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Colleen Displaced

one ordinary woman -vs- Multiple Sclerosis

HSCT - still taking up (too much?) space in my head

August 20, 2016

Hi there, welcome back!

Before I give you an update on where things are at I'm going to cheat a little here, and copy/paste part of an earlier post, because this really should have its own space.  HSCT, it's huge.  So here is my earlier little piece, just to keep you up to speed ... (with a little editing)

“… I have a secret.  Shhhh (I'm actually looking left and right it's that secret).

Ready?  Here it is ...

I'm seriously thinking of having HSCT.  It's all the rage with us MS types.  HSCT stands for Hematopoietic Stem Cell Transplantation.  It's a treatment that involves chemotherapy, and while it’s been approved to treat other serious medical conditions all over the world, here in Australia it isn't approved for the treatment of Multiple Sclerosis.  Despite the fact that it seems to work, by either stopping progression of the disease or totally obliterating it.  A lot of people with MS have got their life back after having HSCT.  A lot have had the progress of their disease stopped.  And some, in the later disease stage, have seen no improvement.  I do still walk, and think that now's my time.  Time to stop this rotten disease, or maybe even get rid of it.

There is a trial for HSCT under way in Sydney, but the criteria includes that you must have active lesions showing on MRI.  It all gets a bit technical, and I won't waffle on about all that.  I'll just say that I don’t meet that criteria, so I haven't been able to get into that trial.  I am going to try again, there is always a chance, but I will be incredibly lucky if I get a ‘yes’.  So right now it looks more likely that I won’t make it.  Which means if I want to have the treatment I will have to head overseas.  I've pretty much decided on Russia.  Those guys are super smart over there.  They know their stuff. And after lots of researching they seem to have a very high success rate.  So that's probably where I'll head, once I make the final leap.  It's not an easy decision.  HSCT involves chemotherapy, and a quite long recovery period.  I'd lose my hair, and feel awfully sick.  Maybe even worse.  Am I brave enough?  Should I burden my husband with more than he already has to deal with?  I think that's the major stumbling block. My husband shouldn't be my carer.  That's an awful thing to do to someone who loves you.  Of course I could be totally ok when I get back, lots are, they pump you up with steroids for a month after your return home.  but I don't know for sure that I'll be ok after the transplant.  And will a doctor here take care of me when I get back home if I leave the country to have HSCT?  Just one of many questions I still need the answer to.  I've prepared an email to send to the hospital in Russia, haven't sent it yet.  But I'm all ready.  Tinkering on the brink I guess you'd say.  It's all doing my head in right now, but I'll keep you posted.“

And that was it.

There are lots of blogs and videos online about people who have had HSCT, and as someone who wants to know more about it I thought I’d start sharing my experience of finding out more, and all the things I’ve been struggling with.

But first I should tell you that I’ve made up my mind.  I am going to do everything I can to access HSCT.  I’m at THAT stage of the whole (and frankly terrifying) journey. 

Now let me make one thing clear.  If you are just beginning to look into HSCT, you might not have realised yet, not fully realised, that it isn’t just about you.  Don’t get me wrong, this is an enormous decision to make.  It sure is about YOU.  But if you have family, a spouse, children, parents, uncles, aunts, nieces and nephews – and if you have friends – which I know sounds dopey, of course a lot of us have those people in our life – BUT this decision has to include those people too.  All of your nearest and dearest care about you so you have to share this one, and share it in good time, let them have the space to digest it too.  When (or if) you get to the point of ‘yes I will do this, yes I CAN do this’, if you haven’t already let your family and friends know what you’re thinking you need to get busy doing just that.

Trust me.  I was keeping it to myself.  Silly me.  That one part of the whole process, and the fact that I’d been keeping it to myself, spending hours researching and trying to make up my mind – yet not having shared the true purpose of my journey - was causing me even more anxiety.  I didn’t need that as well, you don’t need that either.

Number 1 on my list was my husband, of course.   I HAD to let him know.  Of course I’d told him about the treatment, what it was, and had shown him videos of people who’d been through it – some incredible success stories, some who’d improved but not totally recovered, some who’d seen no difference at all – but I hadn’t said that I was going to do it.  And I was firm in my decision.  I wasn’t exactly going to be giving anyone any options here.  I was doing it, I wasn’t giving anyone the chance to change my mind.

And finally, last night, I took that leap.  And it’s fine.  We talked about all the pros and cons. He agrees that it’s my decision.  I know that it is a huge burden for him too.  He’s the one who’ll be seeing me through it, the one at my side.  He knows that I ‘get’ that.  And he knows that I know how hard it will be on him too.  It’s a huge chance I’ll be taking, it will be awful to go through. Anything could happen. I’ll be the one losing my hair and being terribly sick, and maybe having serious complications.    It could also turn my husband's world upside down.  But we’ll be in it together.  And while I feel guilty, while I fear the worst, while it tears me apart to put my husband in this position I feel better knowing that we have started the journey, and rolled up with all that I feel an awful responsibility, I feel greedy and selfish.  Now I have to be courageous, take the risk for us all, and make it happen.  If you pray, please be kind and perhaps add us to your prayers.

All for now, be good to yourself

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