Tuesday 14 June was a beautiful day, sun shining, 20 degrees, energy and eagerness abounding, so my friend and I took to our bikes and cycled to Elvaston Castle, where we found a secret (well, it felt like a secret) walled garden with climbing roses, other formally laid out plants with name tags and a lot of benches, so we sat on one of them and basked in the sunshine. It was delightful! We cycled 20.5 miles in total, which I feel very proud about (cycle computer fixed now). I then went off to meet some other friends in Derby for an early dinner. All in all an excellent day!
While out cycling, one of the nurses, Jenny called me in response to my phone message the previous day. The nurses are very good at replying to phone calls. At the time, I was on a road with a hedge but no pavement on my side, so after a few close encounters with cars and with a large lorry looming towards me, I scooted swiftly over to the narrow pavement on the other side to take the call.
Jenny responded well to my main questions about pain relief, but said that neither of the doctors were available to speak to me about the transplant question. They had not been able to view the video clip I’d sent them, due to the security settings on the hospital network. She told me that one of them would be able to come and speak to me tomorrow around midday, after ward round. However, by that time I expected to be fully implanted with Hickman line… kinda fait accompli at that point I thought and a little late in the day if I did wish to pull out of the transplant process, although I still could. But I didn’t feel I had any choice about it, other than to camp out at the hospital until one of them was available, which I wasn’t prepared to do.
She did say that if, as some people do, I chose not to have the transplant, the treatment would usually be to stop medication and have regular check-ups until the disease shows itself again. This is what usually happens after the transplant anyway, but it seems the general consensus (apart maybe from Dr Berenson) is that the remission is longer following a transplant.
On this trial I may or may not have medication following the transplant… There’s another randomised option after the transplant whereby I will either have no medication or continue to take Revlimid, as they want to see if Revlimid improves overall survival and progression-free survival compared to having no maintenance medication.
Jenny also said that the licensing of treatment is different in the States and that might make a difference although we didn’t pursue that line, so I’m not sure exactly what she meant by that.
It did make me think though… most UK patients who are young and fit enough do have a transplant. It is considered the gold standard treatment in the UK. And I recently made contact with a friend’s mother who is now in her 10th year post-transplant and at 75, still working part-time and very active with creative activities such as stone masonry and stained glass windows amongst other things. She certainly sounded very much alive and kicking!
So, even though I’m annoyed that neither of my consultants could find time to email or call me prior to the forthcoming procedures, given the importance of my question… I’ve made up my mind to go through with the transplant.
We never know when we make a choice, what the outcome will definitely be. There is always a risk that the other option might be better, but we have to make a risk assessment and take what seems to be the best option. Even if we’re told of a 90% positive outcome, who’s to say we’re not going to be in the 10% of bad outcome?