08/06/22 Bits and pieces

Yesterday saw my GP DrKu. He asked for the appointment as a post-operation follow-up but we spent most of the time on my blood pressure, which he did not regard as excessive. I failed to get across to him that no matter whether an average of 138/86 is cause for concern or not, the sudden increase from my long-time stable average 120/70 requires an explanation. Anyway, he's put me on a low dose of Lorvacs which is a vasodilator for the blood pressure and a long-acting diuretic instead of the Furosemide. We'll see how that goes.

After that we went to Braintree & Bocking Gardens, now a favourite haunt, for lunch an some fresh air and "exercise" on the scooter. When back home I had a phone call from neurosurgeon Mr.Ib asking after my progress, but his real reason was to ask me to join a research project about patient attitudes to robotic surgery. Needless to say, I agreed.

Today was my third home physio session. I'm still impresses by her, and she's impressed by my progress. Her "hands-on" work is really good. 

07/06/22 Knackered

Several things to write about, but just too tired tonight. Worst hit of  myeloma fatigue for a long time. I'd go to bed if I could find the energy to get out of this chair...

I'll be back tomorrow.

06/06/22 Normality returns

Platinum Jubilee weekend over. Four-day holiday over as the country returns to normal. And I get some more blood taken at Springfield, So it's another nervous week waiting for the PP and FLC results, particularly because it's been quite a while since the last lot because of my operation, the jubilee, and my haematologist's holiday...

05/06/22 Better

Slept well last night, woke up feeling much better. Looking back, I have rotten days like that occasionally (by which I mean rather less than once a year}, and they are usually fixed by a good night's sleep.

I got into this CPAP thing from the myeloma/fatigue angle. There's evidence that my sleep is generally not as restorative etc. as it should be.

A couple of slightly better BP results yesterday, but still way above where I used to be.

03/06/22 Bad

That's how I felt for much of yesterday, and worse today.  Woke up late at 09:30, movement so slow that it took a (subjective) age to get the three yards or so to the bathroom...

Improved through the morning and we went to Central Park for lunch and coffee. Worse again once back at home. I went upstairs for a lie-down, slept right through tea, needed help making dinner and so little appetite that most of mine went in the bin.

Temperature normal, BP still too high (average over last week is 142/87 as against my usual 120/70, more or less). Sue has pointed out that I should do a LFT, although I have no other COVID symptoms. I need her help with the fiddly bits, so later tonight.

UPDATE: the LFT came out negative. Feeling a bit better now, off for shower.

02/06/22 Surprise!

After another round of all the relevant phone numbers at Broomfield this morning and failing to get through to even a single human being about the CPAP machine that was prescribed for me in September 2021 and promised for Christmas, I did let my normally courteous and polite language slip a bit on the couple of the messages I left. It must have worked, because in the afternoon I had a call from a very pleasant and helpful man from the Respiratory Centre, and now I have an appointment to collect a shiny new machine on the 10th!

01/06/22 To sleep... or maybe not.

It's very early (00:17) on Wednesday morning. Yesterday I went to bed at about this time, an hour and a half earlier than usual and hoping for rather more sleep to stop me dozing off so much during the day. The result, of course,was tat it took an hour and a half to get to sleep rather than the usual minute or two... and I'm still waiting for the NHS CPAP machine I was promised back in September after being diagnosed with sleep apnoea...

On Monday we went to Hanbury Gardens to say hello to some of the Epping Petanque people an to test out my plan of using the folding walking frame (with wheels at the front) to let me play for the first few months. I'll get a bag to strap to the top to hold the boules and other bits and pieces. It should work OK most places, but possibly not in the sand at Birchanger. My plan at the moment is to start driving again in a couple of weeks, gradually extending my range until I start playing again in early July. Crossed fingers, etc.

BP is still high, but a little down on the last couple of days. I have GP appointment already in the diary for the 7th. I 'phoned the secretaries to get a message to him and add it to the subjects to discuss, and they gave me an email address to send my diary a day or two in advance, And the other god thing is that I've got myself off painkillers altogether. Haven't had as much as a paracetamol for two days now. And next round of myeloma blood tests coming on the 6th...