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2nd Transplant and my daughter is so ill



  • Oh Helen - I think that you really need to be kind to yourself. You have gone through and are going through so much and it’s no wonder that you sometimes feel overwhelmed with it all.

    I can remember at the beginning of my daughter’s journey , reading about the phsychological impact of such a serious illness . My daughter is very strong and I couldn’t imagine that happening to her . I was very naive and didn’t know much about blood cancer! It’s such a hard illness and when you think that you should be getting better, you’re then hit with all the dreadful side effects of the treatment. So please , pat yourself in the back and tell yourself how well you are doing, even on your very bad days . Because you get up, keep going and help so many others .

    my daughters boys are 3 ( 4 next month ) and 6. They are doing amazingly well and thank you for caring.

    we’re always here for each other.

    sending hugs. 🤗

  • Hi helen

    i feel like that a lot , my memory , I loose my train of thought , I don’t think of dying , I have terrible mood swings some days , I think it’s just part of the course

    I’m trying to be kind to myself and give in some days take care stay strong ❤️

  • Hello, thank you for your kind words.

    After my appointment I researched an online course I did before the leukaemia diagnosis and tried to find it, it did me so much good that first time around. It was a free online course on the futurelearn platform about mindfullness and self compassion.

    I did find it, it's still there, but I've started another one... psychological first aid PFA. it wasreally interesting and I see that you both, and my Dr are right. My symptoms are from the illness and trauma from being in hospital from april/may to February the next year. I guess i hadn't accepted the phenomenal mental recovery process.

    I don't like to talk about leukaemia or cancer because I'm cancer free and that helps me. I don't identifx with cancer patients. I've just got this awful cgvhd.

    One of the things on my 'treatment/to do' list is to write a diary. I started one and do it from a funny perspective... I take the mickey out of the gvhd ... it only works when I'm relatively ok, but it's good to get a bit of distance from it.

    Love to you all, I'm still here!


  • Good morning, I'm off for my ecp today. Looking forward to getting home tomorrow and feeling a bit normal.

    I had a meal out last night and could taste everything. It was amazing.. think I must be getting taste buds back. Let's hope it stays, at least a while.

    You're all with me. Thank you, I hope you're all at least ok and feeling stable and calm. That would be great..



  • Hi Helen

    that’s good news about your taste buds , it’s awful when you can’t taste food take care xx

  • I haven't been able to taste since june, july 2021. It's wonderful. I didn't even suffer any more, I just didn't taste things.

  • Hi Helen,

    That is such good news for you. You can now start to enjoy food again and give you the desire to eat. Such a long time for you. I lost mine a while ago but luckily with time they did come back. It is so strange the different timescales for everyone but it tells you your body is still working in the background to fix things. I still feel full most of the time due to the tight fascia band around my stomach h and lower back but I think I am starting to get hunger pangs bit by bit. In a way not to have them was also nice as well as I could get away not preparing food.

    on a good note I think for me as well I think my tightness in my legs is starting to reduce as my range of motion has slightly increased not that it is benefitting me at the moment but the tests I have done show that I think I am moving in the right direction even though I cannot feel the benefit yet. I just want to carry out a few more tests to confirm to myself that I am right or not. If I am right it will still take time to get more range of motion back, stretches, exercising etc to get more back to normal but it then gives hope I am going in right direction.

    Hopefully this goid or possible good news will give us all a lot more hope of improvement and getting better.

    i hope everyone is well and things hopefully for everyone if not physically then mentally.

  • Hi all

    i haven’t had good taste buds since 1998 due to radiotherapy , I can’t taste mild food ,but can’t eat spicy , I really hope your movement is getting better 🤞that will make a big difference stay strong❤️

  • Hi Michelleanne

    Have they got any further with a diagnosis for your chest problems? You've been so long without taste. That's really hard :(

    How's it going?

    Dave, I'm glad at least markers and tests are suggesting things are positive. I hope very soon you start feeling the benefits. Who knows... maybe you'll crack this gvhd. Wouldn't that be great ... I'd immediately try get a job.

    Alison, Audrey... how're you two doing? How's your daughter doing Audrey?

    I just got back from lymph massage and senior gymnastics- all on one morning... absolutely exhausted. I'm on the sofa.

    Love to all,


  • Helen, it’s so good to hear that the ecp is going well and you are now managing to enjoy your food . You sound so much more positive which is wonderful and I hope that this better journey continuesi🦋

    It is also great to hear that you feel that you are moving in the right direction, Dave . I know that it must seem slow and very frustrating at times but if you can see the small improvements, that’s half the battle .

    my daughter was in getting her immunoglobulin transfusion today. She had her laptop in with her , working away while this was going on . The colds are still relentless but they are not stopping her from functioning which is so good .

    you are all on such a roller coaster journey, and you all seem to be coping as well as possible . I’m in awe of everyone and sending you all positive wishes that these small steps forward continue and even change into larger steps . ❤️

  • Hello all,

    It's been a while.

    I spend too long online, discovered Facebook... some nice groups, slow stitching... I used to embroider before. I'm not back there yet.. it's still nice to share about other things though.

    Unfortunately my feet are getting worse. I know where it'll end up again if it goes on. I'm going to phone them tomorrow.. I don't want to start using the opiate again, however little.

    I have the feeling I was improving but now going backwards, friends also say getting worse with walking. I've talked through my dark thoughts and depressed days with therapist and hubby which was helpful. Hasn't changed anything but I know I need to feel in control and thats ok.

    I'll get off, night night y'all;)

  • Hi helen

    i know how you feel , one step forward then 3 steps back , I like to knit when I’m not so tired or I read

    hope they can sort something for your feet & you feel stronger soon ❤️

  • Thanks Michelleanne, and i hope they can find a way to help you with your chest. I hope you've got a good book on the go and some nice Garn for your knitting project.

    I hope you, Dave and Audrey are doing ok too. So pleased about your daughter Audrey. It's wonderful. Look after yourself a bit more now that you have a little more time. I guess your emotions were on hold for that acute time.

    Night night,



  • Hi Helen,

    My progress forward is non existent too. I also feel / know I have also gone backwards as my mobility has declined with less ability to walk, looks like I am going to have to get some carers to help me as I live alone as a lot I now cannot do. My leg seems to be weeping lymph most of the time and the more the skin is moved or stretched the more it seems to leak so I guess you walking on a wound like this will probably make it worse. The only way it seems mine will get better is waiting for the scleroderma to reduce and reduce the tight skin so the lymph can escape naturally and that I know will take time. Hi long who knows? When this happens hopefully it will be the turning point. I hope , you start to feel better soon. e all well I

    best wishes to Audrey, michelle, and Alison. I hope you are all as well as can be.

  • Hi Dave

    I really hope you find some ease soon , don’t give up you’ve come so far even if you don’t think so ❤️

  • Hi Dave, my Dr at the lymph clinic said he couldn't help me until the skin improved... hat was when I got that intensive cortisone treatment every 2 days.... Unfortunately my skin is also weak, leaky and the same Dr said when/if one wound closes that another will probably open. I think ecp is the only hope. The odeamia wrapping is helpful, but time consuming. It helps the skin physically stay closed.. although evenings (like now) I'm feet up on the sofa and it's dreadful. I'm dreading putting my feet down to go to bed. But the wrapping has been most helpful, also the comment from the registrar that my enemy is gravity.

    Anyway ... it's a bit doom and gloom.. I am prescribed tacrolimus as an alternative to the cortisone but don't use it much cos it doesn't seem to help.

    Night night all,

    Love to our kind group, sleep well,


  • edited May 6

    I've been giving tacrolimus another chance and , with emollient/Dexeryl and other moisturisers for dermatitis ... it seems to not be getting worse. I even went out with Nordic walking sticks tonight and got some amazed looks in the village that I was so good at walking. One farmer raised his eyebrows and did a double take.

    This morning I had physio so my feet were beautifully massaged (not the wounds) and wrapped, even with upholstery/padding. I did take paracetamol too, and electrolyte.... but still... I'm really proud of myself tonight. Don't know how long it'll last , but who cares!

    Dave, how's it going? I was reminded of your words this morning... my physio said they used to say wounds need to breath, but now they know they need warmth. She used to work in a lymph clinic and said it was always hot for that reason. Maybe you could try warm fatty wraps? And you can get tacrolimus in the uk. Does it have negative side effects? The other physio said my skin is like a burns patient and needs to be kept moist... I would so like you to see some improvement for you. Have you researched treating diabetic wounds? They're like us, immunsuppressant problems., maybe something there.

    Anyway i must relax now , calm down a bit and get to sleep. Sorry if I haven't fully understood things Dave... I can't believe today.. did so much... I'm in a bit of a whirlwind still.

    Night night all... I'm often thinking of your daughter Audrey, she makes me smile. I'm so very pleased for you all. I hope things are stable.

    Michelleanne think of you too ... hope you're coping with your chest. How's things? Is it a cough? Weazing? How do you notice it?



    Sorry if I'm insensitive. I mean well.

  • Hi Dave, ... mepilex is for burns ... just googled it. That's new to me. It gives me a new approach/search tag, for my skin. It's for open, leaky wounds. You can leave it on up to a week. That's the stuff I've been using... without 'ag'. It's silicon and doesn't breath. Maybe you could get a bit prescribed. I cut it into strips.

    Maybe burns treatment might help. Please let me know if I'm annoying you, if you'd like me to leave the topic for a while.



  • Hello Michelle , Helen and Dave

    I’m so sorry that you are all being faced with so many health challenges . I can’t begin to understand what you are all going through but I do know that you are all so resilient and even if it doesn’t seem that way to you sometimes , it certainly seems that way to me .

    I hope that the sunny weather will continue and that you will all be able to get out in the sunshine even if it’s just sitting letting the warmth seep into your bones .Dave, it must be hard living on your own with your lack of mobility and although we can’t help with your physical problems , I hope that being able to chat with us here , helps you to feel less isolated .

    Michelle, Dave and Helen , I’m so glad that you are part of this group and although I am not a patient, your compassion and interest in my daughter and myself is very much appreciated

    My daughter is doing as well as possible and it’s a miracle that I thought would never happen . I’m still always on red alert but after what she and all of you have gone through , I suppose that it’s understandable

    we’re having quite a tough time with the impending court case against the driver who killed my son . As you can imagine , life is not easy but like my strong friends here , I get up every day and try my best .

    im always thinking about you and I’m always here for you. ❤️

  • Hello Audrey

    Thank you for your update, it really is very very helpful for me to know that your daughter is doing ok. Maybe she'll have a challenging path ahead, who knows. I met a sufferer by chance in front of a waiting room and he was having his annual check after almost 30 years of no trouble after a sct and leukaemia. I think I mentioned him before. It really wasn't a problem for him, and he was very sporty/fit.

    I'm sure it's helpful in order to be able to find the physical strength to approach the court proceedings. I can't begin to imagine what you must be going through. I have a son 28 years old... it's very difficult even to write these words. I am unable to help you in any way but please know that I'm sending you kind, loving energy.

    Thank you for your kind words Audrey. I'm feeling emotionally stronger since my recent dip. I was in a very dark place but have been able to talk it through with my gp, therapist and now hubby. I guess I'm frightened of getting a different cancer, losing sight, through possible list is endless with this gvhd. But I've now got a plan and hubby is with me on it. Switzerland isn't so far, if you know what I mean .. and they offer good palliative services if it got that bad. Since I've worked that out I don't feel such a victim. That helplessness is very frightening.

    Anyway, I'll get off here... it's mother's day here today, maybe you can enjoy it with your daughter. Are they still living with you? Not sure if they were.

    Dave, hope you're stable, Michelleanne, you too. Is it lung gvhd?

    Alison, if you're around, love to you too. It's hopefully a good sign that you're not here.

    Love to you all,


  • Hi Helen

    thank you for your kind text and also for sharing some of your feelings regarding your illness. I can’t begin to imagine what you are going through but although you understandably have dips when the gvhd seems overwhelming , you must try to focus on the better days .i know that’s It’s so easy for me to give advice when it’s not me who is suffering and I think that it’s good that you have a plan in place although I hope that it always remains just a plan.

    Please keep talking to us here. We all want to help and you are so good at encouraging others that we can do the same for you.

    Michelle and Dave , I also think about both of you so much and know that life is challenging for yiu both too. Michelle, you love being out in the fresh air and pottering in the garden . I too enjoy this and it really helps our mental health. I hope that you , Dave , can sit in the garden and enjoy the sunshine for a little while each day . We’re all in this together !

    Sending love and positive thoughts to all my dear friends . ❤️

  • Hi all

    sorry I haven’t been on here for a chat , I haven’t felt in the right head space .

    now after change of medication for depression and emotion I feel so brighter

    I feel so positive hope it continues , everything else is still the same

    I really wish you all brighter days , I can t help chatting about different meds and your procedures as I don’t understand

    but I can be here to chat with things I do understand about ❤️

  • Lovely to hear from you Michelleanne, I'm really glad they've been able to sort you out a bit with your low mood. It's so important... I think it even impacts on my physical well-being. I'm feeling better too, yay hay... we can't say that very often . Always good to share, whenever, whatever.

    I'm thinking of you Audrey, you're such a strength here.. I get a bit from you, thank you. I'm sure you're not feeling strong at the moment... we're sending kindness to you and your family especially at this time.

    Dave, how's things? Thinking of you.

    Night night all.

  • Hi helen

    i think mental strength helps so much , I’m trying very much to listen to my body

    pleased to hear you feel a little better it all helps

    stay strong x

  • I’m so pleased to hear that the new meds are working and that you feel much brighter and more positive , Michelle.

    it’s so good to hear positive news. It brightens us all up . ❤️

  • Great to hear that you too are feeling brighter , Helen. Thank you for your kind words . ❤️

  • Hello everyone . It’s been a wee while since anyone was on here and I’m just hoping that you are all trundling along with no major hiccups .

    i know that you all have daily challenges and just want you to know that I’m thinking about you all- Michelle, Helen , Dave .

    i also hope Beaglegirl that you are getting through each day with a little light shining in . It’s still very early days .

    hugs to everyone . 🤗

  • Hello Audrey, thank you.

    I was thinking of you too... wondering how it's going. You have a lot on at the moment. I hope you're coping ok with it all, how are you? I hope they can process things quickly.

    I hope your daughter is still doing better. Is she in her own home again now with the children?

    I'm writing this in the ecp ward. They insist I stay overnight... silly really, but looking forward to being home again tomorrow.

    I myself ... I was noticeably better even after just the first ecp installment today, ... as Dave said, it breaks down fibrosis in joints, I could walk really well (not normal, better). I have new plasters ( a bit like very big, paper thin compeed plasters) and I'm getting used to them, workingout how/if they're an alternative. They're very expensive but the insurance pays... i can keep them on for a week. But as Dave knows, my very thin, partially open skin, isn't only happy with it.

    Generally things haven't changed. I'm curious about the contact lenses coming end of july.

    How are you Michelleanne? Is it gvhd of lungs? Is your chest better? How are you?

    I'll say night night here... I'm more active on Facebook now. I don't know how I can send you my contact there. Anyway, I'd better get to sleep. I'm here.

    Love to you three, and Beaglegirl too if you're around,


  • Hi all

    i hope you make slight improvements at least that’s moving forwards ,

    im not to bad , my chest is a lot better after taking these low dose of antibiotics , my immune level is still low , nothing they can do for me there , gvhd flare ups are so painful in the mouth and gullet

    I’m back to clinic next week so see what they say

    i really hope you all get some ease stay strong ❤️

  • Michelleanne, I was given some tablets/losengers for my dry mouth at the dentists recently. I only use one at night if I need it.(in the day I use mouth wash) I'm going to get some, they're over the counter, prescription free...called Xylimelts, only for nights. And Volon gel helped recently too, both mouth gvhd. The volon is disgusting, but I had a nasty bump in my mouth that was getting suspicious and they wanted to remove it. I applied the volon every night for a week or two and it went. What are your mouth gvhd symptoms? Have you got any tips for me?

    Love to all,


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