27/10/19 Bill Turnbull programme

Yesterday we watched Bill Turnbull's TV programme about living with prostate cancer. A part of it was about the shock of getting the cancer diagnosis, and not for the first time we seem to be unusual because it just wasn't like that for us. I knew I had MGUS, and therefore a slightly increased risk of myeloma, for a year but certainly didn't expect it so soon - if I had done, we might have spotted a couple of signs a month or three earlier. Sue was aware, but had I think put it pretty much out of her mind. We were 95% sure it was myeloma for a few weeks before it was formally confirmed, so neither of us had much in the way of "denial" to be challenged. For me, it's just the next hand of cards that life has dealt in our direction, to be played as best we can. There's no point complaining that the dealer isn't being fair, you just get on with the game.
The rest of the Turnbull programme was about alternative treatments, and that felt wrong all the way. For a start, his conventional treatment was going quite well and there was no real case made for going off in other directions. The section on cannabis seemed designed more to show how daring he was by fudging the borders of legality on TV rather than anything else, and it didn't do anything for his PSA levels. Then he moved on to a vegetarian diet and that didn't do much good either - the programme ended with his PSA back up into unpleasantly high territory. And never any real contrast with the orthodox routes of radiotherapy and surgery. He just seemed to be floundering around, looking for a magic cure but unable to stick with anything for long enough to give it a chance.
If there's one thing I take from a rather messily constructed programme, it's this: choose your path, and stick to it. No harm in a little wandering to the side here and there, but don't leave the path altogether. Others have been down the road before, so learn from them what works and what doesn't.

Stairs

Done it! Both legs, no hands.

24/10/19

A different kind of day today. Went to the dentist to begin a crown replacement - when he did an extraction some time ago he found a tiny hole under the crown on an adjacent tooth, which would eventually have led to decay and a possible infection route into the bone, which is something I don't need right now. Some fancy new dental imaging technology, which meant he spent most of the time looking at a screen rather than at my teeth, which was slightly disconcerting. Back in a fortnight to have the temporary crown removed and a "permanent" new one in its place. There was some concern about doing the dentistry while I'm on bisphosphonate bone-strengthener, because there is a slight chance of "osteonecrosis if the jaw" which might have meant big problems. But no sign of ONJ and Dr.Ch said OK to go ahead as long as the dentistry was confined to the top of the tooth and wouldn't go into the bone at all. Which it was, and didn't.
Dental anaesthetic now starting to wear off, which is just as well as I have a couple of phone calls to make this afternoon.

Walking is still good - haven't quite made it up the stairs without holding on, but it's not far away and things usually improve as the day goes on. It's probably pretty much as good as it's ever going to get, because the damage to the hip joint caused by that lesion and "extra-medullary mass" isn't going to go away. I suppose a hip replacement might be an option at some stage, but that wouldn't be straightforward. This is guesswork, but I imagine that there would need to be some surgical reconstruction / reinforcement of the weakened bone on the pelvic side of the joint to give something solid to anchor an implant to.

No unpleasant side-effects from yesterday's Velcade injection. That's good.

As for the Dex sleeplessness - went to bed at 04:45 last night and read for probably half an hour. Woke up about 07:30, slept again till 08:30, then nothing until got up a bit after 09:00. Still lots of Big Bang Theories to keep me going in the early hours - not sure what I'll do when I finally get to the end of those. Had another 20mg dexamethasone this morning, so expecting a repeat performance tonight...

23/10/19 (3)

For the sake of completeness, here are tonight's pills:

There are mid-day and evening ones as well, between one and three at a time. No photos of them.

23/10/19 (2)

We now have the full results from the bloods of 14/10 and 22/10. They mostly look pretty good to my amateur eyes. Red blood cells are a little low, will ask Dr.Ch about that on Monday.  No paraprotein level - they won't check that again until the start of the next 5-week chemo cycle - but the decent protein and globulin levels mean that the PPs can't be too high.

My kappa:lambda free light chain ratio (sorry, this is a bit technical) is high, and I'm having trouble finding online resources to help understand that. Another question for Dr.Ch. He says he likes questions... We also need to get an answer out of him as to what stage I'm at. There are two staging systems - according to the old-fashioned one I reckon I'm in a grey area between 1 and 2 (out of 3), and the new one requires knowing my beta2 immunoglobulin level, and last time he said he hadn't got that through from Broomfield yet.

Again, no early reaction to the Velcade injection (or the B12) so all looking good. And the walking is 95% of the way back to its best - almost made it up the stairs without holding on to anythng. But not quite. That's a target for tomorrow.

23/10/19

Chemo today at 14:00 - my second Velcade injection, and of course the pills carry on as normal. Started another two days of Dex this morning, plus thalidomide daily and the "supportive" antibiotics, anti-viral, anti-gout, etc.. Here's today's after-breakfast collection:

Expecting to get FBC results from yesterday's blood samples - both red and white cell numbers may be down because of the chemo.

At 16:20, the GP surgery for my regular 3-monthly B12 injection. Tomorrow, the dentist to begin a crown replacement. It's all go...

22/10/19

Not much to write about these last few days. Mainly I've been taking it easy trying to undo the damage caused by that over-enthusiastic walk in Thorndon Country Park. I'm on the way back to where I was, but still lurching to the left too much and can't do the stairs as well as I could a few days ago.
Later today, off to Springfield for more bloods, and Week 2 of chemo starts on Wednesday with another Velcade injection. Should also find out how the blood counts are doing, and whether I need yet more pills to boost red and/or white cell production. Probably too soon for that yet.