queen Elizabeth Hospital, Birmingham's Sarcoma Unit.
15th September 2023
Today I had an ultrasound scan on my head.
18th September 2023
My doctor phoned me to say the results of the ultrasound scan were concerning. There appears to be vacuolation in the lump on my head. It seems that this can happen in lipomas but also happens with cancers. I guess the next step will be a biopsy. I do hope they can do that in Hereford.
25th September 2023
Someone from Queen Elizabeth's Hospital, Birmingham rang to say I have an appointment there at 1 pm on Friday. I looked at train times to get there and would have to catch the 8.15 am bus from home to get the 9.35 am to Birmingham, arriving there at 11. Difficult but not impossible, although I don't know how my back would hold up. I emailed friends and almost immediately got replies from four, none of whom were free on Friday, although one did say he'd postpone his dental appointment if I was stuck. What kindness! I may have to catch the train.
27th September 2023
I received a letter from the Department of Dermatology at Hereford in which the surgeon who performed the operation on my ear informed me that in exercising the lesion from my left ear he had left only a margin of 0.7mm at the preferred margin is 1 mm. He informs me that this would require further surgery and that he would discuss it when he sees me on 6 October.
I walked to the shops and back today without major pain in my shoulders. Later I walked around to a friends house and back, again with only a little discomfort. Last night I slept with the bed less steeply inclined and for several hours on my side. Could it be my having had to sit up to sleep that's caused the ache in my shoulder? I shall continue to experiment. When I role my shoulders back the crackling sound is audible — rather like bubblewrap being popped.
28th September 2023
Liz took a call from Hereford hospital saying that |I'd got an appointment next Tuesday about my lipoma! I rang and left a message. Midday I rang again and the secretary answered. It looks like in the panic last week over who was referring me to where, two referrals gad been made. However the secretary told me that her consultant would have referred me to Birmingham anyway, so we agreed to cancel that appointment and go to Birmingham on Friday. She said she would not cancel the referral and asked me to phone her to let her know if I needed stillto havr an appointment at Hereford.
29th September 2023
Since I cannot drive at present and Elizabeth is unable to drive long distances, I arranged for a friend to take me to Birmingham. The self-registration system didn't recognise me so I booked in at the reception desk as was told to sit and wait until called at Area 2. Five minutes before my appointment my name appeared on the board directing me to waiting area 1A.
The consultant saw me for 10 minutes and said I'd need to come back for a PET scan and MRI scan. I asked if this could be done at Hereford since it costs £50 for me to travel to Birmingham, inconveniences my wonderful friends, takes up a whole day and increases my carbon footprint. He replied that since I'd been referred to him he couldn't request scans from Hereford! When I got home I phoned Mr. Sheppey's secretary who was able to book me in to see him on 3rd October at a later time. I am hoping he can arrange for the scans to be done at Hereford.
30th October 2023
Having considered the letter from the surgeon at the Dermatology Department I wrote this letter to the surgeon:
I was surprised and disappointed to receive your letter of 24th September reporting that the margins of the excision you performed were too narrow, albeit by a relatively small amount. My understanding of this situation is that, if during an excision, cancerous cells are punctured, carcinogenic material can get into the blood stream. This can lead to metastatic growth in other parts of the body. Since it is possible that a wide enough margin has not left between healthy cells and infected cells, I believe there is a potential danger of this happening. If I am correct in that, this could be a serious situation. In the light of this, and since you require my opinion on further surgery on my ear, I feel that I need a second opinion to help me decide. I want the doctor giving the second opinion to examine me, please, not to make decisions based on the notes only. I would be grateful if you would arrange this. In view of this, you may prefer to postpone my appointment on 6th October, but I am willing to attend if you think it will be useful. Please let me know.
By 17th August my ear felt uncomfortable, had bled and was weeping a clear liquid. I saw our practice nurse at Weobley on 18th and she called in a doctor to look at it. Dr. Holly Vaughan took a photo and sent it to you but I have had no feedback on the result of that communication. A course of antibiotics cleared up the infection and the application of Vaseline helped clear the dried blood. The ear is still uncomfortable to touch and especially around a notch where the wedge has not healed together.
3rd October 2023
Today I saw Mr Sheppey who could not understand why I have been referred to him. It seems that he has something to do with orthopaedics though I cannot find his name on the Herefordshire County Hospital website. I explained my problem and he suggested that the consultant at Birmingham right to my oncologist since my oncologist comes from Cheltenham where PET scan can be performed. I have therefore emailed the oncology secretaries and asked them to ask my oncologist to do this.
6th October 2023
I saw the surgeon today at the Department of Dermatology at Hereford. He was obviously concerned about the content of my letter. We engaged in a lengthy conversation about the pros and cons of the situation and he was able to allay my fears somewhat. I therefore decided not to seek a second opinion but to proceed with the operation which he is booking in to take place in January 2024.
17th October 2023
I received a copy of a letter to the consultant sarcoma surgeon at Birmingham from my oncologist. In it he said that he had arranged an MRI scan to be done at Hereford but could not arrange a PET scan at Cheltenham because "this would need to be prior discussion/approved by the relevant MDT. I immediately emailed my oncologist and told him about the inconvenience of travelling to Birmingham and that my wife could in fact drive me to Cheltenham which was an easier drive and less mileage, and asked him to arrange the PET scan at Cheltenham.
20th October 2023
I received a telephone call telling me there's an MRI scan had been arranged at Hereford on Sunday, 22 October.
21st October 2023
Today I received a letter from the University hospitals Birmingham telling me I have an MRI scan of the head on Friday, 27 October. I tried to ring the Department to cancel the appointment but could not get through on either of the telephone lines provided neither of which offered an answering service. I therefore telephoned the secretary of the consultant sarcoma surgeon and see said she would cancel the appointment for me. Why don't hospital departments communicate with one another? A failure of admin yet again.
23rd October 2023
I saw a GP today and mentioned a problem with constipation. He prescribed Lactoluse and gave me a TIF kit to test my faeces.
25th October 2023
I received a letter from Cheltenham hospital telling me I have an appointment to have a PET scan on 26 October. Fortunately we don't have to cancel anything in order to attend such short notice.
31st October 2023
Today I received a text message from my GP saying that the FIT test had come back high and that he was sorry to have to break bad news to me but it seemed as if I may have more tumours in my bowel. The Cancer Research website says:
"FIT (Faecal Immunochemical Test) is a test that looks for blood in a sample of your poo. It looks for tiny traces of blood that you might not be able to see and which could be a sign of cancer.
Traces of blood in your poo can be caused by other medical conditions and doesn’t necessarily mean you have cancer. But if it is cancer, finding it at an early stage means treatment is more likely to work."
The words, ". . .doesn’t necessarily mean you have cancer." Gave me some comfort. When I saw the GP concerned a couple of days later I told him that I didn't think telling somebody they may have bowel cancer by text was good patient care. He should have phoned me. In any case since I had been constipated and straining to pass stools it was highly likely that there would be traces of blood in my faeces. I guess the PET scan and CT scan will reveal all when I see my oncologist in November. I'm not going to panic. The Lactoluse is doing a good job.
10th November 2023
Not having heard anything from Birmingham about the results of the scans I phoned the consultant's secretary. She referred me to a nursing team who told me that they had received the scans and that I was being referred back to the team at Hereford. I can only assume that this means that the lump is not a sarcoma and hopefully can be dealt with by the local dermatology department.
13th November 2023
I had a two hour band practice this morning and felt tired afterwards but good. I've been walking regularly, usually a mile, feeling generally better than I have for the last eight months. I'm eating well, usually clearing my plate, and sleeping well.
This afternoon a friend drove me to Bromyard to view a car with automatic transmission. I test drove it and decided to buy.
15th November 2023
The car, a Mercedes A Class with only 53,000 on the clock, was delivered today. It's good to be able to drive again. It gives me some independence although Liz is apprehensive about driving such a pristine vehicle.
17th November 2023
Today I walked at least an extra half mile, the furthest I've been in the eight months. Although my shoulders was still achy at the end they were not so bad that I couldn't continue into the village to do a little shopping. They quickly recovered after I got home. I'm feeling something of that old joie de vivre. I really am sleeping much better. It seems as if the saw palmetto capsules that I've been taking to reduce the enlargement of the prostate may be working at last. This week I have only had to get up once a night to pee consistently and I'm waking up a little later too.
19th November 2023
I weighed 11 stone (70 kg, 154lbs) today; only the second time since 5/5/23. My blood pressure is up: 133/71, pulse 66. Not serious and probably a reflection on my lack of exercise.
22nd November 2023
I saw my oncologist today. He told me that the results of the PET scan showed that it was possible that the lipoma had become cancerous. He is referring me to a colleague to consider whether radiotherapy might be an option. I asked if the diagnosis of secondary tumours was certain and he indicated that it was the opinion of his professional colleagues that it was possible. I said, “So it's a hypothesis not a diagnosis.” He disagreed. I said that since no biopsy had been done it hadn't been proved empirically that tumours existed and asked if that was scientific. He argued it was. I remain unconvinced. Doctors too easily mistake educated guesses for diagnosis. Their excessive workloads and for some, their egos, limited their being able to do what's necessary to prove their hypotheses before prescribing treatment. This means they sometimes have to experiment with medication before they find out what works. In most cases this may not be dangerous, but there are occasions when it is.
I asked for a copy of the PET scan report, which was printed off for me. It's full of complicated medical jargon, some of which looks alarming. I will need to get a GP to interpret it for me. As a result of the consultation no immediate action is proposed and I will be seen again in three months time. I told him about the positive result of my FIT test and asked if there was any evidence to support that. He told me there was none and suggested I stop taking asprin for a week and have another test, which I arranged as soon as I got home..
23rd November 2023
Today I walked three full miles. By the end my shoulders and back were achy but I soon recovered. I'm sleeping much better and am consistently only getting up to the loo once a night. I put this down to the Saw Palmetto capsules: 1 x 400 mg per day over the last couple of months). I'm eating better too, usually clearing my plate. Quite a few people have commented on how well they think I look. I tell them it's the rosecia!
18th December 2023
I got the results of my FIT test which were negative this time.
31st December 2023
Liz and her daughter, Antonia, who has spent Christmas with us, tested positive for Covid. Fortunately I tested negative so was able to be head cook and bottle washer while they recovered.
3rd January 2023
Liz took a call about three weeks ago from a doctor in Cheltenham confirming that, at the request of my oncologist he was prepared to provide radiotherapy on the lipoma/sarcoma at the back of my head. Since I've heard nothing since I emailed my oncologist asking him to progress this situation.
19th January 2024
Yesterday I had the operation on my left ear to correct the problems that arose from the initial operation in August. This time the surgeon was a bit less chatty and the operation went well. I had some post op pain in the evening and took paracetamol and Ibuprofen which settled it. Today it's a little sore but doesn't need analgesics.
I haven't been able to exercise much because of commitments and the very cold weather, and I haven't over indulged much over the Christmas period. My weight remains stable and hovers just below 11 stone (154lbs, 69.9Kg).
Still no reply to my email to my oncologist. So I phoned and discovered that the secretaries had changed their email address! My email was not reported undelivered So I assume the address is still on the system. They could have created an automatic reply letting people know the new email address!!
18th January 2024
The practice nurse took the dressings off my ear and declared the job well done.
24th January 2024
I saw my oncologist today and got him to go through the pet so/can report and explain everything to me in detail. The situation is not as bad as it had appeared to be to me. Nothing needs to be done about any of the sites mentioned, except the lipoma/sarcoma. I'm being referred to the doctor in Cheltenham.
7th February 2024
On Monday I had a call from Cheltenham Hospital asking if I would be available for a consultation in Cheltenham on Wednesday. I quickly emailed friends and my good friend and neighbour took provided transport. I'm not sure I can yet drive 100 miles safely. I could get there alright but might tire on the way home. Also driving in the dark is difficult since reaching the head light dipper gets painful after a while.
We got to Cheltenham General Hospital on time, despite taking a wrong route at one point due to a lack of signposts to the hospital. Finding where main reception, which the person on the phone had told me to report to, was difficult. We found a parking spot and I went in. There was a small reception desk covered in large parcels where two ladies were busy talking to a delivery man. I eventually interrupted them and asked if this was the main reception. A lady redirected me to an area labelled The West Wing. We drove round and found a place to park. Inside I asked a volunteer where the main reception was and she asked which department. It seems there is no 'main reception' each department has its own! She guided me along a tortuous route to oncology, which was well sign posted. I entered a room but could see no reception desk. When I asked I was told it was in the next room and as I went in I saw the sign 'Oncology Reception' above the door but positioned in such a way that it could not be clearly seen on entering the first waiting area. By now I was 5 minutes late for my appointment. The receptionist eventually found my record and directed me to the radiography waiting area via a long corridor. I arrived at a waiting are which displayed the sign 'Oncology Unit' but nothing about radiography. I asked a patient and they confirmed it was the right area. I took seat. I was then 10 minutes late.
Like other waiting areas and corridors I'd travelled through, this one was tatty, with notices hurriedly stuck on walls and a board displaying doctors on duty with length of delays but labelled 'Monday', though which Monday was anyone's guess. None of this inspired me with confidence. After waiting half an hour I enquired of someone how I could find out what the situation was. She went away and a few minutes later a gentleman called me and took me to a consultation room. The doctor was very pleasant and talked through the pros and cons of radiotherapy. It was clear that, having seen the PET and MRI scans, and taken a quick look at my lump, he didn't think it would be suitable at this stage. In any case, renal cancer is not very susceptible to that treatment. We agreed to keep my lump monitored and I departed. 100 miles, for a 10 minute consultation which could easily have been accomplished over the telephone. My second experience of thoughtless administration. But Cheltenham General is undoubtedly the most tatty, poorly signposted hospital I've been in during my 15 years journey with cancer.
12th February 2024
I had a checkup with a Macmillan nurse at the Dermatolgy Department. She gave me a thorough body check and declared everything to be OK. However we got rather sidetracked when I mentioned a small, painful swelling on my right upper hand. She siad it could be excised but looked more like keratin, which is what fingernails are made of. She gave me a tub of Hydromol ointment to apply two or three times a day. I was told I could use it on senile warts of which I have several. If after a month or so it was still there, especially if it was still growing, then it would have to be examined more closely. That side track meant that she forgot to check my ear properly, which was the reason for being there! I had to return on the following Thursday to complete the check, which was satisfactory. By then the Hydromol had had a remark effect on some of the dry skin on the backs of my hands. It had disappeared completely.
22nd February 2024
I had phoned consultation from the surgery by 'persons unknown to me' to explain
that my cholesterol levels were a tiddly bit high but that I didn't meed to do anything about it.
19th March 2024
I had a follow up session with the dermatology surgeon who did both operations on my ear. He was very pleased with the outcome and apologised for getting it wrong. Has very interested in my book, looking it up online. I encouraged him to pre-order it.
23rd March 2024
It was the first public performance of the band this evening. We played two 20 minute slots and had a rehearsal before. We played fairly well considering the length of time since we last performed. A lot of people commented positively on the whole evening and some mentioned their amazement that I could play the guitar and harmonica at the same time. However, I was almost totally exhausted when we finished and I don't know how I got myself up the stairs to bed. It took me two days to recover.
4th April 2024
I attended the All Cancer Support Group in Hereford and had arranged to have my book available at a reduced price for members. We raised £55 for Yeleni Support and Therapy and I sold 10 books in 20 minutes.
22nd April 2024
I had an unexpected phone call from my oncologist at 5.30 pm. He told me that the latest scan had revealed a tumour in my brain and that I was to stop driving immediately. This was devastating news. We had bought an automatic car only six months before so I could drive again. We were looking forward to travelling a bit further than we'd been able to because we'd be able to share the driving. Now driving everywhere was on Liz's shoulders alone. In the autumn she is scheduled to have an operation to amputate part of a toe which means she will but unable to drive too. Thank goodness for dear friends, Community Wheels, supermarket deliveries and a decent bus service.
1st May 2024
I saw my oncologist today with the radiographer's report from my latest scan. The new tumour in my brain is small, about 1cm and is in the parietal lobe. This I understand from my own research may affect the sensitivity of touch, though at present it's having no discernable effect at all. I raised the matter of the apparent lack in the report on the PET scan of the tumours in the kidney bed and the pancreas but it seems that information was buried in the technical medical terms I didn't understand. However, most of my tumours (now in at least five locations) are not highly concerning. They remain relatively small and slow growing. My oncologist has prescribed a steroid, Dexamethasone. He suggested taking 4mg but I suggested I would start low, as my sister suggested,* and increase the dose as necessary. A lot of possible side effects to watch out for as usual. One might be as an increase in appetite, which would be helpful (I'm down to 66.8kg, 147.5 lbs, or 10.5 stone). But it may affect sleep, which may not so good, but I might live with that if it actually increases my vitality. However, I've refrained from starting to take the steroids in the hope that I can see a lady in Brecon who can test suitability of drugs or make an appointment with my regular kinesiologist.
I am finding I much more tire easily, in the last week or so. Until now I've been able to walk for about an hour using a walking stick to help balance my skewed skeletal-muscular system. This considerably reduces the ache in my shoulders, though I'm walking more slowly. I used to cover about 4.7 km in under the hour. Now it takes me an hour to walk about 2 or 3 km. But I feel invigorated, albeit ready to sit down and rest when I get home. I've recently been doing an hour of gardening now and then. I take a short break every 15 or 20 minutes, but accomplish quite a lot in that time..
* On page 13 of my book I said, “. . . my sister, now a retired gerontologist in America, told me what she had heard at a conference that she had organised for doctors about medication for elderly people. One of the speakers, a specialist in geriatric medicines, told delegates that elderly people should always start with a low dose prescription then build up if necessary. This made every sense to the audience and my sister’s local doctors all took it on board. It made sense to me too, but when I told my oncologist this he said, ‘With chemo it doesn’t work that way’. My view is that if he had started me on the low dose, my liver may have developed a tolerance. But I’m willing to be contradicted.”
8th May 2024
For weeks on end I've felt lacking in energy and in the last week, even more than usual. My body is achy and stiff, I don't walk well and I'm not very steady on my feet. Although I can'yt I can't say that I feel ill. While I'm sitting I'm OK but it takes a bit of energy to walk to the top of the garden and back. Even working on my computer I began to flag at around 4 pm. I was glad to make a cup of tea, rest in an easy chair and read a while. It's very easy to doze off too, though that's an age thing too.. But how much is old age and how much my condition it's difficult to say. Perhaps now now the alterations to the cloakroom are finished I'll be able to get more focused again.
I'm finding that I can't get anywhere near as much done in a day as I was doing only a few months ago. This is concerning, especially with the build up of work toward the release of 'What my Doctors Didn't Tell me About Cancer' on 1st July.
At a small tea party to celebrate the 80th birthday of one of our History Society committee members, all we octogenarians were given seats of honour around the table – within reach of the cakes! I managed to resist the cakes, although not the seat and that afternoon I did surrender to a slice of Genoa cake with my cuppa (green tea and red bush mixed).
11th May 2024
I've decided to start taking the steroids, 2mg daily taken with breakfast. I've been unable to arrange appointments for testing so tested myself by standing, relaxed, holding the bottle of tablets next to my abdomen. In a relaxed and semi meditative state I asked if it was safe to take the tablets, and waited. After a few moments my body began to sway slightly too and fro. Remaining as open as possible I allowed the swaying to go as it wished. It began to sway forward more strongly than back and soon the sway forward became more pronounced until I was not leaning back at all. I felt at peace and stared to take the pills. Only two so far, so no affect yet. I'll wait until they send me the blue card I will have to carry with me to show emergency services I'm not steroids, then consider whether to increase or to remain at the lower dose.
18th May 2024
Email to my oncologist:
"Having read the information about steroids I was initially cautious about taking taking them, and delayed. However, I did start taking 2mg a day on 10th May and result has been remarkable. By the following Wednesday I was feeling better than I had for the last year and my appetite returned. I've put on a1Kg. On the Thursday I thought I'd try a little walk, not having been able to attempt a longer one for the last month. I walked 2.8 miles. So, the results have been exceptional. Thank you.
Howeve"r, the NHS website warns that taking steroids for several months can cause osteoporosis and eyesight problems. It can also affect sugar levels, and although I don't have diabetes, I do get hypoglycaemia. To balance this out I do only have one adrenal gland. So in this context, will the Dexamethasone balance out any hormone deficiency due to the loss of an adrenal gland, or is there a danger of exceeding the safe dose after a few months of use? Will information about this come out of the blood tests that I've just had?
I look forward to seeing you in June.
20th May 2024
Reply from my oncologist:
"Please can you let him know, the dose of steroids I gave (2mg) is really a very small dose,
The usual dose we give to improve appetite is 2-6mg a day and maximum dose for patients with symptoms from brain tumours is 16mg/day.
We will look to reduce the dose slightly when he is next reviewed, can go lower than 2mg a day.
He has 1 adrenal gland and normally this produces adequate cortisol hormone but, in his case, the adrenal gland may not have been producing enough hormone recently.
Risks with steroids are higher with higher doses so we always try to use the lowest possible dose that is effective.
Not to worry about osteoporosis at the moment please as it is a long-term issue and we will check his sugar next time he attends."
19th May 2024
I started taking 2mg of Dexamethasone steroid on 10th May. Usually I had not looked forward to food, only ever ate one course and often didn't finish it. My weight was down to 10st 7lbs (147lbs, 66.8 Kg) the lowest it's been seen 1959. I'd had to have severeal pairs of trousers taken in. In the last year I've rarely felt well and my energy levels have been low.
On the following Wednesday I felt much better and felt and felt properly hungry. The next day I still felt well and decided to take little walk. Over the previous months I'd walked for an hour now and then but it wasn't regular and often I hadn't felt able to. That Thursday I walked nearly a mile and felt good, so carried on, and then on. I walked 2.8miles in 1.25 hours and felt tired, but good. I was really getting back to my old self.
Today, Sunday 19th May, for the first time since I can't remember when, I tucked in heartily to a three course meal! I even finished off a ccoffee buscuit my grandson left.Friends have told me that they have been prescribed 30 or 40mg of steroid, which sounds a lot. If the minimum dose has had the effect on me it has, what would I be like with 15 or 20 times the dose? Liz would be shopping for food everyday! No, 2mg is plenty, I think, and here's another factor: Since I've had only one adrenal gland since 2012, and though I've generally coped well until my replacement shoulder in 2023, I wonder if age may be taking its toll so remaining adrenal gland needs a little help.
I shall monitor the situation. I've written to my oncologist asking for information on the longer term implications of taking the drug and whether my adrenal gland theory is possible. I'll keep you in the picture in social media, but do visit my blog because there's a lot more helpful inormation there and this will be increasingly so over the coming months.
23rd May 2024
Coming to the end of the second week of taking the steroid Dexamethasone and the side effects are kicking in. On the positive side I've got my appetite back - and some. I'm clearing a full plate of food at each meal and am even then not feeling full. The downside is that there's often a nagging hunger and in desperation I'm likely to turn to sweet things. I'm eating more digestive biscuits (they are not so high in sugar as other biscuits) and brioche, though I'm usually avoiding cakes and choclate biscuits. Raspberries (4.6% sugar) and planet yoghurt (2% sugar) are probably the best filler, but that gets expensive! Despite the increased appetite I've put on no more that 2lbs (1 Kg) in the last week - but that's good.
The worst aspect is sleeplessness and I'm finding my nights disrupted. At first I'd sleep until about 2 or 3 then gdo downstairs, make a drink, read awhile and sleep soundly on the sofa. Last night I slept only for an hour and a half. I'm not feeling too bad this morning, but it's not good, especially since we're about to go away to a hotel for a week and I won't be able to get up and wander about in the night.
I've decided to stop taking the Dexamethasone for two days to let it disipate from my body somewhat, then start on a half dose (1mg) and see how that goes. I like enjoying my food again and I'm familiar with having disrupted nights (it's an age thing!). But usually I sleep very deeply on the sofa. Not so with the steroids now it seems. Even so, I still feel better in myself than I have for a very long time.
My observation from this experience and others like it is that it is essential to do all we can to support and maintain our immune system. When it is in good working order it is capable of doing so much without any medical intervention . Our main task is to avoid giving it unnecessary things to do through poor maintenance of Mind, Exercise, Diet and Suport regimens. (It's noteworthy that reports indicate that 70% of patient presents at GP surgeries would get better without any treatment at all.) If the immune system is in good condition then any medication we do take will be much more efficacious, reducing the dose needed and side effects suffered. I believe that to be the case with me.
28th May 2024
I stopped taking the steroid Dexamethasone for two days to let the drug dissipate in my body. I was not sleeping well and though I welcomed my new found appetite, I felt hungry a lot of the time. I started back on 1 mg (half the previous dose) four days ago and have noticed a difference. My appetite, though still good, has subsided. I was unable to clear my supper plate yesterday evening. Mind you, they did lade the plate with a grate slab of chicken parmigiana and the broccoli was tough, which didn't help. I did sleep well on Sunday night but not so well last night. This doesn't seem to affect me much and I did sleep for an hour in the afternoon. I'm definitely more energetic and the fatigue comes slowly at the end of the day, rather than after short bursts of activity, such as gardening. Maybe that's more to do with age than the cancer. I'm pleased to be able to regulate my dosage. I see my oncologist in a few weeks time and will discuss any further measures I can take.
I continue to be utterly at peace with my situation but realise how fortunate I am to continue to have no side effects from any of my 'visitors'. I have a growing list of names of people who are suffering and regularly 'hold them in the Light'.
24th May 2024
After two weeks on 2 mg of steroid I found my appetite becoming quite voracious. I was hungry between meals and didn't feel full even after quite a good portion of food. I was beginning to crave sweet things so I decided to reduce the dose to 1 mg and see what effect that has.
31st May 2024
After a week on 1 mg (half a tablet) of steroid my appetite has subsided but I am still eating well. I have put on 1.4 Kg of weight. My energy levels are quite good and today I walked 2 miles. I'm sleeping better than I had been the previous week even though we're away on holiday and in an unfamiliar bed. I'm nevertheless very comfortable at night and have been able to raise my mattress by putting a pillow under it which simulates the position of my orthopaedic bed at home.
Several other good side-effects of taking Dexamethasone have appeared:
(1) I have been taking 15ml Lactulose once a day in the evening (reduced from twice a day). This has been to ease the constipation I had for some months and has been highly successful. This week I missed taking it one day but was not constipated so I haven't started to take it again. Four days later and my bowel movement has remained consistently good.
(2) Having suffered for the last nine months or so with pain across the top of my shoulder every time I walk any distance, by the end of this week's holiday I was suffering no pain at all. That became most notable after my two mile walk. But has this been due to the steroid or my soleeping position in bed? Time will tell.
(3) The intermittent coughing, sneezing and having to blow my nose which has been with me for the last two years has subsided considerably.
(4) For some six or eight months I had suffered from intermittent retching. This would come upon me quite suddenly. I would feel a tingling in my plans, my mouth would fill the saliva, I would feel nauseous and have to dash for the bathroom. On only two or three occasions was I actually sick. Usually I only brought up wind and saliva. That has ceased since being on Dexamethasone.
(5) Over the last few months I've had shooting pains in various parts of my body. Toes, calves, shoulder, my lipoma/sarcoma lump, arm and various other locations. They have been totally unpredictable and of short duration though quite painful. For the last few weeks I've not had any of these pains at all.
3rd June 2024
My appetite is still good but my stamina is very variable.
24th June 2024
My oncologist seemed very pleased with my progress last Wednesday. Having started taking the steroid, Dexamethasone on 10th May, and having reduced my intakeo 1 mg a day a week later t, my system I stable. Here are the benefits so far:
I have my appetite back. I can eat a hearty meal, enjoy it and clear my plate.
I can walk three miles at a reasonably good pace with very little discomfort in my shoulders, and that only towards the end of the walk. And I'm able to do an hour or so's gardening with reasonable comfort and my recovery rate is good.
Sorry to mention this, but it is important for the record. My bowels have settled into a regular routine. No constipation, well formed stools and no difficulty passing them. All this without having to take Lactulose or Dulcaease.
The retching I suffered intermittently has stopped completely.
I no longer have difficulty swallowing tablets.
The intermittent but daily coughing, sneezing and slightly runny nose have subsided considerably. I rarely find myself coughing and sneezing at the same time – which is as near to having my head blown off as can be tolerated!
But there are some negatives from Dexamethasone. I have disrupted nights, sleeping until about one or two A.M., getting up for a pee, then not being able to get back to sleep. In such circumstances and go downstairs, make myself a cup of hot organic oat milk with organic oat cream, two paracetamol and couple of digestive biscuits. Sitting on the sofa I read until I'm sleepy then snuggle down seated and leaning into the arm with a cushion under my head. I sometimes sleep until seven or half past, which is fine. But sometimes I only doze fitfully.
Peeing regularly and urgently is a side effect of eating more. It seems I take in more sugar (of course), this pushes my blood sugar up and causes me to want to pee. I didn't know that. I'll now have to consider how best to manage my sugar levels under the new circumstances.
My oncologist has ordered .5 mg Dexamethasone, two to be taken once a day. I should not have been chopping the pills in half as they don't have a groove in them to indicate it's safe to do that. He's only just getting round to referring me to Birmingham for radiography and sounds cautious about whether they will be able to help. We'll see. Meanwhile I'm very, very fortunate in being able to continue to have a healthy and active life style without debilitating treatments.
1st July 2024
Reducing the dose of Dexamethasone has been successful. My appetite is not as ravenous and I still have good stamina. Twice I was able to walk three miles with comfort, though I would not like to have gone much further. Sleep is still a problem and so is peeing, but my urine is clear and I have no signs of the burning sension of a urinary tract infection, which I've had on numerous occasions before.
'What my Doctors Didn't Tell me About Cancer' is now released in the UK and US and I'm building up to the launch. We called in on the Hereford branch of Waterstones and asked the manager about a possible book launch event there. He was very cautious since the last one he arranged only attracted two people! However, he agreed in principle.
4th July 2024
The book launch at Waterstones has been arranged for 25th July. I've sent out 77 invitations to contacts and distributed notices and flyers to public libraries and noticeboards.
5th July 2024
That afternoon I felt feverish. One minute I'd been shivering violently, the next hot. My temperature was 37.7 degrees. By the end of the afternoon we phoned 111, were advised to call an ambulance and, around 6 p.m. I was taken to A&E with fever and rigours. Around 11pm, I noticed that my urine looked cloudy. I asked for a test which revealed a UTI. I had felt no discomfort in my uretha, which is normal, and the fever had subsided considerably. At 1 A.M. I was given a prescription and discharged.
I stood outside A&E, thankful for my newly acquired smart phone and hoping I might find a taxi at that time of night. Suddenly, the doctor who last attended me (there had been several) appeared and told me they were going to keep me in, which was a relief. However, I was put in a 'holding pen' with 10 or so others where we were allocated upholstered chairs in which to try to sleep. A group next to me had obviously given up all idea of sleep and chatted the night away, which was not helpful. I did eventually snatch some 'doze time' albeit intermittently. After breakfast at 7 A.M. I was taken to a ward and pumped full of penicillin (IV Gent and IV Amox). Three of the five of us were dementia patients, one of whom had occassional bouts moaning and crying out, but that wasn't a serious problem.
By the end of the afternoon I felt much better and Liz took me hope at 5 P.M.
7th July 2024
Daughter Jinny came up to see me. It was such a comfort to receive such loving care. The best medicine we can have.
9th July 2024
Daughter Angie came to see me and to help Liz. We both felt so reassured of the loving support of our family. By this timemy urine was still cloudy and I was coughing a lot. I'd had an intermittent dry tickly cough for several years and this has cleared up almost completely since taking Dexasmethason. Now it had become much more frequent and was feeling unwell.
10th July 2024
I decided to test for Covid. It was positive! Just as I needed to prepare for the launch and the PR time had booked me a load of podcast interviewI deferred most of them but didn't postpone the lauch. By this time quite a few people had responded positively to the invitation, I was feeling all that unwell and I thought I'd test negative before 25th.
I was also peeing a lot - 21 times in one 24 hour period. Worse, the urge to go was sudden and at times was suffering slight incontinence.
20th July 2024
Feeling much better. My appetite continues to be good but my stamina is low. I've been out a few times but avoiding people as I still tested positive this morning. The NHS guidelines seem to say that over 18s who don't have a temperature and are feeling normal can return to work even if they are still testing positive. All fingers crossed for 25th. We have over 30 confirmed attendees.
My peeing frequency has decreased though the urgency is still often quite intense. I have bought incontinence underpants which are comfortable and doing the job. I need to sit down to pee since I'm sometimes apt to spray urine everywhere. I also accassionaly find myself needing to defacate unexpectedly. My bowel function is regualar and, although soft to firm, it is sometimes difficult to gt the stool started. Might this to do with diverticulitis? I have no discomfort. Sometimes I can only manage a small amound. Most of the time is seems normal to soft.
24th July 2024
I tested negative for Covid this morning.
25th July 2024
I felt quite depleted of stamina all day and wondered how the launch would go. Walking from the car park to the shop with a heavy load of books and amplifier was quite exhausing. I didn't feel at all comfortable during the talk and at one point briefly lost it altogether. I told the audience I was having a 'Biden moment', which made them laugh. However, having seen the video, my performance wasn't as bad as I thought and the feedback was most encouraging. I signed a lot of books. One doctor reported that it was an excellent evening and that he had learned a lot. I found that astonishing.
14th August 2024
I saw my oncologist today, All my blood counts are O.K. I mentioned a number of aches and pains (intermittent visual distortions and night cramps). He didn't think they were cancer related, more to do with aging. I'm happy with that. My stamina level is remains low although my appetite is still good. It varies from day to day, but generally I'm not getting the exercise I need even though I'm still eating well.
I bought a collection of sugger-free biscuits which taste fine. I'm a bit concerned about the amount of sweeteners though, and mustn't eat too many. They help me at night when I often have to sleep downstairs (because of night cramps). A couple of biscuits, a small cup of warmed organic Oatley milk with Oatley cream does the job well. I can sleep sitting sideways on the sofa comfortably.
Hoping for an appointment regaarding radiography in Queen Elizabeth Hospital.
23rd August 2024
Another UTI, the fourth one since 28th May!!
31st August 2024
I visited neighbours. He has a sasrcoma which is being treated with immunothereapy every two weeks. At 89, they're very resilient and able to drive to Birmigham every fortnight. I was delighted and encounaged to hear that they are planning a cruisw next year to celebrate their birthdays and 60the wedding anniverary. Now that's positivity for you! They are such an encouagement to
9th September 2024
Attended for CT Scan, both torso and head.
18th September 2024
Stamina and stability are becoming increasingly variable. I can walk a mile comfortably one day and the next stuggle to get two hundred yards to the village shop and back. It's quite unpredictable. The weakness is in my legs. Liz describes them as 'frilly'. I have to concentate on walking a straight line and struggle most when walking up the slope home. Carrying a bag of shopping is an added problem and am considering buying a shopping bag with wheels.
Sleepng has been difficult. I can sleep from about 10:30 pm to 1 or 2 am, then I have to get up, make an oaty/creamy drink, eat a couple of digestive bisuits, take two paracetamol, read for a while then sleep sitting up on my right side, my head on a cushion. I get up once or twice to the loo and often am wide awake by 4 a.m and sometimes I don't sleep much at all. No doubt due to the steroids.
16th September 2024
Got to my deferred opticon appoinmnt. He told me that the zig-zag paterns I get in my eyes intermittently are most likely what he called 'occular migrain'. I looked it up, and that certainly seems to be the case, though apparantly the term aura migrain is preferred.It has become more frequently now but not something to be overly concerned about I think. Maybe it's a good job I no longer drive. The effect lasts afor 15 or 20 minutes and makes reading difficult. However, there is no pain, just inconvenience.
30th September 2024
CT scan today, both torso and head.
Got to my deferred opticion appoinmnt. He told me that the zig-zag paterns I get in my eyes intermittently are most likely what he called 'occular migrain'. I looked it up, and that certainly seems to be the case, though apparantly the term aura migrain is preferred.It has become more frequently now but not something to be overly concerned about I think. Maybe it's a good job I no longer drive. The effect lasts afor 15 or 20 minutes.
4th October 2024
I had a kinesiology session today. We worked on stamina and stabulity and was given some exercises to perform. I did feel a little better and when Liz got home later that evening remarked on how much better I looked. Since 28th September I've been sleeping better and this may also be a contributing factor. She confirmed that there is a malfunction in the adrenal gland.
11th October 2024
Saw GP today regarding a cutaneous mass that has been on muy left forearm for a couple of years. I'd been rubbing Hydromol into ito will little effect. I the last few weeks it became red around the perphery and thought I should have it looked at after my history of carcenoma from last year. The GP removed the scab and declared it clear. I should keep rubbing in Hydromol generously.
18th October
2024
Walking into the village and getting up stairs is
becoming increasingly difficult. My lower limbs feel very weak and
become weaker as I walk. I'm suspecting that this may be an effect
of the malfunctioning of the adrenal gland. I will ask about
increasing the dose of Dexomethesohn when I see my oncologist next
Wednesday.
Meanwhile my appetite is good, my bowels are working well and I am sleeping better. On several occasions I've slept all night in bed. However, I when I do sleep sitting on the sofa I usually sleep more deeply.
23rd
October 2024
A thorough consultation with my oncologist today.
He made copious notes and took an interest in what we'd been doing
with my kinesiologist. My medication is being adjusted. Rather than
increasing Dexamethasone, hydrocortisone is being added. This will
increase cortison and reduce pain, although I'm not having more than
occasional twinges of pain. However, I reported a serious backache
for 10 days or more and my oncologist thought it likely to be
generated by the tumours in the kidney area.
The kinesiology exercies are doing some good and I'm finding it a little easier to get up stairs. If I was doing the exercises more regularly I'm sure I'd be making more progress. I keep forgetting to to do them!
I sleep propped up in bed from 10:30/11:00 to around 02:00 or 03:00 and on a couple of ocassions beyond five. Usually I'm downstairs by 02:30 ish, make a drink of warm organic oatmilk with oat cream, nibble two sugar-free digest biscuits and take two paracetamol. I usually read for 45 mins or so and sleep semi-sitting, feet on the floor, covered in a blanket and with my head on a cushion on the arm of the sofa. Very comfortable and I usually sleep sundly until around 5 or 6 am - ocassionaly until gone 07:30!
Appetite still good. Bowels functionng well. Weight hovering around 12 stones (76.4 Kg, 168 lbs). BP 1129/66 pulse 69, which pleased my oncologist. However, some trousers which I had taken in are now too tight around the waist. I have enough to keep going so won't need to make any wardrobe changes yet.
2nd November
2024
I've continued to be completely free of backpain since
the morning of 28th October. I'm beginning to conclude that this was
a simple muscle strain. My stability is quite a lot better although
my stamina is only improving slightly. I'm walking without a walking
stick to support me and am feeling much more stable. Yeleni are
kindly offering me eight more free therapy sessions and I'm booking
them fornightly over the next four months.
At the gross,
physical level, I feel quite differently than I do at the subtle,
inward level. On the one hand my body feels reasonably normal when
stitting but stiff and awkward when moving. Inwardly I feel normal.
It's as if there are two of me here. I expect physical normality,
but that's not what I get when I make any effort - far from it.
However, I'm not frustrated by it and I guess this is my new new
normal.
3rd
November 2024
After
trying to unsuccessfully put the lens of my glasses back to my frame,
I had an extreme pain in the forefinger and thumb of my left hand.
This has happened on numerous occasons over the last few months but
never as intensively as this. The pain came and went several times
after lunch but eventually ceased and hasn't returned. I need to
discover the cause. Is this a manifestation of neuropathy?
Hearing is a problem. We had friends to lunch and they are both quietly spoken. For a lot of our time together I found it almost impossible to hear or underestand what they were saying. In watching TV I often find that I can't keep up with the subtitles and sometimes neither the audio or subtitles make and sense to me. I'm not frustrrated by this - bored perhaps - but not in anyway annoyed. I hear a lot of elderly people complaining about how difficult old age is and how disappointed they are at not being able to do what they used to. I'm reminded of the words of a Tibetan Lama who said that if we have a problem we can do something about, why whorry about it? And if we have a problem we can't do anything about, why worry about it? We just have to accept life and forgive life and do the best we can.
4th November
2024
Glasses sorted and I was able to read the second line of
the test card, which pleased the optician's assistant no end. I also
visited a hearing charity and found I may get some free technical
help using a personal hearing loop.
The pain in my hand hasn't returned. However, it seems a UTI has - the fifth since late May. Will provide a sample in the morning, Could this to be to do with the tumours in the pancreas?
7th November
2024
I has a call from a Macmilan renal cancer nurse from the hospital in
reponse to my email to the oncology department. I'll have a regular
contact who can direct me to clinical needs between my usual check
ups. This will start with a holistic assessment.
Liz and I had a
good indepth conversation on our situation which we will continue
with the support of our renal cancer support nurse. This is exactly
what I was hoping for.
(P.S. The letter was headed 'urology' but I misheard 'neurology', expecting a conversation about parietal tumour. When I got the paperwork it revealed that it was from the urology team, which I discovered was because of the ongoing renal cancer, not to do with the upcoming appointment with the urology department in respect of my urinary issues. Could have been clearer.)
8th November
2024
I'm now half way through the course of antibiotics.
Monday and Tuesday I felt and looked quite unwell, probably due to
ack of sleep. I slept in bed for the whole night, waking to pee
every hour. But my urine is now clear, I have no stinging and I'm
back to my usual spleeping pattern. Feeling much more alert and
together this morning. I've bought D-Mannose, Cranberry and Vitamin
C capsules to be taken three times a day. I read the leaflets on my
medication and no contraindications with that concoction.
No
recurrence of the pain in my left forefinger and thumb.
11th November 2024
I've completed the course of antibiotics and my uring is clear. That day I took a strollThat day I took a stroll around the village and felt good going out in the sunshine. But by the time I got to the bottom of the village, only a few hundred yards away from home, I began to tire and felt myself becoming emotionally disturbed. I had a tendency to weep, largely because I think I realised I would never be able to stride out into the countryside again. It was difficult to get home and by the time I arrived there I just collapsed in floods of tears being comforted by Liz. I recovered later that day.
13th November 2024
I attended a kenisiology session today. We worked on my jaw area for speech and chakra 3 area for body alignment. I have to work harder to keep the exercises going regularly. I get involved at forget to do them and sometimes my supplements.
No re-occurrence of my tearfulness and have quickly come to terms with my limitations. I am now considering buying a mobility scooter so that I can get out of the village even if I can't walk far. I just need the freedom and being out in the sunshine and fresh air is most uplifting.
14th November 2024
I cored, peeled, sliced and stewed some apples from my neighbours orchard. Later I had a recurrence of the painful area between my left forefinger and thumb. It was quite painful for a while but subsided. Of more concern to me was that I played the guitar later that day and found that after a short time of playing chords the pain in my left forefinger and thumb returned though not for long. Is this another aspect of my life that I will no longer be able to pursue? In old age it is so necessary to have learned learned to accept, not to resist the inevitable, especially not to "Rage rage against the dark" - Dylan Thomas's great misunderstanding of his father. An untimely death leaves so many questions unanswered and so much loss it makes a life incomplete. A timely death, however, is appropriate and a blessing.
15 November 2024
We had a busy day shopping in Leominster, buying toys for children in Ukraine followed by lunch, some more shopping trip to the garage for new tyres then walk out to the hospital and back. It was a lot and by the time we had walked back to the garage I was feeling very tired. When I came to try to talk to Liz I found that I was not able to make myself intelligible neither was I able to make myself coherent to her. This continued when I went into the garage to pay and Liz had to interpret for me. I was able to pay with my card but continued to be unable to speak properly or to clearly understand what was being said to me. When we got home it's got me a cup of tea and some biscuits, can be worn with a blanket after which I fell asleep. In the next hour or so I became coherent although during the evening I was finding it difficult to follow the film we were watching and there was a complicated part where I needed to ask Liz what was happening.
At 9:30 PM I realise my pulse was racing and tested by blood pressure. 191/87 pulse 98! Average of three: 178/86 Pulse 98. At least the BP was coming down.
Although I went to bed t late that night I did sleep well, not needing to get up to the do until 4:15 AM. I then lay a bed for an hour before getting up.
The next morning I tested blood pressure again at 5:15 a.m. 178/86 pulse 97. Better BP but pulse too high. I've been used to around 128/70 with pulse 68 since early 2022. Not alarmed. It's just about with the top parameters, but will monitor for a few days.
20th November 2024
My blood pressure was back to normal on the 17th and remain consistent. I had a hospital appointment on that day so caught the bus in the town and walked across to the hospital to discover that I got the wrong date should have been there a week later. I had the best part of an hour to walk back into town and do a little shopping. I managed this without rest, walked back to catch the bus and ride home feeling good.
5th December 2024
Over the last five or six weeks my stamina and stability (SSS) have been deteriorating, somewhat noticeably. I'm finding it increasingly difficult to walk upstairs although I can do this slowly without needing to take them one at a time. However I do have to breathe heavily as I do this, especially on the last four steps. Until about a week ago I could descend the stairs quite easily but now I'm having to take them more slowly. I'm very conscious of every movement of my legs. Fortunately they don't hurt. It's just that I have to concentrate on walking and I constantly have to readjust my movements. Getting up and down steps in the shops and onto buses is also moderately difficult. I will certainly need to obtain a mobility scooter although I still want to walk as much as I can for as long as I can, and I have no idea of the prognosis. I have written to my oncologist suggesting that I may need more help than my three monthly visits although this may be with other members of the team. A copy of that email will be sent to my contact in the holistic cancer support team. We will make an appointment with Macmillan Cancer Support for advice on this new phase of my condition. The time is coming when we may need to explore possible hospice care but hopefully that's some way off. We are experiencing much love and happiness together although I know that for Elizabeth there's a lot going on under the surface. We have a lot to think about and a lot to plan.
My speech sometimes gets a bit jumbled, with interesting results, especially from my dictation software. I don't know whether this is simply a matter of old age or part of the neuropathy. I also find myself writing completely the wrong word and often I find I have missed out the last letter of the word. This does seem odd. But at least on editing what I've written I am able to detect the problem and making corrections.
When sitting down I feel absolutely normal. But then when I struggled to my feet, regained my balance and begin walking everything feels awkward and I quickly lose energy. When moving I feel slightly dizzy and I have to be careful when cchanging direction as I'm in danger of losing my balance. Morning seems best. In the afternoon my energy levels become depleted quickly, stability declines and my recovery rate slows down. The strange thing is that although the physical me feels limp and depleted inwardly I feel strong and energetic.
I am not in pain and not anxious about my condition, which is another strange experience. This is not indifference, I'm doing what I can to help and do what jobs I can to keep active. When I get up in the morning, I look in the mirror and smile. I often experience joy for no particular reason. I love being with people, perhaps far more than I used to. I find it easier to talk about things I used think of as mundane thing - I think I've been far too serious a person for most of my life. The character of my journal entries has changed over the last months, and I'm finding my way into a greater degree of simplicity.
6th December 2024
After three days measuring liquid input and output every hour each 24 hours, I attended a Urology assessment. My rather enlarged prostate is restricting my urine flow to 100 to 200 mls at a time. The normal curvature of disribution should show as bell shaped. Mine shows a curverture skewed to the right side, the lower side of the graph - like a floppy blob of blanchmange! The stream is also weak. The nurse suggested an operation and I said that in my condition and at my age that would probably be a waste of NHS money. I am to be given medication to aleviate the feeling I need to go so frequently and will see the consultant in January.
10th December 2024
I began to feel the itch of yet another UTI - the 8th since 28th May,
11th December 2024
A lady from Deaf Action Hereford visited me at home, did an assessment and provided me with a free connection to my hearing aim loop to enhance my hearing in groups and on TV etc. Wonderful help. I now heae more than every other word!
Took a sample of urine to our village pharmacy and got results and antibiotics next day,
14th December 2024
My strength, stamina and stability (SSS) are still low but variable. I've not yet had a reply from my oncologist - no doubt a busy time of year. My cancer support worker is following that up. I'm better in the mornings. [I checked for oncologist's reply for the date I sent it and discovered I hadn't sent it at all. Is this a memory issue arising from old age or the neuropathy? Too late now. I've received an appointment in September.]
On Friday I walked down to the dispensery to collect some medicine and intended to go into the village shopping but on the way I realised I wouldn't make it. I met a neighbour who kindly posted the letters I had with me and went home, having stopped briefly three times in those 150 yards for a rest.
On saturday Liz drove to our bistro, had coffee with friend then drove to our extensive farm shop. So far so good. We borrowed a wheel chair to get me around but it was heavy and awkward. My prosthetic shoulder isn't strong enough to push the left wheel by hand and there was no way of attaching a basket so I got out and pushed the chair around, sitting down in it while Liz shopped. At one point she lost me. I'd found place to wait out of people's way and she had to ask they's seen a man in a wheelchair! 😟 By the time we got home I felt quite exhausted. After a light supper I slept for an hour but still my SSS was low so dear Liz cooked despite needing to get on with the Christmas cards.
15th December 2024
We walked to a friends house for drinks an nibble. Lovely company and plenty of chairs to sit in. Hearing is difficult but was able to managed most of it. Questions were raised about getting the band back together but I'm doubtful the intermittent pain my hands will allow prologed guitar playing. I might see how I get on with the harmonica, if I have enough puff. 😯
Got home at 2.30 pm and had a sleep, then turned my left-over vegetable stew into a curry with naam bread. Slept well from 11 pm to 3 am then got up, made an oat drink, had two biscuits (one digestive, one sugar free), took two paracetamol and read until 4 a.m. By five I knew I wouldn't sleep again (steroids?) so made tea and brought my diary up todate.
When people ask how I feel I say, "Contented." It's truly how I am. I don't want to launch into all the things I've got wrong. That's for the blog and if I do that there's a danger of our degenerating into negativity. I've so much to be grateful for. I'm not in pain and I continue to have no anxiety about my condition.
16th December 2024
Took the bus to Hereford this morning to visit my kinesiologist. Rather sluggish walking this morning and had more difficulty climbing stairs than last time. We experimented in this session. I told Jenny about my Tom Cheetham reading that morning. It was about sound and resonance. Jenny said that in thinking about the session before I arrived she's been considering using the tuning forks. We do have a good report. I suggested it might be more difficult to work on biological issues directly rather than at the subtle and what I call the ethereal level. She agreed. So have a check and alighment we addessed two issues, one of which touched on relationships, which highlighted to me that there might be stll something going on to do with my mother and lack of closeness.
I then walked into the shops but quickly discovered my SSS depleting so caught the bus home. I did manage to do some shopping in the village shop but was very tired by the time I got there.
19th December 2024
I cleaned the car windows this morning and found it realy hard work. Liz took me to Hereford shopping arriving after 12 p.m. and I bought a mobility trolley for stability and carrying. The assistant offered one for around £350. I enquied about one next to it with a seat over a box. "£115," he said. Just the job, and I got VAT off! I also bought a device for putting socks on but they took some time to get them to work. Ultimately "I did it my way", ignoring most of the instructions.
On the way back to the car I lost my ability to speak coherently. This had not happened since the first occurrance, two months before, on 15th November at Leominster. At that time I'd put it down to having forgotten my Bisioprolol but this was clearly not the case. I was in no discomfort nor was I confused. Everything worked except my mouth! We had lunch then Liz went shopping while I sat with a copy of a newspaper. After about an hour I was getting desparent for a loo. When I got back from the other end of the shop there chair that I'd been in was occupied so I sat near one by so, as I thought, I could be seen. During nother 20 minutes or so I'd phoned three times but Liz's phone was off! Eventually an assistant found me and took me to Liz who was sick with worry!
The trolley has proved to be very helpful - much better than the walking stick.
I was gradually recovering my powers of speech by then and was able to shop alone for a few more things while Liz rested in the car. We were both unusually tired and needed the next day to recover.
At home I started my 9th UTI since 28th June, only two days after being clear of completing the last cycle. I took a sample the next morning (the Friday before to Christmas). When the test came back the pharmacist said it could be safely left without antibiotivs. I'd not been ill, had little stinging and my urine, though cloudy and has a sour smell it was not totally opaque. I was peeing small amounts every hour but had no incidence of incontinence so I wore ordinary underpants at night with no problems. I had started taking a supplement of D-mannose, vitamin C and cranbury.
21st December 2024
I delivered four letters to near neighbours using my trolley and realised how rough the pavement and road surfaces are. Maybe it would have been easier to walk without my trolley! Within about 150 yards I stopped at a friend's house for a welcome 15 minute's rest. Had a chat with an aquaintance when it started raining, so took shelter until it stopped, then headed home. Less than 300 yards and I was breathing fairly heavily and in need of a sit down. Within the last year I had been able to walk three miles sometimes.
It is now uncomfortable, though not painful, to move upright at every step. Sitting is fine, standing still is too, at least for 10 minutes or so. I describe the effort of walking as the amount of energy used to ride up a slight incline on my bike. Not a problem when the road takes a turn between the ups and downs, but now its up hill all the way. As I used to quip while living in Gloucestershire, some of the hills don't come down again, a comment corroberated by two village signs: Paradise and The Heavens! My rides up the Wye and up the Severn gave me good practise at that, as did cycling for over 20 years exploring the Cotswolds. Happy days, now a legacy of fitness that will keep me going a while yet.
22nd December 2024
06:15, I awoke with what I thought was indigestion. After half an hour I realised my pulse was fast and irregular. The top reading was 195/91, pulse 95 but the readings were generating errors! I woke Liz at about 8 a.m. and called 111.
Readings 06:45
195/91 pulse 95
190/88 pulse 97
183/87 pulse 95
______________
Avg:
189/89 pulse 96 With two errors. Temperature: 36.4C
______________
An ambulance came before nine attended by an absolutely superb crew. They confirmed very irregular heart beat, at one stage from 90 to 60 in two beats! At A&E, and still in my pyjamas and dressing gown, I was taken straight to a cubicle by a nursing station where staff took readings staight away. Eventually I was told I'd see a doctor. My dear middle daughter travelled up from Cirencester to support Liz and they arrived at about midday, by which time I'd been moved to a corridor. It was gone 4 pm by the time a doctor came telling me that she'd been monitoring me remotely all the time, which was gratifying. I was feeling better and the Bisoprolol, which I'd not taken until later in the morning, had brought my readings more near to nornmal. The doctor decided no further intervention was necessary and to continue with Bisoprolol and no antibiotics. Urine still cloudy and regular but not stinging much.
We had a long delay getting home because Jinny needed to charge her car and finding a fast charger wasn't easy. I should have had a pee before I leff the hospital. Half way home, in the wilds of Herefordshire, I realsed I could contain myself no longer. Fortunately my incontinence pants survived a full strean without leakage. I was fearful of wetting the posh car seat, but all was dry.
23rd December 2024
I had a normal day. Then at around 9 p.m. the arrythmia began again. My pulse was fast though not as irregular as it had been the previous day. I phoned 111 with a later follow up call and was referred to a local to a local an out-of-hours. I monitored my readings to 11 pm:
143/83 pulse 77
145/81 pulse 75
142/82 pulse 74
_____________
Avg:
143/82 pulse 75
_____________
Those readings looked consistent to me though a little higher than my own long range average. At midnight I recalled 111 and cancelled the call. They double checked having told them my readings and they seemed OK with that. I had a relatively good night
24th December 2024
06:35
147/79 pulse 74
135/77 pulse 71
132/73 pulse 64
_____________
Avg:
138/76 pulse 70
Feeling OK. Travelled to Cirencester for Christmas until 27th December. We had a special Danish Christmas Eve meal with a lot of fish and rye bread. A lovely time with family and slept well in my portable bed that I brought with me.
25th December 2025
After a brunch I began to sense my heart become unstable. With the help of my daughter we rang 111 and were sent to A&E at Swindon. The checks were done quickly and efficiently and we were told it would be a two hour wait for a doctor. Not bad for most A&Es. Very good for Christmas we thoght. An exceptional youg lady doctor was exceptionally thoughough and we got home at around 6.30 pm.
_________________________________________________________________________
Here are the main points from your hospital visit on Christmas Day taken down for me by my daughter:
- You had two ECG’s the first showed that you were in A-Fib the second was normal.
- You also had two blood tests. The first one suggested there had been very slight damage to the heart from the A-Fib. The second one showed no damage.
- The Dr spoke with a senior consultant to check what procedures and medication would be appropriate.
- You had an x-ray of your lungs to check for fluid because of the swelling in your ankles and to make sure that any medication to reduce the fluid would not have adverse effects on your heart. Your lungs were clear of fluid.
- The Dr prescribed blood thinners to ease the A-Fib ((Apoxiban 5mg x 2. She suggested taking them for two weeks and to contact your GP in the meantime to ask to be referred to an Arrhythmia Clinic to reset your heartbeat, which would then be maintained with the help of the blood thinners.
- The Dr also prescribed medication Fursemide (40 mg) to reduce the swelling in your ankles.
- The Dr recommended doing as you did, resting, sitting still if your heart rate and blood pressure increases.
_____________________________________________________________________
26th December 2024
At 1 p.m. we departed for my son & daughter's home for lunch with all his family. Liz stayed home. It had been a heavy Christmas Day for her both emotionally and physically, and the previous days had taken their toll too. She clearly needed the rest.
We were glad of a quiet afternoon with family including our two delightful great-grandchildren. I slept well.
30th December 2024
I took a second Furosemide (40 mg) and was soon peeing ever five minutes. This was accompanied by small loose bowel deposits almost every time I peed,
My youngest daughter, husband and son arrived for lunch. She drove me to our GP practice to see a doctor who was new to me. By then the over-regular peeing and defication had declined. The doctor agreed I should stop taking Furosomide but doubled the dose of Bisoprolol ( 2 x 2.5 mg per day).
We had a joyful family day leaving us envitalised rather than depleted, which is often the case with some visitors.
The side-effects had worn off by the afternoon and my whole system seemed to have normalised: heart and urinery tract.
31st December 2024
Felt much more normal this morning. BP: 129/63 pulse 71 (average of three). Walked into the village for shopping using my trolley with no problems. Visited neighbours for drinks (mine non-alc) at 6pm. Then home for quiet evening and early night. The bulimic excess of the city fireworks displays is not for us.
5th January 2025
I was a freezing cold dau and I found a way to lay and light the log fire by sitting on an upright chair. It's not a job I'd do without Liz being on hand. In fact there are a growing number of tasks which could be potentialy hazardous
in case I should fall. Liz cooked a delicious meal and we had a restful day in front of a blazing fire. (One day I'll leave a passage I've written unedited so you can see the kind of gobbledegoop I'm capable of.🤣)
6th January 2025
I had an ECG today. Everything is satisfactory.. Blood tests taken. No further AF incidents. My urine has been clear intermittently
for some days. Yesterday and today it seems clear though dark. Do
I need more fluid? I'll leave it to the end of the week before
getting it tested again. Feeling generally more vital.
I have more vitality in the morings than the afternoons and yesterday there was a definite decline in stability, strength and stamina on walking home from the surgery.
I'm having difficulty putting on my socks. The 'Soxon' tool is a struggle. It's too tight. I also take stairs one at a time, Even then then my legs ache and feel week on the last five. Coming down is OK, though slower than usually and I dare not let go of the bannister rail.
7th January 2025
We've begun to put the 32 page Attendance Allowance application together. My hand writing and ability to produce consistently intelligable words needs careful editing. A speller is essential.
8th January 2025
Woke at 3 am, went down to the sofa, had an oaty drink and two sugar-free buiscuits, read for an hour and slept until 6 am. A fairly routine these days. Breakfast around 7 and felt tired - very tired. I slept on an off all day, feeling very limp every time I moved. I felt a bit mre lively in the afternoon, went to bed at my usual 10:30 or so and slept as normal (for me) that night.
9th January 2025
Felt well this morning. Walked into the village using my trolly and had lunch with friends at the cafe for two hours. 3:15 pm at home I felt an A.Fib. coming on.
15:45 Palpitations, noticeable heart beating, tightness in chest above breast bone, breathing more heavily than normal, burbing. (Within normal bounds according to NHS website but for 3 hours at a time??).
148/91 pulse 95
148/86 pulse 86
124/87 pulse 100
_______________
140/92 pulse 94
A.Fib began to subside at about 6 pm. 19:15 pm
135/84 pulse 82
132/65 pulse 77
134/68 pulse 77
________________
134/72 pulse 79
(Within normal bounds according to NHS website but for 3 hours at a time??).
Slept well.
13th January 2025
I took a urine sample
to our surgery this morning and got a UTI test done immediately. The
nurse was concerned and booked an appointment that afternoon.
Brilliant. The GP suggested that the UTI may have to do with a spasm in the bladder,
common in people my age (so many things are!). It needs further investigation. Later that day the reception phoned to say that a
telephone appointment had been arranged for me the next day.
My life does seem to be filling up with medical appointments and my mind has little space to contemplate much else. This is noticeable as I make fewer entries in my journal. I'm also finding it difficulty to fit in important jobs like publishing. I get very tired.
14th January 2025
Helped direct our gardener/handyman to sort out our disaster of a garage. After lunch Liz took me to the audiologist where successful adjustments were made. Liz did some shopping on the way home slept while I slept. By the end of the evening I was shattered. In my condition it's surprising how little little is!
15th January 2025
In the telephone interview
the GP asked me to obtain a blood sample for anaemia. I looked up
the NHS site and discovered I appear to have seven out of ten
symptoms. Feeling
decidedly fatigued today but I'm doing what I can do to keep keep active.
17th January 2025
Phoned the surgery at
midday. The report showed blood test satisfactory. However my
excellent GP tried to phone me three times, lucky on the third, to
tell me the test was not OK. I have an ecoli infection and although I
have slight anaemia, but nothing to worry about. Might an iron supplement help? The GP checked with
the pharmacists and I was prescribed an antibiotic.
19th
January 2025
Today my urine
is clear. However the Solifenicine has no apparant effect yet. I still pee
small amounts frequently.
20th January 2025
Set my alarm for 7 a.m. and rather wish I hadn't. I lay for a while to gaim stability but that didn't help. Stability is difficult is difficult first thing in the morning but often I need a pee - rather urgently - and in danger of a leak! My eyesight was very
fuzzy and remained so at 10 a.m. I had to pause on the stairs.
Feeling decidedly limp. Great difficulty getting my socks on! By lunchtime I hegan to feel better.
22nd January 2025
Liz accompanied me to
my rescheduled appointment with my oncologist. After a two hour wait
I encouraged her to go to her village meeting and for me to take a taxi home.
(£37! but worth it). It was another hour before I saw my oncologist. There had been a
catastrophe with a patient and instead of rescheduling, though it
seemed a sensible thing to do as a three hour backlog was impossible, doctors were
still trying to see patients. As a result the consultation was
rushed. I was told that I was being referred to the hospice as their
appeared to be nothing more to be done. It wasn't a surprise but I
did expect to be told in a more gentle and empathic way.
As I left the
consultation room the full impact of the news hit me. I went to the
Macmillan unit and asked to use the quiet room. An member of the Macmillan staff
accompanied me as I didn't want to be alone. I explained what
happened and was soon in tears. I don't know how long I was there but
it was extremely helpful. We were able to share a lot. My Macmillan companion found it helpful
too.
The next day I was shattered and we cancelled our trip to
Worcester. I was especially wobbly when I first got up and fell back
onto the sofa three times before I was able to gain a modicum of
stability. Slept most of the morning but ate a good lunch and felt
better by the evening.
24th
January 2025
Today I phoned
our children – the first time I've ever got through to all but one
in one go. They were upbeat and supportive, as I expected. They will pass on the information to the grandchildren (all over 20 now).
25th
January 2025
Having had time to reflect on that awful
consultation I emailed the family to say that I didn't sense the
situation was immanent. I think the oncologist maybe had had misjudged – has
always misjudged – how well I am. O.K. I know my illness is
terminal but has been for 10 years, but I have an inner vitality and
am not in pain, only minor discomfort, and no serious anxiety about
my deteriorating condition.
We will continue to prepare for what needs to be put in place so that we can make as smooth a transition to what will be. Writing, especially typing, is difficult. It's about dexterity. A lot of editing is needed and I still get letters and words wrong,
My urine looks clear.
27th
January 2025
Saw a GP about
swollen ankles. On 6th
Jan the doctor took me off Furosemide because of side effects
(diarrhoea) and doubled my dose of Bisoprolol. Although the
increased Bisoprolol stopped the atrial fibrillations he left the ankles
untreated! A different GP put me back on Furosemide until Friday to
try to drain off the fluid – side effects or not.
I took a posti-antiobitic urine sample sample to surgery.
28th
January 2025
This morning my
urine looked a little cloudy. By the afternoon I was peeing more
than usual as should be the case with Furosemide but no sign of
diarrhoea. I haven't had the test results yet.
This morning I received a pdf of the letter from my oncologist to the hospice – most reassuring. It's much more what I thought the situation was but needs updating. However, soe of informaion was wron. I was only on Pazopanib for four weeks before my oncologist withdrew withdrew me from it because it was endagering liy liver. I then had three weeks on half a dose when the after effects kicked in again and I withdrew from that treatment. I had been offered chemo in June 2015 but declined it. I had expected to have a few good years but not 10! The details of that part of my journey are to be found in chapter two of 'What my Doctors Didn't Tell me About Cancer'.
The letter mentioned aphasia as being intermitent but not neuropathy which is consistent! I shall hope to get a properly reserched assessment which may give some idea of possible prognoses. To date, apart from scans and radiographer's reports, I've only had hypotheses as to what the causal implications are.
30th
January 2025
The UTA
returned! I booked an emergency appointment with a senior GP intent
on getting a consultation with a specialist. He suggested that,
although he could write a request he couldn't force a satisfactory
response. Instead he recommended putting me on a week-long course
of antibiotics followed by three month's of low-dose, slow release
antibiotics. That seemed quicker and more immediate to me. He's
also doubled the dose of Furosemide to be taken in the mornig. I
observed that my pee volume was still low though the urgency has
calmed. If all this doesn't work we may have to resort to a
catheter, and that would be OK. At least I wouldn't need to get up
at night.
Felt more chipper this morning. Maybe the Furosemide is working. I have a check up on the swollen ankles tomorrow. An appointment has been made for an echocardiogram on 7th Feb.
We had a telephone call from the garage in Worcester (25 miles away). We've had to postpone the appointment twice, the second time as I was unwell. They are going to collect and deliver the car free of charge! What a relief and what kindness!
31st January 2025
Another GP appointment to check the swollen ankles. I'm to weigh myself naked every morning and record my weight for a week. Also to keep up the double dose of Furosemide.
3rd
February 2025
So far no
weight change – 81 kg. However I'm finding it easier to get my
right slipper and shoe on. I'm also sleeping beyond five without
having to finish the night on the sofa. My 'poddling' seems to be
more stable though my writing is inconsistent. It needs a varying
amount of editing and sometimes write 'gobbledygook'. Thank goodness
for spellers!
10th February 2025
On Friday I had an
Echocardiogram at the hospital. I felt so relaxed while the
technician took the readings I nearly dozed off. After the tests she
took my blood pressure and remarked, “Wow!” Surprising coming
from somewhat reticent person. My BP was 111/56!
Daughter and grandson cleared out the eves cupboards over the week end while I supervised. Although I was seated, it was hard work for me and I needed to rest, although I wasn't exhausted.
The results were given to my GP the following Monday and showed my heart to be in pretty good condition. Although my daily weight measurements showed little variance (790 Kg to 801 Kg), swelling in my legs, especially my right leg, had significantly reduced and I was finding it easier to put on my socks and shoes. (The new diabetic socks - looser and softer - are briliant - I've been putting them on unassisted. I am walking more easily and am more stable in my movement - at least in the morning. I do slow down notcingeably in the afternoons.
My GP has reduced Fuerocimide to one tablit and booked another appointment for 28th Feb. It's really good to maintain consistency with my GP. I asked about the possibility of setting up regular biometrics, such as for strength, stability and stamina. She thought it a good idea but didn't know of any such services. She suggested talking to the palliative care team member team whom I see on Friday. Perhaps my kinesiologist would help. I'll ask.
12th February 2025
We had a home visit from a nurse who is a member of the Specialist Palliative Care Team. The team consists of nurses, doctors and other healthcare professionals with expertise and training in palliative care. They can offer help when palliative care needs are complex such as:
Assessment and ongoing review of your symptoms
The opportunity to talk through distressing feelings
Help with planning how you would like to be cared for as your condition progresses and at the end of your life.
Support and advice for the people who are important to you.
Information, support and advice to the healthcare professionals supporting you.
The hour and half session was very thorough and easy to understand. We both felt we understood at least the most important aspects of the support which is to be provided. So now we have a good team: our excellent GP, oncology services, such as scans et cetera, provided by the hospital (Macmillan Renton Unit), specialist palliative care team member and our urology cancer contact.
At this time most of my
needs are likely to be met by my GP but there are a number of things
that the palliative care team will be providing. Notably an
assessment of my current physical condition through scans and perhaps
physiotherapy, which I have suggested cover strength, stamina and
stability. I am hoping that a report following this meeting will be
made available to me.
***
Sleep is variable. Last night I woke up at about 1.30 a.m. and tried to stay lying on my back. This did seem to prevent the pain in my right ankle but it didn't help me get to sleep. I got up, made a hot drink containing a little whiskey, settle on the sofa and read a little. Slept about four, went to the loo and went back to sleep until 8.30, when Liz woke me up. My ankles, though still somewhat swollen are not as soon as they were. It's easier to get my socks on, especially with the new soft and stretchy sorts. And easier to get my slippers and shoes on.
I do have to keep searching for words and failing to find them. Is this old aphasia or simple old age – difficult to tell. I now write down words and phrases that I regularly have to search for so that I can look them up in my journal. Strange that I know what I'm looking for in terms of meaning but cannot articulate the words themselves.
In recent weeks I've found myself having to take the stairs one at a time. I can take three stairs and then have a short rest but the last four or so are hard work. This is especially so last thing at time and even carrying water bottles increases my difficulty. My left leg is definitely weaker than my right and slimmer too, although it may be that the right leg is a bit a bit more swollen than the left.
I feel contented in myself. I feel no serious pain, only slight and intermittent discomfort and have no anxiety about what is going on in my body, which remains stable as far as I can tell.
21st February
2025
An online session with
my kinesiologist revealed that medulla function is running at 70% and
adrenal at 60%. The latter is known since I only one adrenal gland.
I should check this wit my GP.
I
now have a whole suite of exercises being sent me. Here
are some notes on the medulla oblongata:
Your medulla
oblongata (med-oo-la ob-long-ah-ta), often just called the medulla,
is a key part of your nervous system. It’s key not only because of
its location but also because of what it controls. Some of its jobs
include:
Manages heart, circulation and breathing. Your medulla is where your cardiovascular and respiratory systems link together into a united system that controls your heart rate, breathing, blood pressure and more.
Manages other automatic processes. These are things that your body often does without you having to think about them. Some examples include coughing, sneezing, swallowing, vomiting and maintaining your balance.
Nerve connections. The vast majority of major nerves converge at your spine, carrying signals to and from your brain. That means those signals must pass through your medulla. Four of your 12 cranial nerves (which connect areas of your throat and tongue directly to your brain) pass through your medulla.
Crossover point. your medulla is the location of a region called “the pyramids,” where most of the movement-related nerves in your body crisscross. That crossover is why one side of your brain almost always controls parts on the opposite side of your body.
22nd February 2025
I
had a long consultation with my Yeleni Kinesiologist on Saturday.
We identified various items for attention. Here is the main content
of my email:
What's resonating in me from our session are the word Medulla and Adrenal. You also referred to Parietal Lobe and GV8. I made notes on 10 exercises but I'm not drawn to that number of I items, nor has my befuddled old brain able to understand all of my notes - sorry. The heart, as an organ, seems to be in good shape according tests at both Swindon and Hereford. However my GP has put me on Apixaban ( anticoagulant) and Ramipril (for high blood pressure). I've no history of high BP other than the four A-Fibs and I've not had any more since early Jan and the doubling the dose of Bisoprolol. I don't think I need either of these and will talk to my GP about these. I'm not asking your opinion because I know it's part of your remit. Neither will it be my GPs decision - she'll need to play safe. I suspect those pharmaceuticals need to be out of the way as they could hinder the energy.
I seem to be at a reasonably stable state bodilly (gross level) although with noceable variations day-to-day. At the inner (subtle level) I can return to that level fairly easily most of the time.
23rd
February 2025
I've started
sleeping all night on th sofa instead of sleeping in bed until I wake
at around one or two and then doing my
drink/biscuits/paracetamol/read routine. But having been sitting all
evening in the same position, then sleeping in the same position all
night, is not proving to be conducive to sleep. I've tried sleeping
with my legs on a footstool so I can change position doesn't help
much. I'll try using my recliner in the evening and the sofa at
night.
***
I took a sunny walk to the village this afternoon which should have been a delight but was a bit of a struggle. Stamina is low. Walking is weak and I needed to sit on a seat in the rose garden before going home. Any movement other than sitting is moderately uncomfortable. Simple jobs like washing up makes my shoulders ache a little as they did when I was recuperating from my shoulder operation. In early January I was able to get up stairs normally but by early February I had to mount three stairs then take one before taking a third. Now I take stairs one at a time and the last three or four need more effort. I can descend stairs normally albeit more slowly than before. On first getting out of bed I find it difficult to maintain stability, but I haven't fallen over yet.
***
Today we received approval of Attendance Allowance at the higher rate. That will provide support for Liz around the house. We're going to consider an air cooker to make cooking and washing up easier.
7th March
2025
What a fuzzy and
muffled world we seniors would be living without the accoutrements
that line our bedside lockers. Then there's the collection of
tablets, capsules and unguents which have to be taken or applied at
different times and in different quantities throughout the day. The
there's the collection of prosthetics: glasses, hearing aids, perhaps
teeth! Today we both had our eyes tested. Good news! My prescription
has changed so little it wasn't worth making a minor change.
However, my cataract has been developing for some years but, like all
my other ailments the rate of deterioration has been slow. It's not
at the stage of increase that is operable. Liz had her cataract
operation several years ago and it's been very successful. Now she
has special glasses for driving. As I can't drive it's important for
her to stay mobile as long as safely as possible and for as long as
possible. Confidence is now a big issue for her, especially in
traffic, narrow roads, parking and reversing.
10th
March 2025
I've changed my
sleeping arrangements though not my timings. I still go to bed at
about 10:30 p.m. I used to sleep in a reclining position on my
adjustable bed but within an hour or so I needed to reduce the level
of incline at which point I would sleep on my right side. (My
prosthetic shoulder prevents me from lying on left.) This has at
times induced cramp in my ankles, or often I just can't get back to
sleep. When I slept less reclined and on my side I got a pain in my
right ankle which was only relieved by getting up. I'm then forced to
go downstairs and make myself comfortable sitting on the sofa. At
that point I would make myself a warm drink of oatmilk with a splash
of oat cream (organic of course) accompanied by two sugar-free
biscuits and two paracetamol. This usually enabled me to sleep well,
though I'd need several visits to the loo.
I'd been seeing my GP about swollen ankles which were being treated with Apixaban and Ramipril to thin the blood. I was also prescribed Furosemide to help release more fluid. This didn't seem to help. My pee volume remained consistently at about 100 – 150 ml, the frequency was just as high and there was little or no reduction in the swelling of the ankles. When my doctor sent me to a practice nurse she told me to frequently have my feet up and to wear support stockings. I was concerned about having cramps in my ankles when in that position. We agreed I'd try sleeping sitting more upright on the sofa with my feet on the footstool and covered by a blanket. I found I slept much better and Liz started going to bed earlier. As a result she started getting up earlier and sleeping better, Soon my bedding consisted of a duvet and pillow. I now stay in one position all night. I get to sleep quickly although I still go to the loo too frequently and often need to have my drink, biscuits, paracetamol and book to get me back to the 'land of nod'.
By the end of the first week of the new regimen, my ankles were looking normal and I could get my shoes on without effort. As I don't see my GP for three weeks I decided to stop taking Furosemide.
19th
March 2025
Since having a
chunk removed from my left ear due to a carcinoma, I've had
difficulties with hearing aids and was given new ones at the end of
last year. At first I had aids that connected with my phone. I soon
discovered that by the time I connected the aid to the phone, found
the app, clicked the particular function, made the appropriate
adjusted it and clicked 'Save', I could click a button. All I want
is a change from receiving both front and back, receiving front only
and receiving from loop. KISS – Keep It Simple Stupid. I guess
there are people who want or need such refinements but at my age and
the natural deterioration of my hearing it doesn't make enough
difference for it to be worth while. The sarcoma is not helping
because of both the lump behind the left ear and the intermittent
noises that overlay my normal permanent tinnitus. However, now that
I'm sleeping in a consistently raised position without change there
is no pressure on the sarcoma and no soreness. Also the buzzing and
popping in my left ear has stopped.
I'm finding that there
seem to be two levels of deafness: normal loss of high frequency
range for which hearing aids compensate, and a decline in mental
acuity which affects my comprehension. Often my immediate and
automatic reaction to my not comprehending something, is “Sorry,
can you say that again,” whereas if I wait a moment or two the
meaning can get through. I've noticed this with other folks of my
age.
However, my oncologist thinks that the tumour on my left parietal lobe is causing aphasia. This is showing as the occasional inability to comprehend words, read or heard. I sometimes say the wrong word though I recognise it's not what I meant to say and can correct it. I find following subtitles while listening to spoken dialogue very difficult to comprehend, often impossible. Some words frequently evade me. These I write in my journal so I can look them up.
20th
March 2025
I had a fall.
Trying to take my wallet out of my coat pocket the hall stand fell on
me knocking me iagainst the hall radiator and to the floor. Three
neighbours responded to Liz's call for help and got me to my feet.
Nothing too damaging other than a nasty cut, a black bruise and the
radiator was loosened from the wall!
21st March 2025
Having stopped taking Furosemide for a couple of weeks I haven't noticed that taking it or not taking it has had any affect. I am going to ask my GP about Apixaban and Ramipril. Do I really need these? My BP has been very good and none of my blood relatives have suffered strokes or heart attacks. I've only had thee A-Fibs over Christmas – none before, none since. Doubling Bisoprolol seems to have dealt with that. Both heart checks, one at Swindon and Hereford, reported that my heart is in good condition. My GP showed me a long list of statistics about strokes but I'm not a statistic! I think that in terms of strokes and heart attacks my risk is load.
24th
March 2025
I saw the surgeon
who removed the squamous carcinoma on my ear. When he saw the changes
in me over the past year he reached out a comforting hand. He agreed
to see me in six months time and, having helped me on with my coat,
gave me a big hug. Such care is rare in the our time pressured NHS.
I easily tire and by the time we'd had lunch, Liz did some shopping we got home around five p.m. Having long family vists on two days over the weekend then a full day out was rather too much for both of us. We were both so tired, and I fatigued, we were unable to attend our History Society AGM. Missing evening meetings is a frequent occurrence due to fatigue. I'm waiting to hear about the hospice's fatigue and stability clinic. I'm still not in pain or suffering anxiety but fatigue is an increasing problem . Since buying my mobility scooter I've been doing less walking.
Maybe I'm going to have to try to walk more.
26th
March 2025
After the plumber
had left I noticed two valves were leaking. In trying to tighten one
up I slipped and fell putting a six inch graze along my inner right
forerm.
27th March 2025
Genna, our Hospice at Home contact, dropped by and introduced herself. I'm going to have a regular monthly visit with help about fatigue and stability. Other visits and advice can be available on an ad hoc basis. Genna is going to investigate fall alarms for me.
28th
March 2025
The appointment
with my GP confirmed it was OK to stop taking Ramipril. Furosemide
can be taken when I need it. So, with frequent peeing an ongoing
problem I'm not taking it. I was peeing five or six times a night.
Last night I only had five visits.
29th
March 2025
On my way to bed
I slipped again while getting pyjama's out of my drawer. I fell
backward against the end of the bed putting a six inch skin graze
along my l left forearm. Liz helped me cover the wound with a clean
handkerchief held in place by a crepe bandage.
It seems that the combination of steroids and blood thinners make my skin thin. This is causing bruising and sometimes bleeding.
30th
March 2025
This has been a
month of slow decline in terms of stability, stamina and strength.
Stability has perhaps the most noticeably aspect. I guess the falls
are indicative of that. I commented on that earlier saying I hadn't
fallen yet. My head feels a little fuzzy. During the week of the
falls I felt noticeably tired, weak and unstable. Liz is concerned
about being able to leave me alone.
31st
March 2025
The Hospice is
arranging to contact someone about getting a fall alarm. I am
noticing a decline in stability, stamina and strength. Walking up to
the garage is slower and my negotiating steps demands more deliberate
movements.
I attended a Church funeral in Weobley, travelling down on my scooter. Half way home the scooter battery ran out battery. The battery lights were all lit, showing it was full, but it suddenly came to a standstill. Fortunately two members of the funeral pushed the scooter 100 yards to our house and into the garage. All that left me pretty exhausted .
I slept well last night only getting up getting up twice, once either side of my drink, biscuits, Paracetamol and book routine. I woke at 6:15 A.M.
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