Hello everyone and happy twixmas! What a strange time of year this is … it seems no one knows what date it is, what day it is or what time it is! What shall I eat and when? Shall I leave the house today or have another day snuggled up with the cat, watching rubbish on the telly?
The last few weeks have been filled with their usual ups and downs, so I’m really quite glad of this quiet time to think and reflect and to process everything that’s happened this year.
A couple of weeks ago, I received an unexpected phone call from Professor Sharrack’s secretary, asking me to come for an appointment just two days later. The original date for my follow up appointment was in early February, so I was really pleased that it had been brought forward. Niamh kindly arranged to take the morning off work so that she could come with me and also offered to drive me there, which was a big help. So off we went across a rather foggy Snake Pass, ready for my appointment.
I’m not going to go into great detail about the appointment here, but a summary would be to say that he didn’t say “no” but he also didn’t say “yes”!
Things are all a bit uncertain and he is unsure whether I meet his criteria for treatment. Amongst other things, he said I would likely meet the criteria for treatment by the London HSCT team and would therefore definitely meet the criteria for private treatment in London! Unfortunately, I don’t have time to explore the London NHS option or the funds to consider the private route (£80K+), so neither of those are an option for me.
Prof S also thinks I have Progressive MS with Superimposed Relapses, rather than Relapsing Remitting MS …I’m not sure that I understand the significance of this, so more reading and research ahead for me!
Anyway, I am to have a further MRI scan in Sheffield in January, which Prof S will then compare with the last one (June 2019), before he makes a final decision.
It was so good having Niamh with me to help with the practicalities of getting there, provide moral support and to discuss things with afterwards. I’ve had so many medical appointments over the last few years and it was good to get the views of someone who is new to it all.
We were rather deflated on our journey home. We had been sure we would have a final answer at last and be able to fully focus on either Sheffield or Moscow, rather than this weird limbo we have been in for too long. Having reflected on this further, I feel that treatment in Sheffield is now outside my reach and I need to spend the next few weeks focussing on getting to Moscow. I’m booked to go on 16th March, which is just 11 weeks away!!!
So, let’s get on with fundraising!
At the start of December, we appealed for people to donate to the fund instead of buying Christmas presents and/or cards. We were hoping to raise a few hundred pounds and to hit the £20K mark but your kindness and generosity has been astounding and this appeal has raised an amazing £1,430 …thank you so much to everyone who responded 🙏🏻😘
Our grand total now stands at …
We are hoping to squeeze in a couple of fundraising events before March and to do this we will need your help. Do you have any used bottle gift bags you would like to donate? These can be Christmas or any theme. If so, please let one of us know.
If you have any unwanted Christmas gifts we could sell or use as a prize, please also get in touch …we would be very grateful for anything you can give.
Information on fundraisers to follow (and we are always open to new ideas and suggestions too!)
I hope you all had a wonderful happy Christmas and wish you all the best for 2020. Many thanks for all your ongoing support 😘