Hi all
Just thought i'd start writing a blog thought it might help me and maybe some others get through some touigh times.
Just aboout to start my next lot of chemo in every day until 22/12 quite an intense time. still just taking one day at a time sometimes when feeling crap just one hour at atime!! Bit fed up with all this talk of chritstmas not a good time of year when your poorly. Still am organised and have done all shopping thank god for internet! and wrapped so husband doesn,t have to worry too much. he has enough on his plate.
Take care all
ellen
FormerMember
Hi Ellen
Christmas at our house has been more or less cancelled apart from our grandson's we will be spending Christmas day in hospital as my husband will be on his 2nd cycle of Chemo for his AML we are however planning to have a little celebration when he gets home from his 1st cycle whenever he is well enough he will get a week at home before his next 6 week stint in hospital. I would like to try and get to a Panto but until we know when he is getting home we can't even plan that. But you right about sometimes having to take life about an hour at a time especially when he has an infection But we will get through it
Honestly, Christmas is just a day. (I don't like all the fuss and bother anyway, just call me Mrs Scrooge!) My advice to you is to dish out the pressies, buy in a ready meal from Marks and Sparks (unless your husband is a good cook) and spend the day with your feet up in front of some crappy telly and chill out. God knows you deserve it. A little drink of something you fancy and some chocolates wouldn't come amiss either. Just tell everybody you're having a rest and to leave you in peace. Stay in your pyjamas is you want to. Lock the door. Don't answer the phone. Indulge yourself. Heh, I think I've talked myself into doing the same!
Hi Ellen, This is my first posting on any site EVER so forgive me any mistakes. Just wanted to say "keep your chin up". This nasty thing you have is very beatable, trust me I know. I had to go through two cycles of chemo involving two separate rounds each plus a high dose cyclophosphamide then full body radiation before a transplant. I also had the Philidelphia chromosome + thing as well which had to be sorted out before I could go into remission. Do they give you a transplant for ALL in the UK? Anyway, keep up a good fight and beat this thing. You will feel better before you know it. Good luck Craig.
Hi Craig thanks for the comments, the docs haven't decided if i'm going down chemo route or transplant route. I am in week 7 of my first lot of chemo so I'm in hospital every day. I feel like i'm in along tunnel and I just need to know that there is light at the end of it. I really want to see my two small boys grow up. I havn't found any support groups where I can talk to people going through the same as me, which is really surprising. Anyway enough rambling thanks again for the contact. How long have you been in remmission?
Hi Ellen. I,ve been in remission for just over 9mths now and feeling really good. I had a bit of trouble with graft vs host just after my transplant in February. Was put on 175mg prednisolone(down to 5mg now) and was eating like a horse. If I could give you one piece of advice only it woul be to keep up the mouthwash as much as you can. It really helps with preventing mouth ulcers if you havent had them already. I think there isnt much support for what we have because there arent many people our age who get ALL. Seems to affect younger people more. Sounds like youre having different treatment from what I did. My chemo was called Hyper CVAD and was only 2 weeks for the first part and about 1 week for the second with a weeks break between. Had to be in hospital for 7wks at a time. How hard it must be for your kids. I cant imagine what it must be like for them seeing their mum so sick. Anyway, there most definately is a light at the end of the tunnel and its probably closer than you think. I look back now and it seems to have gone so fast. Good luck to you and your family and feel free to ask any questions. Craig
