08/08/20 Short walks

The heat makes it hard to do anything much - we've been between 30 and 36C for the last few days (depending on which thermometer you believe) and it hasn't let up much at night. Have managed some walks but not as long as I'd like for exercise purposes. I just keep taking the tablets - including Fybogel and Laxido last night, because the constipation has been back again. Fortunately that combination did the trick again this afternoon. It could be either the dex or the Lenalidomide causing it, or the combination of both.

06/08/20 (2) Good dex night

It turned out to be my best dex night yet - went to bed at the usual 02:00 or so, slept through till 08:15. The effect usually lasts two days, so tonight may go either way...

06/08/20 Small nosebleed

Had a very (and I mean VERY) small nosebleed overnight last night. It clotted quickly and didn't recur. So either my reduced number of platelets are still enough to do the job, or the blood thinner I'm taking daily (10mg Xarelto/Rivaroxaban) isn't working... Nothing like as bad as the one I had back in January which bled profusely and took at least 45 minutes to stop. I suppose I should report it to the chemo nurses at Springfield.

Dex night tonight. 01:15 and very wide awake...

Interesting and slightly worrying post on the Facebook group this evening:

"after xxx was doing extremely well according to his MM team and responding well to treatment he's become poorly again. Double vision and eye bulge, totally unstable on his feet. We were told to go straight to Barts on monday where they done bloods and lumbar punch followed by intrathecal chemo and an MRI. The cancer cells in his brain have spread and become active again."

All I can find on myeloma invading the brain (or any other part of the nervous system) suggests that it is an extremely rare complication. And not one that I much like to think about, while I've still got a brain capable of it.

05/08/20 Brightlingsea

Another government U-turn, and extended shielding for  the over-50s has been dropped like the proverbial hot potato after protests from all directions. One can hardly be surprised, as more and more government policy appears to be made up on the back of an envelope more in response to public opinion and political pressure than on the basis of solid evidence.  Nothing new on the myeloma front, but a near neighbour has been diagnosed with a slow growing cancerous tumour on her right kidney. They aim to operate within three months and to be able to save most if not all of the kidney, No chemo or other treatment before surgery, but something after to discourage a return. It's a strange thing but for most of my life I've been untouched by cancer among my contemporaries and near-contemporaries but now that seems to be changing. A natural consequence of advancing age I suppose, so not so strange after all.

Yesterday's plan was to go Brightlingsea for some sea air and radioactive potatoes for lunch (fission chips), figuring that on a weekday a small coastal Essex town wouldn't be too crowded. We got that part right, more or less, but failed to predict that the chippy would be closed.

The walk was OK, with the tide very high and waves splashing onto the promenade.

We did find a pizza / fish'n'chips place inland a bit and ate at a table just outside - not the best view, but better than nothing. And we did get the day's exercise, although not in as pleasant weather as we had expected.

03/08/20 Thorndon Country Park and personalised letter

A slightly cooler day today, and the "fatigue" back to normal so after lunch we went to Thorndon Country Park in Brentwood, expecting it to be reasonably quiet. How wrong can you be? Car parks pretty much full, and glad of the Blue Badge for getting us a spot. Visitor Centre open again (we didn't go in) and more people around than I think I've ever seen there. Had a good long walk but too many people for comfort, and constantly having to think about distancing and avoiding them takes much of the pleasure away. In fact I think about COVID-19 risk so much that it tends to drive cancer right out of my mind - unreasonable really, as one of them will probably kill me in time and the other one probably won't.

So now we await details of Boris's "enhanced shielding" for the elderly (apparently that now means over-50!) and vulnerable. I await my personalised letter with my individual risk rating, which has to be pretty high as I'm over 70 with a blood cancer.  I doubt it'll make much practical difference to me, as I had no intention of rushing out to shops and pubs and cinemas just yet. I shall continue to use my best-informed common sense as far as I can and if that coincides with government advice, so much the better. If it doesn't, that's just too bad. There's a long way to go before I shall feel safe doing anything much different from what I've been doing for the last three or four months. Basically I'm holding on for a vaccine that works for immune-compromised people and at least one effective treatment for early-stage COVID-19. If that takes us well into 2021, as I think it probably will, that's just too bad. I can wait...

02/08/20 Fatigue day?

I think yesterday was my "fatigue" day for this week. I don't like calling it that because I understand that all-out fatigue goes way beyond what I get, but equally it goes beyond just feeling tired. I'm getting an instinct - without any supporting evidence - that it's a reaction to the falling dex level three or four days after taking it. And if that's right, the reason why I didn't get the same thing when I was on double the dose (over two days) is that the dex level never dropped low enough. Maybe I could try splitting the current 20mg on  one day into 2 x 10mg over two days? Something to talk to Dr.Ch about next time. Before then I'll try to do a little research on the point.

Some quick Googling suggests this may be right. Dex fatigue a few days after taking it tends to increase with prolonged use of dex, and the combination with Revlemid / Lenalidomide (also a cause of fatigue by itself at higher doses such as my 25mg daily) can increase the effect. Well, I'm halfway through Cycle 3 of the current consolidation program and the last week of that is off Len. And after Cycle 4 I'll be off dex altogether (that's Sep.16th, if I've worked it out right) but staying on low-dose Len. I can stand a touch of fatigue for that long, especially if I know it's coming.

01/08/20 Hanningfield Reservoir

Another very hot day yesterday, apparently the third hottest on record in the UK. We recorded highs of between 33 and 36, depending on which thermometers you believe. Resisting the temptation to head for the coast on the grounds that everybody else would either be there or jamming the roads on the way there, we headed for Hanningfield Reservoir instead - both some water and plenty of shade on the footpaths between the (closed) Visitor Centre and the Fishing Lodge. That gave a decent length of walk and this is the view from one of the hides:

The many black bits are flies etc. trapped in spiderwebs across the opening. Personally, I've never seen the attraction of birdwatching. Seen one duck, seen them all... I hope an old friend and very keen birdwatcher never reads this!

Nothing new on the myeloma front today, I just keep taking the tablets and hoping for the best.