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Colleen Displaced

one ordinary woman -vs- Multiple Sclerosis

The biggest update EVER

November 6, 2016

Ahem.  Hello again.  You won't believe what I've done.  I've been busy.  Travelling around, organising a humungous first-ever family holiday get-together next year and ... wait for it ... drum roll ... arranging to be on the waiting list for a Hematopeotic Stem Cell Transplant, in Russia.  HSCT, you know?  Feel like I might just be crazy.  But I honestly just don't know any more.  All I really know is that I have MS and I don't want it.  And HSCT is the only thing that's been shown to stop MS progressing, and in some instances it has moved people from a wheelchair to walking, given people their life back.  Anyway I've done tons of research on HSCT, lots of checking out the different facilities providing it, the different countries, all that stuff.  And decided on Russia.  *Update: Turns out I'm looking at 2018 for Russia.  

Next choice is Singapore, dont know if they'd accept me, but do know their waiting list is much shorter.  Mainly because they cost a lot more.  If I get worried about the waiting I plan to attempt treatment in Singapore, and I may not be accepted there, so if I get to that point we will just have to see.  Russia is my first choice, so I am hopeful of a shorter wait, people do cancel!

I have made up my mind to go ahead, absolutely.  It's just such a huge thing to be doing, that even though I've got it set up, I can't help but keep tossing it all around in my head.  Nonetheless I am so relieved to know that I have the courage to do this, that my husband is fully supportive, and that I will have a real chance for some recovery.  It may not be a complete recovery, or much at all, but one thing that does seem certain is that there will be no more progression of this gruesome disease.  And that's just fine by me.  I won't go into it all, but basically the outcome varies depending on the stage of disease you are, and I do have some hope of recovery right now.

It is horrendous.  Chemotherapy.  No person in their right mind would choose to have chemotherapy.  Unless they were dying. Or had MS.  And it was the only hope they had left.  Get it?  The chemotherapy used in Russia is a 'gentler' version though, so fingers crossed for a short wait time.  Who knows?

So I'm on the list, waiting.  And it's taking up a lot of my head space, all tied up with getting to know others who are waiting, and the people travelling with them, and wondering how I and my husband really prepare for such a huge life experience. 

Money money money

No matter where I decided to have the treatment, it was going to be expensive.  And a crowdfunding campaign seems to be the done thing.  So what the heck, it'll help with the thousands of dollars needed.  In Australia, I'm looking at $80,000 to pay for the treatment in Russia.

I've prepared my crowdfunding campaign, and of course it's brilliant.  Haha.  And I'm teetering on that 'brink' I seem to find myself on a lot these days.  I am practically a professional brink teeterer.   MS has done that to me.  This time the brink is all about getting up the gumption to actually 'go live' with the crowdfunding campaign.  

It's not easy asking for money!  I'm really struggling with that.  But stay tuned, here on this blog is where I will make the big announcement when my campaign goes 'live' - and I do wonder whether anyone will donate.  But if you don't ask, well you know how it goes.  Stay tuned!

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