Well, I’m a week off it being one year since my Stem Cell Transplant. And I had my 12 month check up today, along with a bone marrow biopsy (yuck!) and the results of an MRI I had had last week. And breathe!
So far, so good. Surprisingly for me. I had my MRI on Friday and they had pretty much said to me not to worry if they needed to inject a dye as that normally happened when they couldn’t see anything. So guess what I thought, when they didn’t inject the dye…..oh yes, they’d obviously seen a huge lesion that would show my myeloma was back. Totally not true (although I didn’t know that at the time), and so I went down to a lovely weekend with my sisters in Dartmouth, trying not to get wound up about my concerns that there was something going on that I didn’t want to hear about! And I think I did fairly well with it all, although they may say differently!!
So then today it was my twelve month check up with my lovely, lovely consultant. I felt bad asking to see her as I didn’t really have much to say, but again, I think I had been worried that if anything bad had come up, that I didn’t want to be seen by ‘Joe Bloggs’. She told me that my MRI was clear (apart from aged degeneration….could have killed her for telling me in front of Nick – no chance of keeping it quiet now. Hence why I’m telling you before he laughs his head off telling you all!). And after we’d seen her, it was on for the lovely bone marrow biopsy. Now I used to absolutely dread these, and I was definitely getting a bit tetchy before I went in, but a little bit of diazepam, lots of gas and air, and I was one very happy relaxed woman (who seemed to hear lots of little voices and noises that didn’t exist!! lol!). So after years of them being a hideous experience, I can honestly say that whilst there is always a bit of pain, they are nowhere near as bad as they used to be…..next time, I would even do it on my own!!!
Now, I have to wait a couple of weeks for the results of the biopsy. But no-one expects that to come back negatively so I’m sort of ok. Apart from that was the case first time round and it was the biopsy that changed me from being ‘low risk of myeloma’ to being a myeloma ‘smoulderor’. And within 12 months of that I had started treatment. But that can go to the back of my mind until the next bottle of wine!
I’m not a total worrier…honest. But I can’t explain very well how this all builds up in your head. I am fairly rationale most of the time. I have to be with the lovely Nick as a husband – he is an amazing leveller (and I promise that is meant in a truly positive way). But until I get those results back in a fortnights time, it will sit somewhere at the back of my mind, popping up when I least expect it to, and when I least want it to. I saw that tonight. I spent an hour in tears tonight. I suppose it has been a long day, some of which I just haven’t known what to expect. And the kids were worried about me going to hospital (although they didn’t know it was my 12 month check up, or that I was having a biopsy…it was just the normal monthly check for them). But Rebecca had been sad last night and explained how much she didn’t like me going, or being poorly all the time. I try to reassure. I hope it works. Our children don’t deserve this…they cope so well and I am so very proud of them. I hope I don’t screw them up.
I think that tonight, yet again, it has dawned on me, how this is a bit of a life sentence. I don’t mean that to sound melodramatic. But I know it does. And some of you may think I’m being over the top. To be honest I don’t care. It is tough living with a cancer that could pop back at any time. And it could do. Each month I go back to the Marsden, all smiles with the nurses, taking on their compliments about how my new short hair suits me…….but each month there is that dread of what might happen. That they might just say to me that my levels have stopped being stable and have risen. That things might not look so good. And lots of you will say that I should live for the moment, that I can’t think the worst, that I should live every day in a positive way. And you’re absolutely right…..but just try doing that day in, day out. It just doesn’t always work out like that. It can be a hard slog at times.
Perhaps a few glasses of wine tonight have made me a bit franker than I’ve been for a while. That, and the fact it has been a long tough day. I promise I am fine. Just thinking. But fine. So don’t worry about me, don’t think you have to watch out for me, but perhaps be aware that I work really hard to put on a brave front when I’m feeling a little nervous or a little sad. And sometimes I don’t! The next couple of weeks will be tough, but for us as a family that is an ongoing battle. And then we will smile on
What I have realised yet again tonight, is the support that Nick and I have. And we are so grateful to that. Your comments on my Facebook page, when not on here, are very much appreciated and we are so lucky to have so many lovely friends to help keep us going. I know we’re not always the most sociable guys around these days, but you stick by us, and that means a lot to us. Thank you. We love our friends to pieces xxxx