A Long, Grey, Cold Winter - but here's hoping . . .

After a slightly difficult January, my situation seemed to have stabelised, although doesn't suggest any major impovements.  The most wonderful thing is that the sense of peace and freedom from pain, all but from discomhort throughout my dear old fatigued body, enables me continue to do quite a lot - though very, very slowly.

Both Liz and I feel very supported by family, friends and our medical our team.  The latter seems to be expanding by the day.  We now have regular close contact with an excellent GP, a cancer support lady in the urology department, a cancer support nurse at the hospice, expertise from the Yeleni support charity and, hovering in the background, my oncologist.  

Here are the blog entries for the first half of February:

3^rd 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 28^th 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

Here's a copy of a letter to my kinesiologist:

I saw my very helpful GP on Friday and asked about having intermittent assessments of stamina, stability and strength. This, I thought, might provide guidance as to the prognoses of the various conditions I have. This in turn should give an early warning system to help me plan ahead rather than react to emergency.  Not having pain is good but it's difficult to be objective with such subtle and intermittent changes. My GP doesn't know of such a service in the NHS!!  So I wondered whether such a assessments might be possible in your field.

I'm pleased to report that I'm getting consistent support from one GP now.  She has changed my medication and as a result I'm finding it easier to get upstairs.  What do you think?

***

I sleep well from 11ish to 2 or 3 a.m. but the pain in my right ankle or simple inability to sleep gets me out of bed to the sofa. I use a torch rather than main lights to keep the room ambience low.  The pain stops immediately. A hot oatmilk drink, two sugar-free biscuits and the read of a few pages of a book and I'm soon asleep.  I then sleep soundly until 6 or 7 a.m. - sometimes nearer 8. 

 15th 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.