ok so here I am and i know I haven't been talking or blogging but I hope you'll understand.
I managed to get the hospital to agree to let me out and come in on a a daily basis for my cmv treatment and so could retreat to claires whilst Russ was in Cairo. I was tired and the hot weather made it very uncomfortable but it's better than being in hospital. I had my hickman line put in a week past Friday, Claire was there as I went in and Jane waiting for me as they rolled me out and then tarty Sheila arrived so all in all I was ok, and after a week of searching for a veins and stabbings and heat packs it really was the best option. Russ got back on Monday and on Tuesday I had my day 56 biopsy. Results on Thursday for both CMV and Bone marrow were not good with the marrow obviously being the most devastating.
I don't really know what to tell you guys, I can do nothing but carry on. So tomorrow I head back to the Guthrie ward for another treatment in the hope that that will kill the bastard and they have also stopped my anti rejection drugs in the hope that that will induce some graft versus host disease. So it seems like I have to get very sick again in the hope that I can beat this. Not a prospect I relish but if it works. All the time of course the drugs are taking their toll on my body, as you can imagine. So not brilliant news guys and the reason it takes me time to blog is because I feel like it's all so depressing and I didn't want it to be like this.
The boys have been here this weekend, Ross has been back since Wednesday having finished his exams and the other two finish this week and Russ will go and pick them up - so it will be full house! Both Ell and Ross are then heading off to Cairo for one last fling and Russ will head out on 8th to finally pack the house up and say his final farewells. I will be god knows where !!! There seems to be little point in planning as i've no idea what's coming and ideally it would be a good sign if I was sick and the donors cells were attacking mine particularly the bad ones.
So everything keeps turning, each morning, each minute I try to see the good things - hard sometimes - but not impossible. I've been reading
"you can't afford the luxury of a negative thought" which helps me stay positive and in the moment. I wish that there weren't houses to buy and sell, countries to move and that I was living nearer my friends and family, it would take the pressure off, but it just is the way and I can't change it. Russ and I just go on. Your support has lifted us through so many dark times and I know it will do the same again, even as the odds get shorter my heart gets bigger and my determination stronger. I could be that 5 % couldn't I ?
Bah humbug - I need to end on a lighter note
Beckhams free kick ? no.
My toe nails - trimmed ? no.
Oscar wilde - Yes
Over the piano was printed a notice :
Please do not shoot the pianist. He is doing his best.
And that's all you can ever do.........
LOVE YOU LOTS
M
Hi Moira,
Leukeamia certainly does suck & it's OK to shout from the rooftops that your're getting a damn raw deal!!
It must be really hard to keep positive in the light of this news but try and keep going it's your fighting spirit that has got you this far. Good that the boys are soon all home to be with you, it will give you I am sure it will give you strength.
I don't know if it's worth a try and you would need to talk to your medics but if you can swallow pills (little capsules) and they OK it. Aloeride may be worth a try to boost your immune system - it is Aloe Vera with the Aloin taken out (the laxative bit). www.aloeride.com As far as I can tell it does no harm and since I started taking it my radiation colitis has improved as well as my energy.
I will pray you can really beat those bad cells up - hey no space invaders allowed in your blood & bone marrow!! Send a little crunchy guy to gobble them up - Ok I haven't lost the plot you are probably too young to remember the space invader arcade game.
Love & Best Wishes to you all
Jane