Friday saw our catch up meeting with the Guy’s consultant, to confirm the official end of the tremi trial and that we didn’t want to be involved in any follow up scans etc. After the meeting we managed to go out for lunch, which was the first time since early January to be out together in a social sense. The rest of our year has been dominated by hospitals and hospices.
Although better than a couple of week ago, there are still long periods of fatigue and pain, which without the morphine is harder to control. However, the opiods have such a devastating effect on his will to live that they are very much a drug of last resort.
Whilst he has gained back 2kgs of weight , the overall loss means all sorts of bumps and lumps are now visible. They aren’t all meso , but some of them probably are which is both scary and yet another unwelcome new element. The full focus is now on whether a suitable trial is out there, ideally involving Keytruda or equivalent. There is nothing coming up at Guy’s or UCLH, so we have now been referred to the Marsden. Fingers crossed something becomes available soon ( we may even bump in to Ray and Mavis in the waiting room).
Not doing at all well today, still no sign of any real improvement in the pneumonia, will be mid way through the course by tomorrow, so had expected a bit more effect by now. On the other hand it hasn’t got any worse, although still has the crackly space dust effect – which is really disconcerting, listening to someone’s lungs crackle
He slept really badly last night, not through coughing, just generally , took ages to get to sleep , then awake at 3.30am, then took a couple of hours to get back to sleep , then very fitful through to around 8.00 am.
I think it is really starting to wear him down, I know he is now thinking maybe it isn’t an infection, maybe it is the meso. Or maybe it is an infection that just won’t respond to treatment and I’ll go downhill really quickly anyway, or maybe its viral and it will just slowly waste me away…. Can tell this is now getting frightening, so no wonder he finds it difficult to sleep.
If no improvement by the weekend, will go and see the GP, although not too sure what they can do other than change the antibiotic. At the moment he isn’t that breathless, talking really brings on a coughing fit though.
Not feeling as though I am much use at the moment other than offering nightly prayers that the infection starts to show some signs of improvement, even something very small would be a help – a really good result would be if the crackles were to stop !! because that is scary.
Image via Wikipedia
The good news is there is a definite improvement, as the cold symptoms start to retreat . the aching muscles, the snotty nose and the exhaustion, as well as the slight temperature, up to 37.5 have all started to disappear. along with the nose bleeds- so sometimes there are other bugs out to get you not just the meso. His cough is still present , but it sounds different to the usual one
We even managed to get to the theatre yesterday, to see “An Inspector Calls” , its a great production so glad we got to see it. We have also just discovered our box set of the West Wing, so are working through series one- never watched this originally until series three, so allnew to me as well
So still here. having a better day , hopefully the rest of the week will go well.