Tag: patience

98 The wait goes on

This may be my shortest blogpost ever!

I’ve had various friends and family asking about news from Sheffield, so thought I’d do a quick post to report that I’ve heard nothing at all!

I’ve had a really busy couple of weeks, so haven’t had time to phone the hospital again.  My life becomes a little quieter from Thursday so hopefully I’ll be able to do it then.

I am in contact with a fellow MS Warrior online, who had his first appointment with Professor Sharrack on the same day as me.  He has been allocated a November follow up appointment (despite also being told it would be mid August).  I have no idea what to read into this (if anything at all?!).

I’m trying not to worry to much until I hear something definite.  When you have a chronic health condition, you seem to spend so much of your life in limbo, waiting for test results, appointment dates and treatment decisions.  I’m not very good at being patient, but doing my best!

A small personal step forward I have made is to have my hair cut in a shorter style.  As HSCT involves chemotherapy, it is almost certain that I will lose my hair.  Many of those going for treatment adopt a shorter hair styleto help prepare themselves for the shock!  Anyway, here is the result …

Thank you so much Shelley at Essence Hair Studio

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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