Still in hospital

Until Friday morning at least. Got to finish the course of intravenous antibiotic (Tazoscin? ) here before they let me out.

Another notch on the reality stick

Felt a bit low last night. went to bed and woke up two or three hours later shivering cold. Thought it was just a cold night so put a dressing gown on top of the duvet and a pair of socks on my feet and that seemed to do the job. Went back to sleep and woke up at a sensible time but feeling bad and tired out. Sure very sensibly got the digital ear thermometer out and i was 38.5 which is high enough to be a problem.  So we got on the phone to the Oncology Centre, had some bloods and a chest x-ray done, and the outcome is that I'm being admitted for a couple of nights while they work out what antibiotics I need and fill me full of them. Obviously I've picked up an infection of some sort.
It's a valuable reminder that although things have been going well so far I am in a more vulnerable state than normal and need to be more thorough monitoring myself. If I'd been a bit quicker on the uptake I might have spotted the raised temperature a few hours earlier, although I'm not sure that would have made much practical difference in the middle of the night. 

Live and learn, I suppose. Be more careful!

Feeling sorry for Sue who has lost a whole day dealing with this, and most of tomorrow as well. In some ways it messes her life up more than mine.

28/10/19

We saw Dr.Ch again today to monitor progress. He seems very happy with how things are going. We now have an official Stage under the Revised International Staging System: I'm Stage One. Which is good. Better then Stage Two, and etc.. He also thinks it likely that I'll need just four rather than six cycles of chemo before the SCT (stem cell transplant), which puts the date for that into early March. That would mean most of the rest of March in hospital, followed by April, May, and into June for the recovery period at home. If all goes well, of course! And - assuming the insurers cooperate - it'll be at the London Clinic in Marylebone, where they have some of the top people for these things.
Next thing is another weekly shot of Velcade on Wednesday (which means another two days of Dex with the inevitable sleep-disturbed nights again), and a week after that I have another Velcade and a Zometa infusion as well. Plus the usual bloods at every opportunity.
Also on Wednesday (afternoon), just as a reminder that other things go on as well, I have to take my hearing aids into Specsavers for an update.

Blockage

It must be said in the interests of a complete record: today was the most constipated morning of my life so far. I shall have to upgrade from Sennakot and an evening shot of prune juice to something rather more potent, because I don't want to go through that again...
I'm not going to wish for the alternative side-effect of diarrhoea, but just a little balance between the two would be welcome.

Anyhow, having (eventually) got that out of the way we went to the local Sorting Office to collect a couple of packages of hoodies, t-shirts, etc. from Myeloma UK and went for a very pleasant walk'n'roll in Hylands Park. Lovely late autumn day in the sun, lots of people out with their dogs, and a decent coffee and cake in the Stables courtyard cafe. All left me tired enough for a good doze through the afternoon - stamina is certainly not what it was.

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...