Colleen Displaced

one ordinary woman -vs- Multiple Sclerosis

HSCT - Stem Cell transplant - from exploration to first steps

I'm  almost there.  I've done all the exploration, the research, and ultimately wasted a lot of precious time that I'm not sure I have.  And I'm angry.  Angry that I didn't know about HSCT years ago. It's been available for around ten years, and even one year ago I'd have been much better suited to a stem cell transplant.  My MS is progressing rapidly and I fear that in a matter of weeks or a few short months I might have missed my opportunity. I'll  never know.  Only six months ago I could walk reasonably normally for a large portion of most days. Now my left leg is spazzy all the time and it's obvious I don't walk normally.  I have this weird stiff-legged limp and even though I still walk, not well, but I do walk - it's never for long.


And it's embarrassing

Nobody and nothing prepares you for the embarrassment of disability.   The pitying smiles of medical staff, and people everywhere.  It comes as a shock, and it hurts.  And I'm terrified of not being able to walk at all ...

So I need to at least try the one treatment that's had success.  Not 100% success.  But success for over 70% of people who've had it.  I have to try an autologous haematopoetic stem cell transplant.  I can't spell that and I can’t be bothered checking if I got it right, I don't have time to be correct. 

I've tried a cacophany of drugs over the years since diagnosis (1997/98), none of which did anything good and instead seemed to make things worse.  Every single one - with high faluting names like Copaxone, Avonex, Rebif - and more.  I've been willing and taken part in clinical trials.  I've tried.  And tried.  And all those drugs were supposed to do was slow the disease down so it wouldn't progress.  Just a coincidence they say, probably would have got worse faster without those drugs.   I improved after I came off each one, sometimes for years, lately not so long.  Seems strange to me.  But what do I know?  Thing is, I don't improve, ever, any more.  Things just get harder, things just stop working, little by little.

Guess that makes me sound bitter, I'm not.  I truly don't blame anyone for the fact that the drugs haven't worked.  Nobody knows how to get rid of this disease.  The available drugs are all there is, and I've been offered them.  Plus there's no denying that there's plenty of work being done to find the elusive cure.  And it's a fact that my neurologist has always been supportive, even when I've been pigheaded and stubborn, and I need that support even more now.  Here's hoping the support is there for my next saga, which I'm about to fill you in on!

We all want something that puts a stop to MS

Those of us who are dealing with it, and the medical professionals that treat us.  Thing is, we (the people with MS) don't need something that slows it down (or doesn't).  Those of us combating MS would much prefer something that will repair the damage, and/or completely stop MS in its tracks.

Anyway, I'd been waiting months for my neuro appointment, so I could get the ball rolling, to try stopping this disease from putting me in a wheelchair.  There's a HSCT trial under way in Sydney and I want to be accepted for it.  I need my neuro to get on board and do what they can to get me in.  But just my luck (or perhaps fate) my neuro took time off, right before my appointment was scheduled.  So I've had to wait another month, and see my walking become much worse.  It's so hard to walk now that I'm frantically worried about even making it to their office.  It's one hell of a long walk from the car park.  Heaven help me.

But I'm ready, I have all the criteria for the trial, I've spoken to the trial team.  I know it’s an awful treatment, involving chemotherapy.  But it's worse than awful to be disabled, and this treatment gives me at least some hope, and that's better than where I am now, with no hope at all.  I can handle losing my hair, I can handle the nausea and vomiting.  Believe me if I can carry on with the zillion ever-changing symptoms MS throws in my path, I can do chemotherapy. 

Ok, I'm rattling on so it's probably better that I stop.  My appointment is early next week, so if you could just cross your fingers for me I'd appreciate it.  All I want is to actually LIVE this life I've been given.  And this could be my one chance.  All for now, until next time, be nice to everyone won't you?


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