15/11/19 (2)

Two hours good sleep last night, and another two thoroughly interrupted. That's where a Kindle Paperwhite shows its worth!
Ankle oedema much less visible in the morning, but still had trouble getting left slipper on so instep must be more swollen than it looks.

The new Pliazon cream already seems to be having a beneficial effect on hands.  I'd  buy some stock online, but the only place I've been able to find it online so far is from a homoeopathy store, and I do have some principles. No way will I support that dangerous quackery.

Temperature was 36.9 last night, 36.4 this morning. All OK - 38.0 is the trigger point for contacting Oncology. Walking is pretty good, but not good enough for the stairs without hands.
12:55 now. Awaiting phone consultation with Dr.Ku (GP), booked for 11:00 - 13:00. Five minutes to go...

15/11/19

And here we are at 02:30 back in Dex World again - wide awake and not feeling remotely like turning in for the night.
Apart from getting the Velcade injection, not much gain from the visit to the chemo nurses at Springfield. The main thing was to dodge the harder questions and to leave them to to Dr.Ch on Monday. But they did give me a 100ml tube of Pliazon cream for the dry thinning skin on my hands, lower legs, and feet.

This is week 5 of cycle 1, and it will run directly into week 1 of cycle 2 - no "week off" as I had that in the week of the lung infection.

Still no reaction at all to the Velcade. If you took all the comments on the online groups seriously, you'd never touch the stuff because of the problems you'd expect to get. It's important to remember that the online people are only a small self-selected group of myeloma patients and carers in an "echo chamber" reinforcing their own negative experiences, and that people who are going through treatment with no problems (or not many) generally are too busy getting on with life. Apart from the ones who write blogs, of course...

Pill boxes

All loaded up and ready to go for next week:

Well, almost. I'm a day or two short for a couple of the pills, before I get a new batch for the next chemo cycle. That's another thing to talk to the nurses about tomorrow. Must make a list...

Morning feet

The "normal" state, taken as soon as possible after getting up this morning.

Swelling up again, only half an hour later...

Trapped nerve

The "trapped nerve" problem in my right thigh - which goes back several decades further than my myeloma or my MGUS - is starting to come back again despite the 20mg of amitriptyline I take every night. Nothing like the searing white-hot knives of old that made doing anything else impossible, now it's just the gentlest of hints that it hasn't gone away altogether and might just decide to come back.

Relevance? None at all, except that if I had to deal with attacks of that in my right leg as well as all the lost mobility on the left side and the oedema in both feet - well, that wouldn't be easy. I have a 'phone consultation with my GP booked for Friday, hope he can come up with something. After all, the amitriptylene was originally his idea as a diagnostic trick to confirm that it is a nerve pain problem, not a treatment.

Also need to talk about blood pressure (now stable again around 110/70 after being very low while I was in hospital), and about any water retention that may be behind the oedema. Diuretics would be the obvious approach, but I don't want to spend any more time p***ing than I do already...

Ankle / foot oedema (12/1/19)

A difficult thing to photograph single-handedly - they look worse IRL. You'll just have to take my word for it. This is at the end of the day, after spending as much of it as practically possible with the left leg in particular elevated.

Woke up this morning... (12/1119)

...after a good six hours unbroken sleep, starting at 0130.. That's five days post-dex for this week and probably the best night yet. The ankle swelling was right down to normal, although the last couple of mornings it's been little better than the night before. Now (1130) swollen up again. Spending as much time as possible with the left leg in particular elevated, but can't spend all day like that.
Also getting tiny little cuts on hands and fingers - only a couple of mm long but quite painful. Dry thinning skin is a recognised dex side-effect, so that's something else to talk to the nurses about on Thursday. Meanwhile, hitting the Neutrogena hard...