The succession of urinary tract infections followed by repeated atrial fibrillation attacks and months of broken nights of sleep left me feeling a decided loss of vitality – I call it 'flatness'. I'd not been contemplating or meditating much and have found myself dozing a lot. My stability declined, especially in the early mornings and evenings. I now have to ascend stairs one at a time, though gravity helps me descend normally, but not too quickly I hope.
However, by the end of January I began to emerge from my hibernation. I seem to have more stability and am still without pain, only minor and intermittent discomfort when I walk ('poddle'). My flatness has slowly lifted and by the end of the January I was feeling a greater sense of vitality again. Maybe the medications my GPs have pouring into me are making are a difference – pharmaceutical man? Liz has been wonderful during this floppy time, cheerfully enabling me to rest when I need to, and that's been quite a lot.
Here are the
latest blog entries. Thanks for the encouraging feedback.
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.
The strory continues . . .
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