Tuesday, 20 July 2010

Ready, steady, go!

OK, so we've been today to see the big Prof and the news is that despite my hb levels having gone up slightly, that he would still recommend treatment. :-( (Don't think you can do proper sad faces on here!)

So, it looks like after a long deserved break, drinking G&T, we will back to an MRI, a bone marrow biopsy and probably the start of the road of chemo.

I probably ought to clarify what it all looks like for those of you who don't know. If it goes as planned, it will start with low dose chemo (CTD) in August/September. This will last for about 3 months, after which they will harvest some of my stem cells. None of this sounds like it will be too intrusive in the grand scheme of things, and I think I should be able to carry on life as normal (or pretty much so, bar the jekyll and hyde personality I might take on....oooh lucky Nick!!! He thinks I have that already!!)

Once we get through that, they freeze the stem cells until I am ready for a transplant... the Prof suggests sort of New year time for that one and then I get high dose chemo for 4 hours (and yes, this will lead to hair loss etc etc) before having my stem cells reinjected to me. It sounds like I'll then be in hospital for 2-3 weeks sort of in isolation, before they send me home to recouperate. And that will hopefully only take a couple of weeks but could take up to 3 months.

Funnily enough I feel pretty ok about it all. I have found the last week really hard since I saw my levels go up again, as I think I find the not knowing really hard....control freak that I am. At least now, I know what is going to happen, in what timescales, and what we need to watch out for. All good in a warped sort of way.

So now we need to plan as more than anything in the world, I want to keep things as normal as possible for the kiddies. I am so scared for poor Sam especially as he will be starting school as all this kicks off and the last thing I want is for him to have a tough time with it. But hopefully we can make it seem normal.

I'm also thinking about returning to work....strange I know but there is method to my madness and I am being very upfront with them. I currently work on a sort of contract basis where I only get paid for what I work so I get no sick pay etc. If I can go back to work, it would mean that I would be protected and if I was really ill, I could take the time off with no financial pressures. I don't know if they'll really go for it (not many companies would!) but if they do, they'd know that they'd get me back at the end of it for longer hours than I'm currently working. While the timing isn't great and I could do with not having to work longer for another 6 -9 months, it would be fantastic if we had that stability.

So much to think about and perhaps now isn't the time for me to waffle on (hmmm, have had a couple of G&T's already!)......catch up soon


  1. Hi Deb,

    I'm currently going through the same treatment as yourself, but much further along. I should be having my engraftment in the next few weeks. I had the CDT and the bone marrow extracted and will be having my little holiday in hospital soon.

    For me the CTD went realtively ok. I had a few side effects to some of the other drugs that took a while to sort out, but in general ok.

    I did try to stay at work at the beginning, but found it too much for me. Everyone is different though and I would encourage you to at try as you are doing. On the Dex days and the chemo day I was very tired and couldn't really concentrate and found that it just caused me more stress and worry, so I decided to go on the sick.

    Other days I felt great (especially once the dex kicked in). The treatment so far has been really successful for me so far and the para protein reached a plateau as expected.

    If you want to know any of nitty gritty details that you feel you don't want to discuss with your doctor, then let me know. I'm quite open and always willing to discuss my treatment.

    Take care.


  2. Hi Sean,
    thanks for the post...it's great to hear about it from someone who's going through it at the moment. I've been away for a couple of weeks so sorry for the delay!!!
    I really hope that all goes well with your SCT....keep me posted! (Mine might be waiting a little longer - I'll put a new post up shortly to explain!)


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