13/08/20 (2) Sunrise & the Facebook Myeloma Support UK group

Well, it wasn't much of a sunrise.

Red sky in the morning, sun not up yet:

Just a murky grey haze:

And finally the sun broke through. Much redder in real life than it appears here:

It wouldn't have been worth getting up for if I hadn't been wide awake anyway. And at 07:45 we had a short heavy shower. Still raining gently now (08:05), and thunder rumbling in the distance...

Myeloma content in this post: zero, apart from the dex being why I'm around at such ridiculous hours.

I spent some of the time on the Facebook Myeloma Support UK group, reading through posts and comments I've only skimmed over the last few days. It makes me realise how much further there is to go on this road. There are people on second and third lines of chemo (if not more), people who've had two transplants (and not the "tandem" kind, which is planned that way from the start and more common in the USA than in the UK). And people with horrifying tales of Peripheral Neuropathy (mainly feet), spinal surgery, as well as the usual dex side-effects. I've done remarkably well so far, and sooner or later it's going to get a lot worse. A year on, and still just a beginner. 

More bloods to be taken at Springfield tomorrow afternoon, and then the waiting bit to find if the PPs and FLCs are still behaving themselves. 'Phone consultation with Dr.Ch on Monday and Zometa on Tuesday. Maybe that little burst of activity coming up is why I'm turning all philosophical again.

13/08/20 Dex night and heatwave

 04:05. I went to bed just after 01:30 and slept, with plenty of interruptions, through to 03:45. Two hours and a bit, which is on the low side of normal for a dex night. The same tactic worked much better last week when it wasn't quite as hot. Sunrise is 05:39 according to the BBC weather site, so no excuse for missing it this time! It also gives the outside temperature as 18C, and in my study my thermometer is at 29.5C - there's a huge amount of retained heat after the last week or two. It's going to start off very hot again - upper 20s not 30s - with a chance of thunderstorms early afternoon. To further increase the confusion, my phone says 22C for the nearest weather station in Writtle (five miles away), which makes it another "tropical" night above 20.

I've got a bit obsessed with the weather, but I claim it's excusable after what I think is the hottest and longest heatwave in my memory. Summer 2018 was much longer of course, but IIRC it never got quite so hot for so long. And you don't need all this and dex as well. Climate change? Not a topic for this blog!

12/08/20 (2) Peak heatwave

Probably the hottest day yet, right from the start. No relief in the morning unlike yesterday.

After breakfast and the obligatory cappuccino from the Sage coffee machine I went to the GP surgery to collect prescriptions for both of us - one thing I can now do to take a little of the strain off Sue. Much of the car park was taken up by a truck unloading a large number of portable air conditioning units - they must be putting one into every room. Things have also changed in that patients are now allowed into the waiting room and up to the reception desk and dispensary window although under strict distancing rules, and there are perspex screens to protect the staff - so collecting the prescriptions was a lot quicker than it was in the days of queuing up outside and waiting for someone to notice you and come to the door.

The temperature was so high that I allowed myself to declare that expedition sufficient exercise for the day, which it certainly wasn't. I've felt fairly good all day (possibly a touch of dex mania from the 20mg this morning) but it was just too hot. The next thing is to find out what sort of dex night I'm going to have tonight.

Nearly. Not quite but very close. Highest reading I saw on the outside thermometer (in full shade, surrounded by leaves so probably some transpiration cooling, but no max/min function) was 37.5C or 99.5F. The digital weather station maxed at about 33.2C (91.8F). It certainly felt hotter than that! In theory a digital sensor should be more accurate than a simple alcohol thermometer, but there are reasons to doubt it. I've already sent one of those back because it was consistently about 4C lower than everything I could test it against. This one doesn't appear to have a consistent error - it under-reads at high temperatures and over-reads at low ones.

12/08/20 Tollesbury, and a daring lunch

At risk of repeating myself too much, another very hot day reaching 35C give or take a degree or two by mid-afternoon, although it was cloudy and cooler in the morning. We drove to Tollesbury and had a decent walk by the Marina and then along the sea wall to the renowned Tollesbury Salt Marshes (a SSSI). 

Also had what was meant to be a light lunch in (yes, IN) the Tollesbury Cafe. We started at one of the two tables outside, but it was so hot that the invitation to go in was too hard to resist. All the COVID precautions were there in full force - reduced number of tables, one-way flow, hand sanitiser stations at both entrance and exit, and so on. Well, it was going to happen at some point.

"Light" lunch was a Tuna Melt panini, which came with salad and coleslaw and crisps. Enough of a meal that all we had in the evening was poached eggs from our neighbour's chickens. Very good they were too - thanks to Amanda and Henry!

Last Lenalidomide for a while last night - tomorrow starts the last week of consolidation Cycle 3, and that's the week off but the dex keeps going through to the end of Cycle 4 in mid-September.

10/09/20 (2) Myeloma anniversary

My actual myeloma diagnosis is dated 06/09/20, but it's now just about a year since my GP 'phoned me to say that the X-ray on my troublesome left hip had revealed a big osteolytic lesion there and some smaller ones elsewhere. That's when it became almost certain that my MGUS had progressed to myeloma. So I'm making 10th August the official birthday of my awareness of my disease. That's one year's survival ticked off. Many more to come, I hope.

10/08/20 Shoulder problems

Just as hot again today (35C on the outside thermometer) but I seem to be handling it a bit better. Maybe yesterday was my weekly "fatigue day" to complicate things. Main problem today has been the back of my left hip - I tweaked something when carrying a heavy delivery of cat food into the garage with one arm a few days ago, and the result has been bouncing back and forwards between right shoulder and left hip ever since. It took several hours to settle down this morning, which could alternatively have been interpreted as falling asleep in my chair downstairs... But when you can't bend as far as the bottom rack in the dishwasher without a vicious stab of pain, something has to be done, even if that something is basically doing nothing.

Better now, so time for daily exercise. Yesterday was turning left out of the drive, so today I'll go the other way. Anything for variety.

09/08/20 Too hot!

It's been up in the low 30s again today and despite what should have been a refreshing breeze I've found it really difficult. Sue's coping with the heat better than I am, and rather than acclimatising I seem to be getting worse day by day. I'd like to blame it on the myeloma or the dex or the Lenalidomide, but I don't think I can. Forecasts are for another two or three days of this before it breaks with the inevitable thunderstorms and flash floods. The sooner the better for me, because it's been a real strain finding the energy to get out for a bit of a walk or to cook the evening meal. I'm not usually good in the heat, but not usually this bad.