I am sitting drinking a good cup of coffee and I can say that I’m glad it’s the weekend, and that I can draw a close to this week – it has been a confusing few days and I’ve been full of mixed emotions.
On Wednesday I went to the hospital to see my Neurological consultant to sign the consent forms for my new DMT (disease modifying therapy), after hearing a few weeks ago that I more than likely had a new lesion on my brain stem. However, when we sat down with Dr T, it turned into an appointment which flipped the last few weeks on their head. After reviewing my MRI scan it appears the new lesion they thought may be there is probably not, and I need a high resolution scan to clarify this This is good news as it could well be showing I don’t have another lesion – which would be fantastic – we will just have to wait and see.
However, this all means that the drug I had chosen as my next line of treatment won’t be an option for me, as currently I don’t qualify for it (with no new lesion) and I may have to choose another treatment. This has been slightly frustrating for me as I am now on 30 days of no treatment at all, and I had been gearing myself up for this new journey.. And now we are back to the drawing board with some new options so it is all a little confusing once again.
As always I’m super positive, and looking to the future, and for a long term treatment. But, I can’t ignore that it’s been a hard week or so with some very difficult decisions. I’m really struggling with fatigue (a 30 minute walk knocks me out for a 4 hour sleep to recharge). I’m finding it difficult to concentrate, partly down to my fatigue and the tremors continuing to reappear now and again, which also means funny noises or speech issues, and I just want to feel like we’re moving forward.
Today I’m going to take it easy and rest so we can take Jake and Poppy to the cinema tomorrow… Then I can come home and rest up watch the football with my feet up – life’s not too bad really, is it? :-).