Ok so after my last post, I have had my results back and my paraprotein has gone up again. Not fast enough to worry massively but enough that my consultant wants me to start treatment in July.
So we’re back in next week to talk it all through and set dates etc and then it looks like I’ll be starting on the 29th July. Luckily he’s prepared to be flexible as we’re meant to be doing some work on the house. I won’t be able to get it finished and will still have to decorate on treatment, but hopefully all the dirty messy work will be finished before I start.
Not sure I’ve quite got my priorities right…someone said to me the other day, “are you delaying to have some quality time with the kids?”……oops! Well hopefully we can do both.
I have to say that whilst I can’t bear the thought of being ill again, and going through all the awfulness that we suffered in 2010/11, I am pleased that it is a definite now…and that we can plan now. I’m a bit of a control freak with things like that. I need to know when I can work, when I’ll need help with the kids, when I’ll need dog walkers! I hate asking for help but I’m better when it’s all planned.
So the plan now is to keep things simple. We won’t be booking in to see people until we know how the treatment affects me. And if we have booked things, please bear with us if we have to cancel. Sometimes it can be emotionally difficult as well as physically difficult. And if that’s the case, we need to be able to do that…and for me, I need to know it won’t be held against me.
It’s going to be a tough year or so ahead of us. 6 months of treatment (twice a week at hospital), 3 weeks in hospital and then 6 months of recuperation. But we’ve done it once and we’ll do it again. And hopefully it’ll be as successful as it was last time.
We’ve told the children. They’re being amazing at the moment. I hope so much that will continue. People who have followed my blog will know we have always sworn not to lie to them. That makes it really hard at times. I don’t always know whether it’s right. Rebecca asked if I could die from my treatment. How do you tell a 14 year old that there is always a slim chance, without scaring the living daylights out of her. But I couldn’t say it wouldn’t happen as even we don’t know that. You hear of the ‘worst case’ scenarios and I’d hate them to ever think that we didn’t give them the opportunity to talk about the reality. So I talked more in terms of any treatment having tiny chances of dying but that mine had been really successful last time. She seemed to take that fine. I hope!
I’m sharing this one post on Facebook (and excluding her from seeing it) so that people know that my treatment is starting again. If you want to follow my new journey without wanting to ask questions your best bet is to sign up and follow this blog. Otherwise, feel free to call, text or email – I’m always open to a chat!