Well after my meeting with the Prof on wednesday there's certainly plenty of good news to report. Although he had very little time for me, the upshot of the meeting really was that all my bone marrow results are fine, my central line's getting taken out next tuesday since I haven't had any transfusions or anything for ages and all the results are looking great. Also, no more drinking boiled sterile water, which is weight off my mind and everybody else looking after me.
It looks like a lot of my pills are coming down or gone completely, I should be off the steroids completely come next monday, although I'm still not getting very much sleep and still with all the mood swings and muscle cramps. It seems like the last stages to coming off these steroids are going to be the most difficult. I'm sitting here now really, really trying hard to concentrate on writing this but my anxiety is going through the roof, it's a very odd feeling. To be fair I am on my way in to hospital in a little bit to have my Pentamadine gas which isn't a particularly pleasant experience, nor is going in to that day unit in general, still my sister'l be there and I've got my diazapam to use still.
So yeah, it's difficult to describe my feelings really. All my friends want to see me and contact me, and obviously I want to see them it's just when your mind feels so foggy and clouded I just can't seem to organise anything. Even just replying to text or facebook messages has me on edge half the time, it sounds ridiculous especially after I've had so much good medical news. I want to be able to just make everyone I know realise why it is I don't reply to messages or try and see them but its living one hour at a time almost, it's exhausting.
From the research I've done and my family have done it is all standard side-effects, I've just never known anything like that, I can't wait for it to be over.
FormerMember
Good news re the bone marrow results, hope things continue to go well for you. As for finding time and energy to see friends, try not to worry about it, I'm sure they understand and if you continue to improve, so will your energy return. Best wishes, Christine xx
it's been great for me to read your blog. My son is 4 and has ALL. He's on week 9 of treatment. He has learning difficulties, autism and a global development delay which means he can't tell me how he's feeling, what hurts, how steroids affect him, etc.
Hi Will, I am so very pleased to read such a positive blog from you, for sure there are still some 'issues' but not a patch on those now in the past!! The resuts of the marrow are fabulous .. so line out tomorrow and a decent gladd or bottle of water, just in time for our next ration of summer. I believe your friends will be pleased just to see you on the mend, if you met a couple at a time if it all gets too much they can talk amongst themselves, it works well. Maybe you could sent one mass text or if you update facebook you only need do it once ..... anyway you know all that. I do know my brother was much the same, although probably no one but me knew it. However it seemed everything picked up quickly and he was back to work. The Bouncing Czech wil bounce back ....
