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2nd Transplant and my daughter is so ill



  • Hi dave

    im so sorry to hear , you wife is not with you

    that is awful , I can’t imagine how that feels

    maybe talking to someone will help put things in prospective I know it helped me and it give me peace of mind

    I don’t want to know what’s going to happen in the future , I live in the present otherwise I worry

    you will get through this we all will , maybe just not like we were before , let’s show people what they are missing I have lost lots of so called friends and family through all of this , now I know talking to my councillor it’s there problem not mine

    keep strong & take care always here


  • Good night all, I just popped in to copy the name of the...Rituximab. I'm hoping it'll help. I wish you could get jakavi on the nhs Dave. The staff are fantastic but they don't make financial decisions. I'd love to send you some Dave, only joking ... I bet it's all been tried.

    I'm glad you experience the good care of the nhs Michelleanne. It's certainly an excellent system. But just like here in Germany, the health service needs much more money. We cost a lot .. LOL.

    Here's hoping your daughter continues little steps in the right direction Audrey. Wonderful she's got the boys. ... and you. ...that you've got each other.

    I wonder what this is doing to us emotionally. I left hubby just before my diagnosis. After 8 months in the clinic I moved back in and let my flat go. We're doing really well thanks to a therapist in the clinic back then and a therapist locally. In the clinic she just told me, I'm in the now and not in my old film, neither are my family. It was a very memorable moment. I had put them through he'll, cutting hubby off when suffering. I hope I'm not over sharing. I realised what she meant and what I'd been doing. We don't know where life is taking us. It's cruel too. But I get a good feeling here. It feels like we're level headed in the face of all this. I bet there's more misery in the local supermarket car park than here.

    Dave, I've tried sitting yoga on you tube , which was good. And I wouldn't be here without bbc sounds app. I've also checked out stuff for someone in England with disabilities, they offer things which could be interesting. Have you got a wheelchair Dave?. I got one , hopefully on prescription, this week.

    I also have a playlist on spottify called dance therapy. I can wobble to it holding a chair. I have to smile ... thanks you three.

    Much love


    PS. I'll let you know about the rituximab. Let me know if you get anywhere with it Dave..

  • Hi all

    helen I think this illness to effect emotionally just as much as our mind and body

    it’s a very big change to our lives ,some people manage better and quicker than others

    I glad you feel comfortable to talk about things it’s as good as therapy lol and if it helps us all do it

    audrey you have been through a dreadful time hopefully now you and your family will have a happier time going forward , how’s you’re daughter

    Dave you can share whatever you feel comfortable with as long as it helps you


  • Thanks Michelleanne,

    My illness has brought us much closer as a family , through a rollercoaster from ****.

    I just spotted your post from 21.5 and I totally agree. It's hard though.

    I have to be in the now too. My brain is unsure in the past and also plenty of places I don't want or need to go to there..and the future is "no mans land", I can actually even get annoyed with the idea of hope.

    I asked today about rituximab Dave and it's apparently not prescribed for my skin problem. I'll keep at it though, I wasn't convinced.

    Much love to you all, you can picture me, I'm lying in my clinic bed with my jeans and top, with the window open,...plenty of time for pj's. There's a Building site over the road but thankfully quiet. I can hear the birds. My direct neighbour is nice.

    I'm with you, thinking of you, thanks for being there.


  • Hi helen

    pleased to hear it’s brought you all closer as a family , it has with us also , but sometimes a feel lonely don’t know if that’s with 8 months in hospital

    hope you will be home soon keep enjoying the birds singing

    keep safe and take care ❤️

  • Hello everyone . It’s lovely to read all of your texts and it’s so good that you all feel comfortable enough with this group that you can share whatever you would like to say.

    I can see ( although probably don’t fully understand ) just how much my daughter has suffered emotionally as well as physically. All your lives have been turned upside down , as has mine in a different way, and I think all we can do is live in the present. I try to look around at the green grass, the blue sky and appreciate the caring people in my life .

    I also appreciate all of you, as you help me to understand some of the feelings as well as the physical symptoms that you are all going through.

    Sometimes it is hard to take in that I have recently lost a son and my elder daughter has such a fight on her hands. However, with all your help, I feel positive that things can get better . Life will never be the same for any of us but that doesn’t mean that it can’t be good .

    sending love and positive thoughts to my three amigos. Xx


  • Hi audrey

    lovely to hear from you

    I totally agree with what you say

    it’s so hard for everyone patients and loved ones alike

    I can’t even imagine what as a family you have been through with loosing you’re son then you’re daughter I don’t know hope you have coped I’m in awe of you 🥰

    I think everyday of my happy place even on a bad day , it’s what gets me through it .

    i know it helps me this group so much , I feel at ease and happy talking to you all

    i feel so humble that you all want to share things too

    take care ❤️

  • Hi Everyone , sorry to jump on this post. Hope you are all doing well. I’ve just seen Auds that your daughter has been up and down after a 2nd SCT. My husband has also had a 2nd sct in No. 22 Would you mind me asking what your daughters levels were? As his has been slowly going down since April although he did get coronavirus which they did say was not Covid? Im just worried sick as I can’t remember last time as it was in 2005.

  • Hi Beaglegirl, I can't help with your question, but corona, covid..?

    Two months ago I was overnight in the clinic on the blood Cancer ward (only for the night for 2 day ECP, I'm in remission). A sister came in and said, don't be surprised when we come in fully covered, hair and full body cover for hygiene, we've just found out from your blood sample that you have corona, but not covid. They said I wasn't to worry.

    I didn't "get it". A bit like your hubby. I just need you to know, it lead (I think) to a gvhd flare up which I'm still suffering from now. I hope at some point to get stable again, but it's taking ages. My blood results are fine apart from thrombozytes 3x too high, but they say it's from the gvhd itself.

    I wish you luck on your info search Beaglegirl. Your hubby's got a very caring partner:)

    Best of luck to you both

  • Hi Helen,

    Thankyou so much for your reply. that’s exactly what they said to us. They kept saying non covid!? He’s been re admired this morning as his temp went to 39 and kept blacking out. They say it’s esbl. His platelets have gone up 57 but his HG has gone down from 93 to 82. It’s so hard not to worry about what it could be. He’s a fighter and although getting fed up with being in hospital he’s trying to re assure me bless him. I’m just so worried about him it’s making me ill. Hope your feeling better soon x

  • Hello all,

    I hope you're coping somehow David, Michelleanne, Beaglegirl, Audrey and your daughter, and all your loved ones.

    It's the holiday weekend here. Holiday greetings to you all.

    My open wounds are really challenging but I'm feeling positive today. My adult children were round.

    My poor brother in England, is struggling with lung problems but strangely it feels good and empowering to be able to help him, phoning, sending podcasts and such.

    I think the ecp is kicking in a bit, plus I'm taking plenty of painkillers.

    Much love to you all,


  • Hi helen

    its holiday weekend here , and the sun is shining the weather has been lovely for a couple of weeks , I feel in my mind very positive so I hope this continues

    still got all of my other problems , I’m at clinic next week so see what they have to say

    you sound very positive , hope this continues and you’re skin starts to improve

    hope all is well with you Dave , audrey and beagle girl


  • Hi Everyone

    Helen and Michelle - it’s lovely to “feel” the positivity in your posts despite all the challenges that you face on a daily bases . I think this cruel illness makes you all mentally stronger and Helen, it’s wonderful that despite what you are going through , you can encourage and be compassionate towards your brother .

    Beagle Girl, I’m sorry for the slow reply. My daughter was dreadfully ill after her second transplant and we were actually told to prepare for the worst. She was in hospital for over 5 months with one thing after the other going wrong. However, very slowly she began to turn the corner . This group kept me going, encouraging me , telling me that the medics know what they are doing and will adjust treatment to fit the patient. Her levels did drop and were very low but gradually they have begun to improve .

    I still worry and we are all living in the present taking one day at a time . Please know that your husband will be getting the best care and his team of doctors won’t give up. It’s so difficult for the loved ones of those going through the harsh treatment. I know that I just wanted to make my daughter well and it was the times when she was so miserable, missing her wee boys that made me feel even worse . Please keep talking to us . The people in this wee group have developed a strong bond and we really try to support and encourage each other .

    Dave, I really hope that things are getting a little better for you. If you can, please keep in touch as we all care about you.

    I would like to share something that happened on Saturday. My daughter’s two wee boys did a 1k run for Blood Cancer UK and have raised almost £2000.

    Anyway, I hope the sunshine is lifting everyone’s spirits and I’m sending hugs to you all.

  • Hi All

    we are here for all on this group , it is such a cruel illness and the recovery is very slow

    we have to take one day at a time and have faith in those that care for us the medical staff know what they are doing

    keep talking always here

    I know it helps me so much


  • Hi all,

    The med teams are fantastic, but always be vigilant. They made a mistake with me in February but have told me I don't need to be frightened of it happening again. That was the episode of abruptly stopping meds plus my infection which ended up with eye problems, lenses and morphine.

    Anyway, ...

    Wondered how your mobility is Dave? Is that new med helping? Afraid mines the same or worse. Found out that gvhd skin should be treated as excema. It's good to be able to look in you tube for tips. Might be helpful Dave.

    One useful tip, if affected gvhd skin gets wet, it needs moisturiser applied within 3 minutes. Only problem is , doesn't seem to apply to open wounds/skin.

    I'll get off here. Thanks for being there,



  • Hi Helen. I’m really sorry that you are still struggling. It seems to be so much trial and error until they find what works for you.

    Thinking about everyone and their daily struggles. Patience seems to be the key word, even for the loved ones of patients, as we so much want to see you all make good progress .

    Always thinking about everyone . Xx

  • Hi all

    helen I’m so sorry to hear things aren’t getting any better , hope they find something that will help I use a ointment that’s like Vaseline to wash and use as a moisturiser it’s the only thing that helps

    I also have drops for my mouth when that’s sore I’m still on all my meds they say maybe 5 years before they think of taking me off them

    Dave we haven’t heard from you in a while hope you’re ok ? I never look on the internet about my illness as it frightens me

    audrey hope all is going well , I totally agree with what you have said

    take care much love ❤️

  • Hi All,

    I am still here. Finding it hard as normal and I guess as impatient as ever and hoping for improvement after my last weeks infusion on Wednesday, however really it is too soon for results if I get any improvement at all. It seems such a long road.

    Hope you are all well. Helen you sound to be having a bit of a hard time like me. However it was good you had a visit from your son I believe the other day, and good of you supporting your brother when you are too also finding it hard.

    Audrey, It sounds like your daughter is still doing well and is strengthening. She has a long road to go but I hope she finds it not so difficult.


    I don’t know how you do it? You seem to manage quite well even with the issues thou have. I hope these get less and things improve.

    I am currently on my Ecp treatment and is nearly a year since I started it, not really sure if it is doing that much for recovery but I guess is calming my immune system down. Another Rituximab infusion next Tuesday so hopefully that may have results soon,

    Thankyou all for being there and for your concern. You do all keep me going.

    lots of love


  • Hi Dave

    it’s lovely to hear from you , I hope you get some ease from this treatment soon

    hope you start to have brighter days soon

    i feel I’m doing ok at the minute just do what I can when I can

    I still have very hard days but I try not to let it get me down

    take care always here to talk


  • Hello Everyone

    i think about you all a lot and know that every day is a challenge. I also know that you never give up and are so kind and caring to each other ( including me ) in this group.

    Helen and Dave, I really hope that you are both having some improvement of your symptoms and Michelle, I’m hoping that you are having more good days .

    It seems hardly anytime since my daughter’s last biopsy and tomorrow she is going for another one. She is dreading it as each one seems to be a bit more painful and quite an ordeal. I’m sure you can all empathise. im also feeling quite stomach churning, hoping against hope that the results will come back clear. It’s so hard not to get worked up and worried but I keep this to myself.

    Anyway, as always, I’m sending everyone love and positive thoughts .

    Audrey x

  • Hi Audrey,

    I am afraid I am not too good at the moment as things are not really improving for me and don’t really have seem to for over a year.

    I am sorry for your daughter having a biopsy tomorrow as I know it is not a very pleasant experience and as she says each one does seem more painful than the last. What makes it worse I know is what the results are. I am keeping my fingers crossed and praying for good results for tomorrow. I am off for my 2nd Rituximab infusion tomorrow and I am also afraid this will not improve my condition, and without some improvement I am struggling. I know Helen is also finding it hard with more pain in her feet and she has been at Ecp today and will be tomorrow but the relief Ecp gives is not immediate. Hopefully Michelle is doing better, Good luck for your daughter for tomorrow and I hope all goes well. My heart is with you both

  • Hi Dave and thank you for your kind words.

    I so wish that I could wave a magic wand and take away all your symptoms and health problems. Also everyone else’s as well.

    Helen and you are having a particularly rough time. I really hope that tomorrow’s infusion will help you, if not immediately then soon. Im also thinking about Helen having her ecp tomorrow and hope that this will improve things for her as well. You all have to go through so much and yet you are still here for each other and myself. We really are a wee team!

    I’ll be thinking about you tomorrow, Dave. Please keep in touch. Xx

  • Hi all

    dave I’m so sorry to hear you are still struggling ,I hope this round helps you 🤞it makes me sad to hear you sound so down , I would try and have a serious chat with some

    helen I also hope you get ease with things soon it’s so hard

    audrey I hope all goes well with you’re daughters biopsy this is a very uncomfortable , painful proceedure

    I pray that it all goes well with good results

    im not doing too bad things I can cope with, pain in legs and swelling is bad have to mention it to gp

    thinking of you all keep strong ❤️

  • Hello all,

    Feeling a bit unsettled as usual after the ecp. It's depressing sharing a room with someone with not long to go. I usually take a while to shake it off. Today I'm doing my best at a bad job.

    Something I'd like to share from you tube, a 102 year old's advice to us all.. It's not about overcoming things, it's about getting through them. For some reason it feels comforting. I'm well and truly in it and am doing my best getting through. There isn't unfortunately an end to reach but I need to just hold on.

    The skin on my lower legs is leaking pretty badly and I now have morphine based painkillers for when its acute. The doctor reassured me, like Dave, patience and time. Thanks Dave. It felt better coming from you first, easier to accept.

    I'll get off here, ... a bit of desk stuff ... maybe I'll get one more beaurocratic step closer to getting my disabled parking permit. That'll be something to celebrate.

    Love to all, thank you for being there.


    PS. They have a new procedure here in Germany, instead of the very painful biopsy from the pelvic bone for the leukaemia check (which your daughter'shaving Audrey) , they now do the test here with a blood test. I feel a bit sceptical almost worried about it, but they are totally confident with it.

    Perhaps your daughter could ask her team Audrey.

  • Hi Helen

    hope you feel more settled soon , it’s not nice to share a room like that , you would think they would be on their own .

    I agree with that saying I feel like one day I’m so good then next day I’m back to feeling awful can’t win

    the pains and swelling in my legs are starting again mentioned it at clinic told to see gp and loose weight I was so frustrated

    we don’t have that here still the biopsy

    love to you all ❤️

  • Hi all., hi Michelleanne, Audrey, Dave and Beaglegirl,

    That sounds really annoying Michelleanne, "lose weight", argh!

    I'm interested to hear if your skin improves with the new meds Dave. I suppose I'm getting hopeful, never a good idea.

    I hope your daughter biopsy went well Audrey. I can just go right there in my mind's eye, lying under the sterile sheet waitingfor the procedure to start. I always sing when I have anything unpleasant done, ..only like a quiet hum," amazing grace". I find it distracts me and controls my breathing. ,and they like it too. I get good feedback from the doctors, which really surprised me.

    A couple of positive things ... My wheelchair is great. I did some geriatric gymnastics today. It did my head more good than my body. Can recommend it.

    I'm with you all.

    Night night, love


  • Hi all

    hope you are feeling as well as can be

    I was so annoyed because at the beginning she had no problem with my weight , wish I still had consultant led in instead of nurse team saw my g.p he said I have bad circulation in my legs and arthritis in my hip

    he said not surprising with what my body has gone through , I could be worse

    I can imagine it too I always go to my happy place in my mind and deep breathing , hope all went well with it audrey and she is doing well

    helen I’m pleased you have a wheelchair now hope you are feeling a little better even in your mind

    how’s things with you Dave ? Hope you are ok

    much love ❤️

  • I know what you mean about nurse doctor difference Michelleanne. Thank goodness there's plenty of "goodens." Reassuring to hear that from him. See, you're doing well!

    Very good tactic to go to that place of kindness and calm. I reckon their colleagues also see it in them. We all know it from all walks of life.

    I think I've got bad circulation too.. in my legs which makes the degenerating skin even worse. ...

    On that note, I'd better go for a little walk round the front room:) I've got a step counter which helps me.

    Glad you're all there,



  • Hi Helen

    it is a good job there is good ones,

    he is a lovely g.p trained in the cancer unit so he understands and is very compassionate and reassuring which is what we did at times I’ve being given compression stockings to wear for a couple of weeks see how I go

    I walk like that round the house and garden then sit and sit , but my mind is in a good place a happy place

    you seem much brighter in yourself helen hope it continues

    I look forward to these chats


  • I look forward to these chats too. It does me good to know you're in a good place Michelleanne. Thanks for sharing that.

    Love to you all


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