[shirleyParticipant]

Hi Jet,i've had 2 sct,my first one was autograph,and boy was i poorly,i was in hospital for 3weeks,and man was i poorly,lost my appetite,had s&d quite bad,i slept alot,towards the end of my 3weeks i just wanted to be left alone,i cried,because i felt i couldn't take anymore,my poor husband went home quite flat,but when he turned up the next day i was a totally differant person,i'll be honest its a very emotional experience to go through,but i did it,i had my 2nd sct at xmas just gone and i had an allograph,using my sister's stem cells,i sailed through this one,wasn't as poorly as the first,but still had sickness and diarrhea,it did leave me with mild depression,i was very tearful, again i lost my appetite,and that took a good few weeks to come back,i'm now in remission and doing really well,please don't go worrying about it,you'll be fine,and i do wish you alot of luck,and hope all goes well for you,the procedure itself is painless,good luck and best wishes Shirls x x

[shirleyParticipant]

Hi Gina,hope you ok,and hey you come on here and rant and rave as much as you want,i've got mm,so i cam sympathise with you and your mum in the pain she has,must be a very worring time for you all,like Jo & Bridget suggested change your consaultant if you are not happy with the way your mum is being treated,your entitled to,. In order for her to be well again she needs to be comfortable and at ease with whoever is treating her,wish you alot of luck there,. And congratulations to you & Ian on your forthcoming marriage,i've been married 1yr 3 weeks tomorrow,can't believe how time flies,anyway in the meantime you come back on here and rant & rave all you want,you and your mum take care,best wishes Shirls x x:)

[shirleyParticipant]

Hi Amelie,did John have an auto or allo graph,if he had a donar then he may experience this,i had an allo using my sisters cells,and doing really well,but my hospital wanted Graft verses Host disease,and boy is it kicking in or what,i have very dry skin on my face/ears/chest and a very sore mouth,i've had very bad blood blisters on the roof/sides of my mouth,i have the most ugliest tongue going thats been blistered and white,with the help of going back on the ciclosporin and steriods i'm starting to clear up lovely again,i find e45 cream and dove moisturiser works really well,hope John starts to feel better again soon in the mean time you both take care and have a good weekend best wishes Shirls x x x

[shirleyParticipant]

Hi Helen,when i had my stem cells collected i had to stay in hospital over nite because they couldn't stop the bleeding when they removed the tubes. I can honestly say i didn't feel as bad as you,tired maybe but that soon wears off,if you are still feeling the way you are now on Monday then i would say contact your consualtant,maybe another reason why you are feeling like this.I hope you start to feel better soon and wish you the very best of luck with the transplant,i've had 2 now,first one was using my own cells and then at xmas i had my sisters cells,and i'm doing really well,and i know you will once you have it done,take care for now and try and have a good weekend,best wishes Shirls x 🙂

[shirleyParticipant]

Hi Dai,i do hope your feeling alot better,like the others i thought you wewre on holiday too,still you were in the right place at the right time,glad to hear your home again,you just take thing easy. Best wishes Shirls 🙂

[shirleyParticipant]

Hi Myra,lovely to hear from you,its been a slow 6months since the allo,and i'm doing really well,my only problem is just my mouth,but thats starting to clear up lovely now,and i thankyou for your concern. I nearly made it to the last support meeting but Dr Hamon wanted to see me, glad that this gvh is working it will delay my mm coming back early,so good al round,, Hopefully i will be at the next meeting,so it'll be great catching up with you and the others,you take care and i'll see you soon. Love Shirls x x x.

[shirleyParticipant]

Totally agree Debs,just go with the flow,i used to eat alot of jelly sweets,needed sugar badly to begin with,didn't realise how much weight i put on until i saw a birthday photo of myself,(URGH),and i do have the occasional glass of wine,me and my hubby like to have a drink or 2,we don't smoke,we are now careful with our diets,so i don't feel bad having that odd glass haha(HIC),. Hope all goes well for you on Monday when you have SCT,good luck. Gill like i said don't worry about it,it will drop soon,and you take care in the mean time and enjoy what you eat,take care for now Shirls x x x

[shirleyParticipant]

Hi Gill,i can surely sympathise with you,when i was on steriods i put loads of weight on,had a proper moon face too hahah. Once you stop taking them your weight will start to drop to,since i got diagnosed 2yrs ago i've lost nearly 3stone. At the moment i'm back on steriods to clear my mouth as i've graft verses host disease,so i've been pretty good with what i eat,mind i'm on a low dosage so its not been to bad. You will be fine and please don't worry,i'm sure its happened to loads of people,it did me,i wish you well and take care x Shirls x

[shirleyParticipant]

Hi Jo,all my head injurys and bruises have cleared up lovely now thanks,still get the odd twinge in the back,but doing good,i had a check up yesterday,and they finally gave me some steroid cream for my lips,thank god,i was starting to get quite tearful with it all,but i'm picking up lovely again,hope all is well with you and enjoying this beautiful sunshine,take care & best wishes Shirls, x x x

[shirleyParticipant]

Hi Scott,i'm in remission now and getting this gvh will delay the mm coming back so quickly,i know it will come back eventuallly but not so quickly,i promised my husband that he'll get a good few years of me nagging him hahahaah. I do hope what ever treatment they do for you next works. I was diagnosed 2yrs ago next month,and i've been pretty positive throughout,yeah i've had low days and pretty tearful days but mostly very upbeat days. I do hope you manage to have a sct,the best thing i ever had,but i do understand what your saying,yeah it will be risky,but can i ask what would you like to do,sit and suffer or take the risk,whatever you decide i wish you luck and take care x xShirls x x

[shirleyParticipant]

Hi Angelina,i'm so pleased your going ahead with the memory book. Your daughters will love & cherish it in years to come,.. I'm from a large family with lots of brothers and sisters and loads of neices and nephews,i never had children of my own but i know in my heart that if i did i would love for them to have this book,. My husband is ex navy(submariner),he loved his time serviceing and still very often talks about it today,so getting the materials for John will be great and very interesting,wish you all well and good luck with the book,i might even do one for my family,take care and enjoy the lovely weather Shirls x x x

[shirleyParticipant]

Thats great news David,keep it going,sounds like your doing really well,and i hope you have a wonderful time when you visit Rhine and Moselle,..Best wishes Shirls :)…

[shirleyParticipant]

Glad to hear all is going in the right direction. I've had 2 sct now my last was at xmas just gone,i'm 6months down the line now and doing really well,so good luck to you on getting your 2nd one. Enjoy your time away,i'm away in August,like you it will great not to think of hospitals,needles,bloods ect;take care Shirls 🙂

[shirleyParticipant]

Big massive well done to Steve,you must be so proud of him,i'm a mm patient,and so wish i had the energy to achieve something like that,. It trully is an inspiration to us all,keep it going Steve and well done again.Best wishes Shirls x x x 🙂

[shirleyParticipant]

Roz,i agree with Tom,never ever feel your on your own,we are always here if you want to rant and rave,scream,cry,or to have a good laugh.I'd be lost without this site,haven't been on for awhile because i've been abit poorly and depressed but i can gladly say i'm picking up again,but enough about me. Enjoy your garden when you finally get it finished,we've been pretty busy with ours as we've been making it puppy proof,yep we've decided to get me a puppy and encourage me to get the house abit more,anyway you take care and stay strong best wishes Shirls,PS:we are always here for you x x x

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