95 HSCT in the news

I am a teacher and finally finished work on Friday for the five week Summer holiday.  Some of my colleagues have plans for travel to exciting places, but I’m mostly staying home and trying to save money.  The weather isn’t exactly conducive to having fun, also, I can’t walk with an umbrella and my raincoat has a broken zip, but I’ll try my best!

I should have an appointment with the team in Sheffield in a couple of weeks and will find out if there is any chance of them treating me here. If that leads to nothing, I want to get myself to the clinic in Russia as soon as I can.  This uncertainty makes life feel a bit in limbo and it’s difficult to make plans.  Over the last few weeks I have wondered about trying to book a cheap last minute holiday while I’m off work, but it feels wrong to be spending money on such things until I know which direction I’m going.  Not that I have much spare money – reducing my working hours by a fifth has obviously reduced my income by a fifth, so whilst that’s better for my health, it’s a lot worse for my bank balance!  There is no system to support those with a disability or health problems who can still work, but can’t manage full time hours, although I have just found that I may be eligible for PIP (Personal Independence Payment) so will start the gruelling assessment process while I’m off work. 

So, to HSCT in the news …

The profile of HSCT is rising all the time and it will soon be very difficult for neurologists to dismiss it, as some do now. I was delighted to hear this bit of news recently – the team in Sheffield have recently won the NHS Futures Parliamentary Award for their pioneering work on stem cells transplant (HSCT) to treat Multiple Sclerosis.   Click here for a full report …

Pioneering Multiple Sclerosis Stem Cell team win national NHS future Parliamentary Award

Congratulations Professor Sharrack, Professor Snowden and the rest of the Transplant team ???

I have written before, about the Hollywood actress, Selma Blair, who was diagnosed with MS a couple of years ago and has spoken openly in the media and via her Instagram account about her struggles with the disease, coming to terms with the diagnosis, the impact on her life and her search for the best treatment.  For the last few weeks, the content of Selma’s online activity has led many of us to believe that she was undergoing HSCT with Dr Burt in Chicago, and it turns out we were right!

Selma is in the early stages of recovery at the moment and I wish her well.  Once she’s strong enough, I’m sure she will become a truly fabulous HSCT advocate ??

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As you know, we have paused our fundraising efforts for the time being, until we know whether further funds are needed, however, there is still some activity in the back ground and I was delighted to receive a surprise donation of £75 this week.  The money came from a collection box in the Cash and Carry at Stephensons, so I’d like to say a big thank you to all their customers and staff.

The Cash and Carry is well worth a visit, even for those of us not in the catering industry …many kitchen related bargains to be had!  Find out more here …

Stephensons  

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In my last blog post, I listed 9 MRI scan tips and was struggling to come up with another to round it up to a perfect 10. Over a week later and I’ve thought of one!

10. DON’T start to cry when you are in the machine! You can’t move your head or raise your hand to your face, so the tears form two perfect puddles over your eyes …not comfortable at all and plays havoc with your mascara.

81 HSCT date change

This is just a brief post to let you all know that we have made the difficult decision to delay my trip to Russia for HSCT.  

There are several reasons why we came to this decision, amongst others is the fact that we are still quite a way short of of our fund raising total.  We have a few events coming up, so hope to make the most of those and increase our total over the coming months.

It’s been a difficult week or so, talking this through with family and friends, but I think we have made the right decision.  I have been in touch with the clinic and they have been very understanding – I hope to have a new date in place very soon.  

I’ve been feeling a bit down about this for a day or two but feeling much brighter now.  A bit of a bonus to this delay is that the timing now works really well with my job.  I work as part of the team who support and promote the educational outcomes of children who are in care.  As you can imagine, many of our children have experienced difficulties in their lives, which disadvantage them in education and in life in general.  We do all we can to support these children to overcome this disadvantage and to reach their potential.  As you can imagine, it is hard not to become involved and to care what happens to them.  In education, the Summer term is really important, with phonics screening, SATs test, Functional Skills exams and GCSEs.  I have several year 11s and it will be good to now see them through their exams and know what their plans are for next year.  I’ve also started working with nursery age children and look forward to some of them moving on to primary school.  It will be so good to see them all through to the end of the school year.  

So, I’m doing my best to stay positive and focussed and also to remain patient! 

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