[shirleyParticipant]

Hi everyone,sorry for being so very quiet,i've just spent 3weeks in hospital,at the moment i'm suffering with Graft Verses Host Disease,since June its affected my eyes,my mouth very badly,and then it moved into my lungs so i'm having big problems with my breathing,totally gasping in everything i try to do,in the 3 weeks of being in hospital they boosted me with high dosages of steriods,permantly on oxygen,which i now have installed in my home thank goodness,i don't feel any better nor do i feel worse,just have to cope as best as i can but it will eventually clear up. Anyway i was really hopeing i could make todays meeting whilst i was in hospital,and i did,and so glad and pleased that Stephen and myself could make it. It was a very interesting and very imformative,we had 3 of our top consaultants specialising in their field,and a couple of guest speakers talking of their experiences of living with myeloma and going on to have sct,both me and Stephen came away with confidence boosted and refreshed,i'd certainly go again,any way hope you all have a great weekend and enjoy our freaky gorgeous weather haha x x x take care Shirls x x x

[tomParticipant]

Hi Shirl

Sorry to hear you are having problems with GVHD, I was given a card to tell Dr's that I could suffer GVHD but to be fair never thought (nor asked) what could happen re the GVHD thyat I carry a card for:-S (yep am a numpty)

You sound like you are doing Ok with it ?

Love and Hugs

Tom "Onwards and Upwards" xxx

[brochoParticipant]

Hi Shirley its good to hear from you but I am sorry you are having problems Mind you you are such a determined person I cant see it holding you back for too long!! Hers hoping you wont need that oxygen for much longer and you can get your dancing shoes on again lots of love Bridget x

[GillParticipant]

Hi Shirley

I hope you feel a great deal better very soon. Do let us know how you are getting on.

Love from Gill

[DaiCroParticipant]

Hi Shirley,

I'm sorry that you are going through the mill with GVHD. I hate not being able to breathe freely so I really feel for you… but as long as it clears up and gets you on the road to full health then all well and good.

Dai.

[ElizellenParticipant]

Hoping you start to feel better soon, Shirls!

Love
Eliz
XX
X

[eveParticipant]

Hi Shirl
Just seen your post ,do not know how I missed it.
Well stuck in hospital with the weather so lovely out side,no fun and tired up to oxygen ,you don,t have one of those massive tanks do you,or can you get about with a portable one?
I take it the info day was at your own hospital?
anyway at least your home now,this weather is going to last till Wednesday on the SE Kent coast,its hitting 30 deg.down here,Slim loves it first time he has not had to wear layers of clothes,and I can sit in the garden in the evening, with him,me drinking G&T him juice,but just to be able to do it,seems like our old life back a little bit.:-)8-)
Any way hope this oxygen thing does not last for long,good luck Eve

[shirleyParticipant]

Hi Eve,thanx for answering back and hope all is well,not alot of fun being stuck in hospital,good to be home. I do have a tank installed in my house,ugly looking thing that it is hahaah,but it does the job,i thought i would,ve been given a portable one so at the moment i'm a little bit of a stuck at home bird,who can't do much,as i'm constantly out of breath. Everyone has been super great looking after my needs,but i'm begining to feel quite frustrated cuz i can't do my normal chores or things around the house,can't even walk round the supermarket without having to stop for air,so now i'm laid up on my sofa,thinking whoever designed the wonderful world of the website is pure genius,i'd be going mental by now,haha. I found the info day we had brilliant,interesting and confidence boosting,going through this gvh has left me feeling somewhat low these past few days,but then the amount of steriods i had pumped into me i'm not totally surprised.But the meeting picked me up and my husband too,if you ever have a chance to go to one GO,hope you and your hubby are enjoying the weather its been beautiful here in Plymouth,although its a little overcast now but still warm,take care for now,always here if you wanna ask me anything of just to chat,sound off,cry,scream or a lovely banter,ttfn Shirls x x

[PerkymiteParticipant]

You just keep going Shirl as we all know you will.

Kindest regards – vasbyte (big time)

David

[eveParticipant]

Hi Shir
Nice to see you keeping your chin up,would drive me mad too,Do not know if your are on face book,but they have scrabble on there ,and now i find myself
in the house more ,I play alot,also Slim plays to keep his mind active,I agree completely would not be without my lap top,use it to skype a lot,shows when friends are on line,so pop in to have a chat,cost nothing so it,s great.

Info day for me is London this month,cannot see me making it,Slims not keen,its a good 80miles and then getting through London and travelling back,also its on 2 week of cycle,which is a 60 mile round trip each time as we go twice once for bloods,home then Velcade afternoon:-P

Between falling down stairs and then this host verses graft you deserve a bit of a break,hope you are not stuck long on oxygen and get out there and start to enjoy your remission. love Eve

[myraParticipant]

hi shirls
Wasnt it a brilliant day full to capacity and to meet others who had travelled from further down in cornwall and devon.Our consultants were execellent like you i felt a lot more confident about the future.Im sorry that i thought you were on holiday instead of in hospital as you hadnt posted on the site.I hope you will feel better soon.Myra

[shirleyParticipant]

Hey you mrs myra,you have no need to to apologise to me,hahaha,. Yes it was a great day,certainly came away with a lot to think about and boosted confidence,this gvhd stuff has certainly made me feel rather low,since my fall back in May i just haven't felt right in myself,then this gvhd kicked in,small price to pay for longer quality of life but i know deep down its worth it and i don't regret haveing the transplants done,. I know i'll pick up again and i promise i'll be better for our xmas dinner,anyway you take care Myra and i'll see you at the next support meeting,you and Roy are going to the xmas dinner aren't you,i hope so x x x love Shirls x x x

[myraParticipant]

Hi Shirls
I do hope you will feel better soon and it will have been worth it. We have booked for the support group xmas dinner.See you at the next meeting Myra

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