21/01/20

Alarm worked perfectly last night at 02:45 and again at 03:00. I didn't - fell asleep again until 04:45!

Making a deliberate attempt to avoid reading depressing stories about SCT today. I'm going to go through with it, no matter what it takes, and that's all there is to it. End of subject.

Big news yesterday and today about the accidental discovery in Cardiff of a new type of T cell with the possible ability to target all types of cancer cells. Could be a big breakthrough, or maybe not like so many others. Even if it does turn out to be the "magic bullet" it'll take years to go through all the trials and become generally available.

20/01/20

Quiet sort of day today. Didn't do a lot apart from take pills and read probably more than was wise about transplant and recovery. Side-effects from the mobilisation process (getting the stem cells out of the bone marrow and into the bloodstream) and the injections I'm going to have to give myself before the harvesting and the transplant start. Not to mention several hospital trips for tests etc. first - and if that means going to The London Clinic in Marylebone every time it'll be a pain as there's no very easy route there from here. It'll be bad enough for Sue visiting, we don't need to have to do that any more times than necessary.

Definite red hands this evening, and I'm now two days post-dex so that theory can be thrown out. The increased thalidomide looks a likely culprit, except no mention of it in the long list of side-effects.

19/01/20

Got the tax returns finished off yesterday (normal life continuing as usual) and had a fairly busy day today. Made two batches of spreadable butter in the Thermomix, then changed the hideously expensive water filter in the kitchen, It lives under the sink and it's a harder job than it might sound, especially as I'm rather less bendy than I used to be. Then off to Saffron Hall for an afternoon of Beethoven and back in time to cook dinner.

A lot of horror stories about SCT (Stem Cell Transplant) on the Facebook Myeloma Support Group today, particularly about the lengthy and difficult recovery process. I can't say I'm looking forward to what might be several months getting back to something close to "normal". I keep reminding myself that it's only the people who have bad experiences who tend to write about them (although, in fact, it's more often their carers who write the posts). People who sail through transplant with few if any problems are too busy just getting on with life. Probably...

18/01/20 (2)

Up the stairs and down with no hands and alternate feet. And up again. Best stairs day so far.

Had a bit of a walk/roll along the river at Dobbs Weir before lunch at the Fish and Eels. One of the rare sunny days of this winter, but temp down to 1C this evening and snow forecast over much of the country, but it's unlikely to come as far east and south as we are.

(Photo shamelessly pinched from Sue's Facebook feed)

18/01/20

Red hands are back. Possibly just a touch on soles of feet as well. It's a dex night of course - haven't spotted a connection with that before.

Visited the vampire nurses yesterday for another Velcade / Bortezomib injection and got the results from last Monday's bloods. No significant change, and PPs still "detected but level too low to be measured". PPs are only an indirect indicator of plasma cell  numbers and activity (bone marrow biopsy is the only way to get direct measurements), but a very strong indicator that we've got the little devils under control.  All very good.

Now into the last week of Cycle 3. Then it's the "week off", then Cycle 4, then the transplant. It's getting closer...

16/01/20

The double alarm worked last night. Got up with the right ankle/foot oedema very much down but the left still quite marked. The left calf felt tight and I measured the circumference as 2 to 3 cm bigger than the right - and that's on 40mg Furosemide a day. Definitely haven't fixed this yet, the question is what level of fix is long-term acceptable?

Thinking ahead

In two days time I start week four of Chemo Cycle 3. Then there's the "week off" followed by Cycle 4 and then - after a currently unknown period of time, probably no more than three weeks, it's the transplant. We should be starting that process in early March, so it's no longer in the distant future, it's moving rapidly into something rather closer.

There are practicalities to sort out. I'm going to be in hospital for a minimum of two weeks, probably four or it could be longer. It all depends on how long it takes for my immune system to rebuild itself and my white cell counts to get back to normal. So there's all kinds of household stuff - bills to pay, salt to put in the water softener, emergency contact numbers for electricity and phone and water and so on, and lots more I haven't thought of yet. Everything Sue needs to keep the place going and deal with any likely problems while I'm not around. I started a list a week or two ago but need to get back to it (after we've finished her tax return, which should be by this weekend - I've done mine).

The transplant process itself will be tough enough (I'll leave what I know about the details for nearer the time), but then comes the recovery at home. The general view among people who've been through it seems to be that it takes a year for a complete recovery, although I should be reasonably functional after two or three months.

More on this later, probably.