55 Making plans

Since realising that I’ve reached the end of the road in trying to access HSCT in the UK, I’ve had a lot of thinking and decision making to do.  

In fairness, the neurologist hasn’t said a definite no, but it’s clear he would want me to try various drugs and see what happens and that this could take several years.  In the meantime my MS could continue progressing and I could accumulate more damage to my spinal cord and brain.  Or I could have a further relapse and new symptoms and problems could appear.  I really don’t want to get any worse.  

HSCT can’t reverse all the damage to the central nervous system caused by MS so it makes sense to have it sooner rather than later and before further damage occurs.  

There are other factors to consider here too.  There is an emerging line of thought that HSCT is more likely to be successful in those who have not spent a long period of time on disease modifying treatments.  Clear data on this is hard to find, mainly because medical trials are in their early stages, but I am aware of several haematologists suggesting this and in fact, have seen a recording of an interview with my new neurologist suggesting this may be the case! 

Another issue is my age.  I want HSCT now!  Before I get any older and while I still have lots of living to do!

While researching HSCT, I have found that it is a frequently used treatment for several blood and bone marrow cancers.  One of those is Multiple Myeloma. This is a type of bone marrow cancer, which my beautiful mum lived with for almost 10 years.  I wonder if she could have lived longer if HSCT had been available to her then? 

My mum was 53 when she was diagnosed with MM, the same age I am now.  I wonder what she would want me to do?  Would she encourage me to keep fighting and get treatment?  I wish I knew. 

Those of you who knew my mum, what do you think she would say?

My application to the clinic in Moscow went in a few months ago and I have been given a provisional date of 23rd April.  Somehow, I need to get the money together before then.  I realise it’s not going to be possible to raise that kind of money in just a few months, so I’m going to start looking at borrowing options, maybe increasing my mortgage, in the hope that we will be able to continue fundraising when I’m well enough.  If any friends have experience of finance and can advise me how best to approach this, please let me know.  

As if I haven’t got enough worries spinning around in my head, another one has recently made its way in there!  I will need to pay for my treatment in Euros, so of course, I have had my eye on the exchange rate for a while.  It has occurred to me that if we actually do leave the European Union on 29th March, with or without a deal, the value of the pound will plummet!  I quite likely won’t have enough, even if we have reached our £40K target!  I have no idea how to plan for this …should I try to pay before 29th March? …should I convert my funds to Euros as I go along? …is it possible to have savings in Euros? …HELP!

Damn you Brexit!

Anyway, I’ll be back soon with information on our next round of fundraising events.  In the meantime, thank you so much for all your ongoing support ❤️