So, we’ve been back a week.
I got back to work Monday, it was good to be back and everything was in good shape.
Mel is doing well, if it weren’t for the baldness and the hickman scar there’s no way you’d think she’d had chemo less than a month ago.
She started her antibiotics on Sunday and will take them for six months.
Her MS symptoms have largely gone, she’s now moving her bowels normally without assistance, so much so that the daily ‘poo report’ has ceased - she’ll tell me if it comes back!
She’s tired but not MS tired, probably residual fatigue from low red count.
The tingly and numbness in her left arm and hand has gone.
Mel went into her work the other day but ended up walking some distance between hospitals in 96 degree heat, there’s no way she could have done that a month ago, she’d have had to sleep for two days after that. At the end of the day she was tired but not exhausted.
We are trying to book the follow up with Dr. Kerr and are awaiting a call from the Copaxone people.
I will update this as things happen, I’m a little uncomfortable with all the post-HiCy stuff, when I was writing about that it was mostly factual about the treatment, the hospital etc.
Now, I’m just trying to convey how Mel is doing and that is so much more subjective. It’s not so much with the external, physical symptoms, for example I could notice when she was walking weird, dragging her left leg before she could etc.
But now mostly only Mel will know what’s happening inside her head, is she cognitively better? How is she mentally? Depressed? Happier? Etc. I can translate what she says but a lot of it is intensely private, even from me.
So, I’ll update as best I can and will still loiter around thisisms.com forum under the username ‘jamie’ (ingenious eh?) but the regular (!!!) posting will cease for now.
The next factual info will be the 3 month follow up and MRI but things are going as well as we’d dared hope for and Mel is doing great.
There are some people about to start this, and some doing it right now, I wish you all luck and success and remember - it’s not as bad as you think it’s going to be and there’s no other treatment available now or even five years from now with the stunning success of this. It won’t work for everyone, but it’s worth a shot if you’re losing hope.
Oh, and Mel had her regular ‘cycle’ start today, so no chemo induced menopause it would seem. There may be some large headed children after all!
Check out the upcoming site www.gothicy.com - it will be a site dedicated to HiCy not just for MS’ers but for all autoimmune disease.