[shirleyParticipant]

Hi Mal & Bruce,i haven't been online for awhile so missed your post,. I.ve go MM and go to Derriford Hospital,i'm normally on Birch Ward they got the most fantastic team there,hope Bruce is doing good and that he's come through the worst of it all now,it won't be long before they let him home,thats when the recovery starts,i've had 2 sct,at he moment i dealing with Graft-verses-host,been pretty poorly with it,but i'm dealing with it,anyway hope all goes well for you both and enjoy your belated wine for you anniversary,always here if you want to ask anything ok,take care Shirls x x x

[shirleyParticipant]

Its me again apologising because i got the names wrong,i called you Julie and your Lorraine,so sorry for mix up x x Shirls x x

[shirleyParticipant]

Dear Julie,our sincere condolences to you and your family over the sad loss of your dear mum,some of her post used to make me laugh when low,always gentle on advice etc:. Cherish her memory and the good times you all had,god bless Shirls & Stephen x x

[shirleyParticipant]

Hi Mari,first of all please don't ever feel like your a burden because your not,we are all here for reasons,and this is the best site for ranting./screaming/laughing and getting everything of your chest. As David just said it will happen to us all eventually,but i'm sure once Steve has been given the right dosage of medication he'll pick up again,gotta hang on and stay very strong,best wishes to you both Shirls x x x

[shirleyParticipant]

Hi there,right where do i begin,like you i'm normally a slow decision maker but i'm from a family of 12,and when 10 of them got tested for me to have the allo i only had 1 match,thats why in the end i went ahead and had it done,and despite the gvhd i don't regret doing so. I had a full allo done,melphalan on the Moinday and then Transplant on the Tuesday,and then let it sail through,first 100 days i did really well it put into remission,but then they wanted this gvhd to kick in,its left me feeling poorly and low,i started of with mouth sores,lip blisters and blood ulcers,funghi and a very white sore tongue,couldn't eat anything hot or spicy,thats all cleared up so to speak just a sore tongue which is nowhere near as bad as it was,it has now gone into my left eye,its just dry and itchy,so i've drops for them,but its affected my lungs badly,i'm forever out of breathe and gasping for air,so i'm a little bit down in the dumps but as always i'll pick up again and hopefully be well for xmas this year,just remember this is my exeperience everyone is different in their healing,treatments,take care for now,must go for now dinner table is calling me hahaha,speak later Shirls x x x

[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

[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

[shirleyParticipant]

Hi there Wendy,i don't know if my post can help you at all but i'll try my best foryou so that it helps you make your decision,and to think of future treatments that are coming widely available. I was diagnosed with M.M 13th August 2009,age 43yrs,in them 2yrs so far i've had an autogenic S.C.T,i had only harvested enough to have 1 go at it,and then in December 2010 i had my 2nd S.C.T,and that was done allogenic using my sisters stem cells, i felt really poorly with both, you know the usual sickness and going to the loo often and feeling exhusted,its draining leaves you with a large bag of mixed emotions, 30th March this year i was finally told i'm in remission and its the best feeling ever,. When my consaultant told me she would like for me to have another S.C.T using donar i was quite taken back that she wanted to do 2 transplants in a year,anyway after we sat chatting about the affects and some positive outlook ithought i must be crazyto have it done so quickly after the last one,but my age was for me so never hesitated to have it done. I'm nearly 10 months down the line and doing ok,at the moment i'm suffering with GVHD(graft-verses-host-desease)for my doctors they are pleased that this has kicked in,for me though its very unpleasant,they wanted this to kick in because it delays the cancer coming back and gives me good quality of life that i can have with my family. You say in your post you don't have any siblings,but have you looked into having an non-unrelated donar,they might help,might be worth reading up about and recieve more uderstanding. Wendy i wish you well in your decision making,i never hesitated,might have been different if i never had brothers and sisters who knows hey lol,good luck,stay strong and well,and if you wanna ask me anything just ask away ok,take care best wishes, Shirley. x x x x

[shirleyParticipant]

Hi Bridget,honestly you made me laff with you good sense of humour,and please scream,shout and curse all you want,. Sorry too that this is bad news for you,lets hope its just a small blip and that they treat you well,for now keeeeep currrrsing,take care Shirls x x x

[shirleyParticipant]

Hi Amelie,after reading some sad post on here today,its lovely to see posititve post,. Big well done to you for making John.s dream come true,and well done John for seeing it through,take care Shirls 🙂 🙂

[shirleyParticipant]

To Min and family,my sincere condolences to you all,take great care Min,love and best wishes Shirley x x x x

[shirleyParticipant]

Hi Chelle sorry to hear your husband is poorly and so young too,i was 43 when i got diagnosed with MM,that was 2yrs ago now. I've not experienced what your husband is growing through,so i hope for both your sakes that this is just a small wee blip,and that he starts to feel better again,keep us all posted with his progress,and don't give up,best wishes Shirls x x

[shirleyParticipant]

Hi Gina sorry to hear that the medication is making your mum poorly,i'm ann MM patient but i've never taken Velcade yet so i don't know what to expect,but i do hope it won't be long before they reach a new decision on what to give her next and that she's starting to feel well again,take care for now best wishes Shirls x x

[shirleyParticipant]

May you rest in peace Gaye,my sincere sympathys to your family and friends,. Trully inspirational lady who always gave sound advise. Gaye you'll be sorely missed,god bless, Shirley x x x x x

[shirleyParticipant]

Hi hello Gaye,i must firstly agree with everybody who has answered your post in saying what a trully,lovely and brave lady you are,i was diagnosed 2yrs yesterday with this god forsaken disease,and i too would be tired after a long gruelling 8yrs of needles,bloods medication,hospital appointments,.Its a very hard decision to make and you are so brave in making it,. I do hope that they are making you well and comfortable in the hospice,and glad to hear that you can manage the gardens on a nice day,in the meantime Gaye, you take things real easy and take care,love and best wishes Shirls x xx xx x

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