Got my stem cells back around lunchtime yesterday.
Here’s what they look like. Two bags like that went in fairly quickly, having just been defrosted in a water bath. In fact it was at lunchtime, because I was eating macaroni cheese at the time. As I’ve previously mentioned, the return of the stem cells is famous for the tinned sweetcorn smell that comes with them. In fact it was only a faint taste for me, which was soon washed away by further mouthfuls of macaroni cheese.
I’m told though that I stank of tinned sweetcorn for the rest of the day, though I couldn’t tell at all. Other than that it was a pretty normal day. Come evening though I was a bit wired on the steroid (“methylpred”) that I’d been given and it turned in to a rubbish night, just not being able to fall asleep.
So a bit tired today, but I think the main steroid boost is over. And generally just a quiet day in my room. Had a brief go on the exercise bike that’s now been installed in my room, which was OK for a while, though they’re never anything like as satisfying as riding a real bike.
Hopefully I should be able to sleep a bit better tonight. Other than feeling a little post-steroid tired, I still feel pretty good.
Also just wanted to say thank you for all the comments, emails and text messages. It’s great to know that people are following my progress so closely. The blog can be a little one-way at times, which of course is great for diseminating information about my treatment and progress, but I’m sometimes not sure who’s read what.
Apologies however if I’m a little slow in responding – it’s amazing how much effort it can seem at times…
Ooof. OK, so I admit it, I’m probably not going to shake off the high dose melphalan as easily as I’ve dealt with my previous chemo drugs. The night afterwards I found it difficult to get comfortable in bed – too hot, too cold, wrong pillow position, funny thoughts, need the bathroom (again)…
And I’m not really sure what happened to yesterday. Had very little energy all day and hardly moved from the bed. It was strange, because I felt OK, but summoning the energy to do the smallest things was a real battle. By evening it got a little better – a shower perked me up – but I managed very little of the food. A hot chocolate from one of the nurses was a nice boost.
Slept better last night. Calmer but still only in bursts. Managed some cereal for breakfast and generally have more energy today.
In preparation for getting my stem cells I’m now hooked up to some methylprednisolone (a steroid), which should give me a bit of a boost over the next couple of days (before my blood counts really start dropping and the worst phase comes 😦 ). Stem cells due shortly…
So I’ve officially been nuked. I don’t feel very nuked, but that’ll come I’m told. For now I’m fortunate in that I haven’t had any adverse reaction to the melphalan today. Some nausea might have been expected (and they always warn you about all possible effects I’ve learnt), but I seem to have quite a strong stomach in general and I’ve not had any problems thus far with the lower dose chemo drugs that I’ve been given. Although whilst I’ve not taken many anti-emetics before (because they tend to constipate me), I thought I wouldn’t turn them down this time 😉
Wondering what high dose chemo looks like? Well here it is: Yup, they keep it covered up. The evil gloop in the infusion bag is so evil that even to cast eyes upon it is said to turn a mortal’s stomach to stone.
OK, so I made that up. Melphalan has a very short half-life (drug stability, it’s not radioactive) and direct light shortens it even further. So once they hang up the bag (which actually just looks like any other colourless drip bag liquid) they pop the cover on. The half litre goes in over the course of about half an hour, over which time some of it has already degraded (and of course there’s the time between it being made in the pharmacy and actually starting going into me).
So otherwise it’s been a fairly unremarkable day. Fortunately I have a good internet connection here (it’s almost a human right, no?) so I can read, watch, blog and chat to people. Thanks to all who have been in contact – I may have plenty of entertainments available but at the end of the day being stuck in an isolation room could get pretty dull. I greatly appreciate your kind comments and support.
And talking of the end of the day, this is how today ended after a quite a damp and rainy day outside (hey, I was snug and warm in here). Not a bad way for the day to wrap up.
Looks like this time won’t be the false start that the last admission was. Arrived yesterday afternoon and got myself installed in my room. Very similar to the room last time (just a few doors down), though very slightly bigger which is useful – bear in mind that I don’t go anywhere now without rolling a drip stand with me that has a good spread of wheels that are just wonderful at getting snagged on the feet of the bed, power cables, door frames…
Have been hooked up to hydration since I arrived, so I’m nicely hydrated and nipping to the bathroom every 15 minutes. That’s a prerequisite for having the melphalan (the high dose chemo lined up for me today) as they want to be sure that my kidneys will efficiently flush it out of me afterwards.
Also have been kitted out with some very fetching anti-thrombosis socks, since I’m not going to be moving much for the next few weeks. They are, you will surely agree, haute couture par excellence. Unconvinced? Trust me, they’re what everyone(*) in Paris is going to be wearing this summer.
So am now just waiting for my melphalan, which apparently is just being made up in the pharmacy, and should be here on the ward very shortly. Lock and load – no going back once that’s in…
(*) Everyone here that is.
After one aborted attempt to begin my extended stay at Southampton General, I’m rebooked to go back in on Monday (27th May). With hindsight it was a good idea to put things on hold, as the tummy bug turned out to be quite full-on and I’m glad I experienced that separately from the planned chemo…
I was back at work this week, which made the brief hospital experience seem like a strange memory, with the one exception that I now have a couple of narrow tubes emerging from my chest (my central line) to remind me of my visit. The central line has been fine – I barely notice it any more, though showering is a small faff as I’ve been told to wrap the ends of the tubes up in plastic to try to keep the water off.
So another “last” weekend to enjoy. Off to Stonehenge today with the in-laws… 🙂
So get this: I’m home. No, advances in medical technology haven’t found a way to compress 4 weeks of treatment and recovery into 24 hours. It’s a bit more mundane than that: I got a tummy bug. On the admission day on Tuesday I was fine, but Andrea (wife) called to say that she couldn’t visit as planned as she was stuck in the bathroom… I thought I might have escaped it, but Wednesday proved me quite, ahem, spectacularly wrong. After some discussion amongst the medical staff it was decided to send me home to recover, probably to be re-admitted after the weekend.
I was scheduled to have the melphalan yesterday, before which you are given large quantities of fluids, so a small advantage was that at least I wasn’t likely to become dehydrated from the tummy bug!
I’ve mainly slept since I got home, and this morning I feel better though very drained. Quite odd to be back here having expected not to see home again for a month…