24/11/20 Frosty morning, and kidney cancer (not mine!)

 A cold and frosty November morning yesterday:

Bad enough to keep me inside until a quick Peppers Green Lane walk after lunch - followed by the now-inevitable post-exercise "fatigue" snooze. Then we had a kitchen crisis just as I was starting dinner - we have a complicated corner unit with sliding trays, and somehow the lower one fell off whatever is supposed to hold it in place. Getting it back beats me, and we have called in reinforcements (a helpful neighbour) for later in the week. I have a feeling it will need almost complete disassembly before it can be put together again.

I've been reflecting on the experience of an acquaintance who has recently had a brush with kidney cancer. Despite all we hear about cancer services being abandoned because of COVID-19, she was diagnosed and treated (surgery) within the space of a few months. She's lost half of one kidney, but they saved the other half. The surgery, and the recovery period, was tougher than advertised (not unusual, I think) but she has now been given the all-clear. No sign of cancer or the tumour to be found. 

An excellent result, and I am of course very pleased for her. All over and done with in a few months, back to normal life (insofar as there is such a thing these days). One and a half kidneys is very nearly as good as two. That's the advantage of solid cancers - get them early enough and you have a good chance of getting rid of them altogether before they go metastatic and popping up all over the place. It's very different with a blood cancer like myeloma - there is just no way of getting rid of every trace of the cancer. Even the very powerful chemo drugs used before stem cell transplant (e.g. melphalan) always leave a few bad plasma cells behind, or some may make it through harvesting and then get returned to you later. That's why transplant is always followed by relapse, sooner or later. It's never 100%.

Being stuck with an incurable cancer that I know is going to be with me for life, even if in remission for as much of that time as possible, must be very different from being given the "all-clear" from a curable solid cancer. I don't have to worry about whether mine will come back again - I know it will, sooner or later. My acquaintance must have to live with a constant fear that it, or maybe another cancer, will come back. It's the Sword of Damocles. Which is the better - the chance of a bad outcome or the certainty of one? I really don't know.

23/11/20 Great Notley, and fatigue

Not a lot to report. Pill Organisation seemed to go rather quicker than usual, not sure why. Went to Great Notley Country Park for the permitted exercise, and had another sleepy collapse when we got back. After a few better weeks, the "fatigue", if I can call it that, seems to be back. The S/F/L cocktail was if anything, a little more effective than I might have wished...

21/11/20 Out of Xarelto

A slightly better day today, did the local triangle walk in the afternoon. Pill management has gone slightly wrong - ran out of Xarelto/Rivaroxaban (blood thinner) and can't get more until probably Tuesday. Not too much to worry about, I think, but need to work out a way to get them back in sync with the other GP pills.

Last night's Senna/Fybogel/Laxido cocktail worked well. Just the Senna tonight, I think.

20/11/20 (3) House Stark

Did an extended version of the "short walk" in Central Park after the Tesco delivery, including (small) sausage rolls for lunch with our coffees from the Cafe. There go the more physical health benefits...

Coldest day of the year so far. Hat, coat, scarf, gloves. Winter Is Coming.

Fybogel tonight. Maybe Laxido as well.

20/11/20 (2) Mental Health

Slept well for a dex night, right through to 07:45. Got up to see a sharp frost outside but it was gone within an hour or so. Alexa tells me it's 3C outside.

Tesco delivery due between 10 and 11 - we may go somewhere for the usual "exercise" between that and backgammon time. Got to keep moving, and it's good for what we now have to call "mental health"...

We have a computer disaster downstairs. Must go fix. Or try to... Delayed breakfast, I think.

20/11/20 Eggs and Parkinson's

Another grey wet start to yesterday, and a lot colder than recently, so we decided Maldon was out of the question. Things improved in the afternoon, so I did the local Peppers Green Lane walk and went down to the end of the lane to make it a bit longer. No fatigue collapse afterwards, perhaps the result of two dex mornings.

To return to the eternal topic, the constipation issue has been good since the last crisis but I was tempted to add a Fybogel to the daily Senna yesterday evening but decided to give it one more day. TBH I hate every day being dominated by this and I'd give a lot to find a regime that gave a consistent result day after day. But I probably didn't help myself with three parts of a five-egg mushroom and asparagus omelette a couple of nights ago. A boiled egg for breakfast twice a week and a fried one on Sundays plus occasional poached or scrambled eggs for lunch don't seem to have too much of a "binding" effect but eggs for dinner seems to be a bit different. As far as I can tell, most myeloma drugs can cause constipation but I think dex is the main culprit for me. Unfortunate, as I can see a large pile of dex pills in my future...

Today's post included a copy of Dr.Ch's monthly letters to my GP Dr.Ku. After saying I've had "a difficult couple of years" he suggests that the possible Parkinson's symptoms may be caused by Lenalidomide. That ignores the fact that most if not all began way before I started taking Lenalidomide or even its close relative Thalidomide. Anyway, looking forward to the neurologist appointment on 1st December when I hope to get some clear answers about this. I don't want to have a Parkinson's diagnosis on top of the Myeloma, and having one would mean some difficult decisions about how I pay for treatment. But that's a problem for another day.

19/11/20 Dex and sea air

 Yesterday (Wed) and today (Thurs) are my two dex days of the week. The pattern is now well-established - I get to bed at my usual time of 02:00 or maybe a bit later, sleep uninterrupted for four or maybe four and a half hours, then get up because going back to sleep is just not going to happen. I'm no longer awae and on the computer at 4 or 5 am!

Hoping to go somewhere for a good, long, and preferably different, walk today. Just what you need to keep the myeloma at bay, not to mention an excellent sausage roll for lunch. There's a small issue in that the new shielding guidelines for the vulnerable and extremely vulnerable (that covers both of us) encourage exercise outside while also saying we should not travel unnecessarily to find it. Does Maldon count? A quick look at Google Maps suggests that it is the nearest bit of sea/estuary for that healthy bracing sea air...