A very quick entry until I have time to write in detail as I have lots to do. I am basically pasting in some adapted info that I have sent out to the family. However, I will put in another entry with more details of interest to myeloma patients when I can and I hope to do regular entries for some of the time I am in.
I had my second PAD cycle – found it hard going and hair fell out, though glad now as it is all nice and shaved for the transplant. I am trying to get off the steroids as quickly as I can but struggling with withdrawal. I am very tired from weeks of hardly any sleep, but I should catch up slowly now. Terrible digestion with constipation, wind, bloating and acid so going to try and sort that as much as possible before go in.
The Leicester unit looks very good – did not see a room except in a picture as occupied. But there are a small number of rooms occupied with dedicated nurses. Free TV, will need dongle, Wii Fit, fridge, storage, ensuite etc. Separate kitchen for times I am allowed out (not all time). The consultants we have seen are brilliant and the nurses are lovely and everything went very smoothly at the appt in terms of who we saw, when etc.
We had a shock in that they have booked us in much earlier than expected. This is because I have just had the extra two chemo cycles and they want to ‘do me’ before the effects go away. Gives me a better chance at remission. I will go on on the 10th April. They prepare me for a week with various chemos and other things. Then I have the donor cells on the 17th. Then it’s basically – gets horrid then gets better over 3 to 6 weeks. Then basically once a week for an appt and also almost certainly some time back in hospital for infections etc.
I have to put weight on as much as possible before I go in! Not too much exercise (lol – can’t burn too many calories). I have seen a dietician and have lots of instructions for post transplant re what I can and can’t have.
Everything is dependent on various tests I have to have beforehand, which will be done at Northampton and also the full medical on the donor who is a full match – 10 out of 10! Which does help with the graft versus host disease – should be less. I was amazed as I thought only siblings had that level of match. But things would have to start again if there are problems with either of us or if I get ill. So very important that I am not exposed to illness, though consultant did say that I didn’t need to just stay at home – just take care. I did have a short medical and everything was fine. had a chest x-ray and ECG. I have an appt for other heart tests and will have usual lung function test (blowing into machine). Also another bone marrow. Probably 24 hour urine though that wasn’t mentioned. Did a urine sample there. Had 11 vials of blood taken (though thin ones) so definitely win that statistic for ever lol!
So – I will be off to hospital soon and lots to do as kitchen fitters come 7th April and much will fall on Bob. Still things to decide on, order etc for kitchen!!