The last couple of days has given me a bit of a reality check, but also a realisation that I really do need to make sure that Nick, I and the kids do everything we want to do each week, month and year. No more procrastination. And it would be helpful to win the lottery!!!
But in all seriousness, it has been a bit of an eye-opener. Yesterday I spoke to an online friend who lives relatively locally and whose husband had myeloma. I met her when she brought round tonnes of things for our tabletop sale last year and we have followed each other at the myeloma UK site since. But about 2 months ago, her husband died, fairly quickly even if not unexpectedly. I found it strange how I managed to talk to her without getting emotional on my side. I think she felt weird at first talking to me as she was worried it might sadden me, but instead I found myself just wanting to be able to help her as someone who knows where she is coming from. I hope that I can continue to support her through what must be so hard for her – she has lost her soulmate and I know how I would feel if I lost Nick……..
One of the things she talked about was how she and her husband had talked about everything. Nick and I do that for most things, but still have that BIG conversation to have. The time never seems right, and even before I went into hospital, neither of us could bring ourselves to do it. I tried to write him THE letter, but couldn’t even bring myself to finish that…it was just so hard to do. But talking to this lady has made me realise that we need to do it – to ensure that Nick doesn’t have wishes that he had done it more than anything.
Another of my online friends has had sad news too. She had already had one transplant and further to a relapse, was hoping to have a sibling transplant and had got two matches for this. But today she found out that the risk had risen from the normal mortality rate of around 25%, to 50%. So for her, also with two young children, it is now a no go. She desperately needs a cure to be found for this damned disease. As do we all. She is about to do a Glitz and Glamour Ball in October to raise money. Ironically I had also decided to do this here in High Wycombe and it has made me all the more determined to put my worries about it to one side and to do it next October….more to follow as and when I have my plan in place. But in the meantime it has just made me feel for her and her family, and more selfishly, hope desperately for a long remission for me from my transplant.
Moving on from sad news, I went to the Pain Clinic today to discuss my neuropathy. There isn’t an awful lot to say on it really. They have changed my drugs back to one that I was given by accident pre-transplant (pregablin for anyone who is interested!!). At that point I was mistakenly given tramadol and morphine at the same time and found that when I took the morphine the pain disappeared….apparently you aren’t meant to have tramadol and morphine together as it is like a mini overdose!!! No wonder I was pain free!! (Although slightly concerning that they allowed me to be on these in the first place!) Anyway, they are hoping that the pregablin and morphine might work the same way so I have a week on low dose, followed by a higher dose, and we’ll see how it goes.
If it doesn’t work, apparently they have other options and eventually might support trying accupuncture etc. They also have a trial for a new drug that I might be able to try (if it doesn’t interfere with my myeloma treatment) but that is in very early stages and I could get the placebo rather than the real thing….can’t imagine why I would choose a treatment option where I could end up on no drugs at all and so it really would be a last resort.
As to how long the pain could last…..well it could go at any time, but it could also last for up to 2 years. I got the feeling that if I still had it then, that it was unlikely to ever go! Arrgghh..here’s hoping that’s not the case.
Anyway, a day of no midday sleeps today, so I’d better go and get myself to bed.