Thursday, 18 November 2010

Myeloma 11 and the story goes on!

Today has been a strange day. Yes, I was due to start chemo today (CTD), but surprise, surprise, it hasn’t gone to plan….nothing seems to with me! Got to the hospital, they took my blood, gave me zometa ( a biphosphonate) and I waited to see the Professor to have him give the go ahead for CTD.

I went in, he agreed it was time to start treatment......and then told me I had the choice of CTD or the Myeloma 11 trial! Arrrgghhhh! It was all meant to be so simple. I didn't even know the trial was on offer. And then there he was telling me I was the perfect candidate for it!

It offers the opportunity of having revlamid instead of thalidomide in the early stages (if I’m the 50% that gets that) and revlamid as a maintenance drug (as opposed to no maintenance drug). It sounds like in a french trial it did really well so we decided to go with it but it means I don’t start now till Tuesday as they couldn’t do all the trial prelims! I've attached a link for anyone who wants to know more about what will happen.

So, off I went for more bloods - they had to check I wasn't pregnant (good god no!), and all sorts of other things, and then I had to have another bone marrow biopsy. I wasn't too worried about it as the last one hadn't felt too bad....I mean it hurt, but it wasn't as bad as the first. Hard to say exactly how it feels. Anyway, I have to admit that I burst into tears at the end….I think the whole stress of being strong for the last 2 weeks came out when they did the last grope around!! I felt like a bt of a failure for being so soppy! But then again, I do feel I’ve held it together really well over the last 2 weeks.

So overall we're pretty positive that it's the right decision to hold fire for a few more days. But it is also quite tough psychologically. In fact the last year and a half have been harder psychologically than anything else. But we're about to get going and hopefully there'll be no regrets.

The hardest is most definitely with the kids. We told them two weeks ago and they took it in a fairly matter of fact way. After all, at 4 and 6, they're too young to really get the whole thing. But interestingly, sam especially has mentioned it a couple of times, and seems particularly concerned about when I'm in hospital. At the time we told them, we wanted to tell them about all of it so they didn't see it as the medicine not working when I go in for the SCT and am in hospital for 3 weeks. But now, he has mentioned a couple of times about it.  I could do this whole thing if it wasn't for the kids....I hate the idea of it affecting them and them changing because of it all. They're so little and really don't deserve to have to see their life become harder. Hopefully as parents we can keep it as normal as possible for them....that's our aim and hopefully we'll do it!

So tomorrow is another day, and hopefully we can make the most of a weekend as a family of four, treatment free :-) Has to be a good thing! Nick has even promised to do another roast like he did last Sunday......yummmmmmm!

1 comment:

  1. I was extremely disappointed when my SCT got put back a week. Obviously you psyche yourself up for something you want but don't want and then... nothing! Have a good roast - I'd have a long wait for Bernard to make me one! ;D


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