30/09/21 WIC...

 Last day of September, and the outside temperature is down to 6C. Winter is coming...

I've already got one finger split (on end of left thumb) which is taking its time to heal. Going back to lots of hand cream. Low temperatures will undoubtedly affect boules - I'm already wearing a well-insulated glove on left hand (the one that holds the boules yet to be played), and the right hand stays in a pocket in between deliveries. I may need a glove for that before long as well - noticeable that a few more people are starting playing in gloves already.

I've been prone to these splits for several years pre-myeloma but no doubt that the skin-thinning powers of steroids have made the problem worse. I used to think of 10C as the threshold for gloves outside, now it's more like 14 or 15.

Springfield at 11:00 for Zometa and the next batch of meds. Time is going to be slightly tight as I have to be home in order to drive Sue to Ongar for a steroid injection into her bad knee at 14:00. Should be ample time as long as the Springfield pharmacy get the meds ready on time (not to mention right first time!). If they don't, I'll just have to leave early and go back to collect the meds later - extra fuel consumption which I'd rather avoid at the moment with the fuel supply "crisis" not yet resolved.

29/09/21 Hard to find something myeloma-related to write about.

Some days it's hard to find something myeloma-related to write about. But this blog is supposed to be a day-to-day record of living with it, so if nothing much is new or changing, then it follows that there isn't much to write about. And today there isn't.

Played boules at Tower and happy with my game although my side lost narrowly - three of us (two boules each) against three of them with three boules each. I'd rather have the three boules every time as it's so often that the third one is the best. The forecast rain stayed away until the very end of the match, then it came down heavily and we all beat a rapid retreat to our cars and home.

The current state of my myeloma - which is a very individual disease - is so good that I may well die of something else before the myeloma gets me. Or maybe not, but at least there's a chance that the myeloma will not significantly reduce my life expectancy.

Most of the time I feel perfectly well, and people tell me I look well, although I know the reality is that I'm not and sooner or later a relapse will come.. I'm slower moving around than I used to be, and even with a walker I don't reach the speeds I used to think normal. My stride length has shortened as well. Stamina is nowhere near pre-myeloma levels, and the fatigue and falling asleep all the time are a problem. I'm hopeful that treatment for the newly diagnosed sleep apnoea with a CPAP machine will help to sort that out. 

And, of course,  waiting for the letter about my "Primary 3" vaccination to arrive. Probably should be this week.

28/09/21 Ongar Finals Day

Just for the record, here's a photo from Ongar Finals Day on the 19th. My walker and I are doing our bit for the disabled and diverse. I don't really need the walker there but it is a handy way of having a personal seat and of bringing more stuff up from the car in one go if rain looks likely etc..

28/09/21 Consultation

To get to my face-to-face (although both facemasked) consultation with Dr.Ch I had to fight my way past two layers of receptionists who were convinced that the appointment was for a 'phone one today. But I made it in the end, only a few minutes late. Additional waiting time was not too bad.

We agreed that I'm doing very well and that "my biology" (whatever that means)  is of the right kind. Discussed the sleep apnoea diagnosis - pleased to see from the report of the meeting that he spells it properly, which encourages me to revert to it. He knows respiratory consultant Dr.Ha (Broomfield) well and will discuss my case with him. Talked about these mini-rashes but didn't have one to show him. Probably a result of Lenalidomide's ability to alter immune system responses opening the door to minor viral or fungal infections of no particular significance - an indirect side-effect rather than a direct one.

Changing bisphosphonate dental checks from eight-weekly to twelve-weekly. Calcium tablets confirmed as one daily rather than two.

That's about it. The appointment meant I couldn't make the usual Monday morning boules at Hanbury Gardens (Epping)  but I scrambled a couple of eggs for lunch and then went for the more informal afternoon session. Played one game and having trouble with all my throws going off to the left. Obviously something wrong has got into my throw or my grip(s) - if it's dry enough I'll work on that in the garden later before I go to Tower in the evening.

27/09/21 Boules and fuel

Not much to say today. Played boules at Ongar, not at my best by some distance. Played three games, lost all of them. My directional control was way off for some reason. You get days like that. At least the constipation management that makes these morning sessions possible is going well - I'm getting along with Senna only, varying the dose from zero to two according to need, and it's been a long time since I needed Fybogel let alone a Laxido. Or a glycerine suppository...

With the current (and largely media-driven and imaginary) fuel crisis I stopped in a queue for a BP station on my way to Ongar. The queue didn't look too bad and although I had well over half a tank I joined it and came out the other end with a full tank after half an hour.  Well, I'd be lucky to charge an electric car in that time even if I was first in line. The second filling station on the way to the piste (a Tesco Express) was out of all fuels, so I made the right choice. I think a full tank will see me through to the end of this farce.

Later today, face-to-face consultation with my haematologist at Springfield Hospital, and depending on the weather I may go to Hanbury Gardens (Epping) for the more casual after-lunch session. Weather forecast is better for the afternoon than for the morning.

I think that's all for tonight. I may have more after Dr.Ch for tomorrow's post.

26/9/21 Autumn at last?

A different kind of day yesterday - a distinct autumnal feel to the air until the sun came through late afternoon. A day of small jobs and not much else - didn't get out for a walk but comfortably hit my activity target anyway, And finally tightened up that soap dish repair to a state I'm happy with

To my great surprise stayed awake through all one and a half hours of "Strictly" (even though at times it felt like rather more). Possibly something to do with the dex I took in the morning, which of course means a dex night tonight.

Cleared up the confusion over my next haematologist consultation. Secretary Sarah got it wrong (unusual!), and it will be face-to-face at Springfield on Monday 27th at Springfield Hospital. Unfortunately i doesn't look as if I'll have any mini-rashes to show him.

Our friendly local farmer has been fertilising the field at the back. Despite the lack of wind that's left us with a dusty deposit on the back windows, and the window cleaner only came last week. so I shall have to get out of the landing window onto the flat roof to deal with it. A few years ago it was no problem to squeeze out through the quite small window but I was a lot bendier then than I am now. Might be interesting...

There are stories of the current shortage of HGV and white van drivers affecting deliveries to pharmacies as well as to petrol stations and supermarkets. I'm due to collect new meds on Thursday. Fingers are crossed.

24/09/21 (2) Sleep apnea confirmed

Had the phone call from Dr.Ha at Broomfield. Despite getting only four hours on the sleep monitor that night there was enough evidence to diagnose moderate to severe sleep apnea. That agrees with the under-mattress sleep analyser, which behaved much better and put me a little way into severe territory. Here's a screenshot from the app:

and the continuous O2 saturation monitor gave me my worst score so far:

SnoreLab looks almost healthy by comparison:

and just for the sake of completion, here's just part of my Oura ring's report on last night's sleep:

For the sake of total completion,we might as well have a report from the portable ECG machine. It said "No Abnormalities":

It's going to take three months at least to get an NHS CPAP machine as prescribed by Dr.Ha. I'm looking into buying something to get me through the gap and act as a backup if needed.

It was another magnificent Indian Summer day. I spent most of it doing various small jobs around the house but we did find the time for a walk around Oaklands Park and a sausage roll for lunch. Skies as blue as you might hope for in midsummer:

Getting there was slowed by long queues for petrol stations.. People panic buying after government advice to stay above quarter-full in your tank. There again, our Tesco delivery today had no salmon and no orange juice. Cearly the supply chain problems and shortage of HGV drivers are having an impact.

Still not heard anything about my third  COVID vaccination. For the immune-compromised like me it's "Primary 3" (because there may be 4 and more in six months time and beyond), and for everybody else it's a booster, same injection either way!