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2nd Transplant and my daughter is so ill

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  • Hi helen

    enjoy to the full whatever you do ❤️

    Liam_at_AnthonyNolan
  • Hello all, the dermatologist is quite convinced that I have severe scleroderma and not neurosis. I really quized her cos I'm quite frightened.

    She'll try and pull my dermatologist appointment forwards and she took photos to send them along with her diagnosis. It sounds like doubled up but she wants me to get another opinion.

    In a mild way it feels like good news cos necrosis is scarey. But my feet are still painful. I was there for hours too and missed another appointment. I just got back this afternoon.

    I hope you're all being gentle with yourselves, however rubbish your day is. That's my aim. Patience, ...

    Love to all

    Helen

    Liam_at_AnthonyNolan
  • Hi helen

    I hope they can get things improved for you

    I know what you mean about feeling frightened , keep strong ❤️

    Liam_at_AnthonyNolan
  • Thanks Michelleanne. Do you know more about your lungs?

    X

    Liam_at_AnthonyNolan
  • Hi helen

    nothing more yet , took more blood to check my percentage of donor and given low dose of antibiotics back in 3 weeks

    see what they say then ❤️

    Liam_at_AnthonyNolan
  • 3 whole weeks. Crossing fingers they can come up with something useful for you.

    Love

    Helen

    Liam_at_AnthonyNolan
  • Hi Helen

    let’s hope so , I keep my fingers crossed for you too

    ❤️

    Liam_at_AnthonyNolan
  • Helen, you are having such a rough time and I want you to know that I am thinking about you a lot. I know that you are in a lot of pain and it seems to be taking forever for them to get to the bottom of things - but they will and then they will start you on a treatment. You do so wonderfully well to keep going and the support that you give to others is invaluable. Keep strong, we’re all with you. Xx

    Liam_at_AnthonyNolan
  • Hi Michelle, you too are having a difficult time and I really hope that the antibiotics kick in and help to clear your lungs. I know that lungs can take a while to start to improve as my daughter went through a particularly bad spell with them. She still has a persistent cough but her consultant doesn’t seem too concerned.

    Like Helen and Dave, you go through so much and yet always have time to help others. I’m in awe of you all. Really hope that when you go back , they have something positive to help. Xx

    Liam_at_AnthonyNolan
  • Hi audrey

    hows your daughter doing ,

    my immune system has lowered not sure why so waiting for blood results I’m in a very low mood at the minute can’t be bothered with anything

    the low dose of antibiotics seem to be helping

    ❤️

  • Michelle, I’m so sorry that you’re going through this . No wonder that your mood is low.

    Please remember that we’re all here for you. You have been such a tower of strength to myself and lots of others and now you deserve some tlc until they get to the bottom of things and start a plan of treatment. It’s such a difficult illness with so much trial and error but the one thing that I’ve experienced ( through my daughter ) is that the medical teams keep going until they find something that helps .

    keep chatting to us . I’m glad that the antibiotics are helping and hope that you feel stronger soon.

    Sending love . Xx

    ps - my daughters biopsy came back negative and she’s 100% donor which is wonderful news . We’re not complacent and know that it’s a rocky journey but we needed this news as a lot going on re the trial etc for my son and everything that surrounds it.

    Liam_at_AnthonyNolan
  • Hi audrey

    thats wonderful news about your daughters biopsy , keep strong you are going through so much with everything

    I’m back under the consultant team now , which I’m so pleased about I have every faith in them

    you and your family deserve some peace sending lots of love and hugs ❤️

    Liam_at_AnthonyNolan
  • Hi Michelleanne, hi all,

    Michelleanne, Antibiotics are known to lower mood. It's not you It's the situation. We're all sending you our love and hope you can feel it. This phase will pass. It will change.

    My aim is to just to get through today... and that's my aim every day, nothing else.

    Auds, Dave, sending you my love too.

    Thank you Auds for your kind words. They warmed my heart.

    Helen

    Liam_at_AnthonyNolan
  • Hi Helen

    Thankyou that’s my aim too ❤️

  • Hey Everyone, I’m sorry for not replying as I haven’t been able to do much. Martin has been re admitted due to the same kind of problems as last time. He was doing really well his counts were going up, he started his ECP. However, he started getting confused and falling over quite a lot. He’s been in since last Wednesday as we were going away for the day but had to cancel. (Just one day and we couldn’t do that 🥲) however, he’s very distressed as he cannot remember our dogs names and where he is. They have done another lumbar puncture and said under the microscope they cannot see any leukaemia cells. So they are treating it as a virus but need to do another test that they tried last week but failed just to make sure there is no leukaemia. IM completely broken and really starting to struggle now with life in general. He cries every time I speak to him saying it’s back and he’s going to die which is killing me to hear. I have fallen out with my parents as I’m so angry with the world and don’t have anyone else to talk too. Where we go from here I don’t know. I’m going to see him tomorrow but I don’t think we will be any further forward. All I do is google Leukaemia and spinal fluid and his symptoms come up so then I start to cry and panic. I’m not really eating nor sleeping and I’m beginning to give up on life. I don’t know what to do anymore. Sorry for the really negative post. I hope everyone is okay x

  • Hi beaglegirl

    I’m so sorry to hear about your husband , you will get to do a day out just be patient , I know it’s easier said than done

    try and take each day as it comes and not rush things it’s a very slow process we all have different challenges

    I would try and not google as that might make you worry more

    try and speak to someone at the hospital maybe a McMillan nurse

    stay strong sending lots of love ❤️

    Liam_at_AnthonyNolan
  • Sorry to hear that Beaglegirl.

    Something that has worked for me when I'm in an acute phase is self compassion practice.

    It sounds like you might have to start being strict with yourself. Talk to yourself as if you're your own best friend .... say loving things to yourself, tell yourself to eat something, however little. The main thing is that you're loving to actively yourself. Your husband needs you right now and so you need to be as resilient as possible. Resilience comes through being loving to yourself.

    Sorry if this sounds hard but, yes, your situation is horrible, you are as good as helpless, reliant on the team, there are huge frightening unknowns in your lives. But all that said, acceptance is the only way through. I don't mean take everything as fine, it isn't. Accept that worry can't change things, you're doing your very best and more is not possible. Your panic, anxiety, sleeplessness, are all to be expected, it's ok, you're doing really well. This is a terrible time. To ride the waves remember what a wonderful, valuable person you are and how you are coping so well in an impossible situation.

    If you find it hard to be your own best friend's voice, then pretend that we are in your pocket talking to you. We're proud of you Beaglegirl. Maybe if you can start to relax a bit in a few weeks you might be able to make a little gesture of kindness to your parents. They're frightened too.

    I hope I haven't been too bossy. It was all meant in a kind way.

    Unfortunately I'm taking my opiate more often, only half the dose and only evenings, but I'm more or less immobile.

    All that said, I'm lying in bed feeling sorry for myself and thought... just get through the day Helen, you've just got to get trough the day somehow. And here I am writing to you Beaglegirl and that makes me feel helpful. I hope I am.

    I'll get off here, love to Michelleanne, Dave and Auds too. Thank you for being there.

    Helen

    Ps. There's loads on self compassion stuff on you tube. My guru is kristin neff.

    Liam_at_AnthonyNolan
  • Hi Beaglegirl,

    So sorry to hear about everything you are going through. My strong advice here would be to have a chat with the Patient Services team at Anthony Nolan - they have a helpline you can call and they are at least a very compassionate and friendly voice on the end of the phone. It sounds like you need that right now.

    Their number is 0303 303 0303 and they also have a Telephone Emotional Support service they can refer you to that might be worth looking into.

    Stay strong,

    Dan

    Liam_at_AnthonyNolan
  • Hello all,

    It's Saturday afternoon and I'm sitting on the terrace going through my phone. Monday in the clinic for the ecp again.

    It's nice to be outside even if never in the sun.

    I'm thinking of using my wheelchair to get out a bit. I haven't been out for weeks apart from physio, clinic etc. In car or taxi. Just to be under the sky would be lovely. I'll try and get out at sundown maybe.

    I'm thinking of you all.

    Love

    Helen

    Liam_at_AnthonyNolan
  • Hi helen

    im the same as you love being outside , I’ve haven’t been out for weeks apart from hospital and dr

    sounds a good idea using your wheel chair at least it will get you out

    enjoy hope all goes well at the clinic

    hope you are all ok

    ❤️

    Liam_at_AnthonyNolan
  • Hi All,

    Hope you are all in fairly healthy condition.

    Michellranne, hope your infection is going down and your lungs are starting to get better.

    Audrey, really good news about your daughter that she is slowly getting there and her biopsy results were so good.

    Beaglgirl, sorry your news was not as good, but I am sure your husband will get there I. The end, An sct is a very long ride, I have had lots of downs over the last 31 months and I still have lots that still need repairing and have not had a day out in all this time. We will get there eventually.

    Helen,

    You sound like me in it for the long haul. I really hope your feet are improving but from what I can ascertain it may take a long time a bit like my main issue.

    I saw a rheumatologist today about my mri, and I don’t have Myositis as such which in one degree is good news I have gvhd induced muscle inflamation and they confirmed fascia was involved. This is caused by fibrosis which is not always reversible that easily, although it looks like Jakavi/ ruxolitnib or rezurock sometimes can reverse. However both not available in England and it looks like rezurock has been turned down as well, so feeling really low at the moment.

    https://www.navlindaily.com/article/18968/nice-draft-guidance-rejects-rezurock-for-gvhd-over-economic-model-and-clinical-evidence-uncertainties

    Liam_at_AnthonyNolan
  • Hi all,

    Oh my... Dave, thanks for the link. It's absurd reading. It's got nothing to do with the price. It's infuriating. The text explains it's real value. Crazy.

    ...yes, in for the long haul. It's so debilitating and the pain is the worse. I want them to make me pain free. But this is the real world :(... Maybe in 10 years, as a 70 year old, I'll be putting my name down for a half marathon. Who knows, .. or maybe just twice round the living room.

    I've got a single room in the clinic today, nice. But then I realised they can't give it to private patients because the extractor fan is broken and never stops. But I'm good with that.. my win. Or maybe I'm on a list of regular guests LOL. My last room neighbour was mrs angry so this is like a holiday.

    I'm hoping your lungs are not suffering with gvhd Michelleanne and that it's 'just' a harmless infection which I'm sure they can treat with antibiotics. But I'm just thinking, if I get it myself, and who knows, I'll just have to be patient through that too, dread the thought. We will get through this, even if we're old friends by then.

    I hope Beaglegirl that the neurological problems are a passing problem and that he can recover. He's resilient to get this far, a fighter. But that's really hard to be patient with, very difficult and scarey.

    I'll get off here,

    Love to you all,

    Helen

    Liam_at_AnthonyNolan
  • Hi all

    ive got my clinic app next week so see what they say then , I’m taking preventative antibiotics low dose see how that goes

    I might need to go and see a immunologist

    we have more hurdles than a athlete lol

    we’ll get there soon hopefully having a private room does have it’s good points

    keep strong thinking of you all always

    ❤️

    Liam_at_AnthonyNolan
  • Hello everyone and I’m so sorry that I haven’t been around for a while .

    Firstly, I want you all to know that I think you are all so amazing, getting up every morning and ploughing through the day. You all have such huge obstacles to overcome but your inner strength and resilience will help you to eventually win through.

    Beaglegirl, I know that you feel broken and lost just now but please remember that you’ve been with your husband throughout his journey and although you might not realise it, he will be getting strength from your love and support . As a loved one of someone suffering from such a cruel illness, I know that it’s probably the toughest thing that you’ll ever have to do to be positive and encouraging when you visit. When my son was killed and my daughter was critically ill, during the visits, I had to put on the act of my life. Since then, my daughter has told me that these visits gave her the Will to keep fighting. It’s incredibly hard, but you can do it!

    Michelle, I’m sorry that you are still struggling with your immune system. My daughter is still going into hospital for immunoglobulin infusion every four weeks to boost her immune system. Perhaps your team will think about this .

    Helen and Dave - you are both going through so much physically and I know how hard each day must be for you but you are doing amazing to be getting up each day and to be coming into this group, helping, giving support and being such great friends to all. I think it’s a very good idea to wrap up and try to sit outside with a warm blanket, even for 10 minutes . Take in the fresh air, listen to the birds chirping and look up at the blue ( hopefully ) sky.

    Helen, my pain gets really bad and I take tramadol every day. I believe that if you need opiates then it’s fine to take them .it’s only if you abuse them that you’ll be in trouble .

    this is such a long text that if you’ve managed to get to the end- well done .

    How I wish I could wave a magic wand and take away all your pain and dreadful symptoms . I can’t do that but I can tell you how much I admire you all and count you all as very dear friends .

    ❤️❤️

    Liam_at_AnthonyNolan
  • Thank you Auds

    You're so kind, and in the face of all you're going through. A star.

    Your lines help me... don't worry about writing too much. We're all grateful.

    I might ask about the infusions your daughter's getting, for me.

    Have peaceful weekends all,

    Love

    Helen

    Liam_at_AnthonyNolan
  • Hi all

    hi audrey Thankyou , you are a true trooper yourself , I’m amazed how you cope 😘

    im very grateful to you all for our chats , I also think of you all as firm friends

    one day we’ll look back at this time as a distant memory 🤞we’re off pumpkin picking in the sunshine with the family then I’ll curl up and snooze afterwards

    love to you all take care 🥰

    Liam_at_AnthonyNolan
  • Hello you lovely lot,

    I was just lying on the sofa listening to a podcast from my favourite BBC radio 4 channel.

    It's about the values of doing nothing. It's good, positive listening but now I need to think more positively about my future because I have so much bored time. ...hmmmmm... let me think, writing, calligraphy, watching tv, sharing with you lot.... I bet there's more options I just need to get creative.

    I was called by Dr. Zeiser this morning... they're going to extend my ecp to 4 weekly. I think I'll ask if it could be 3 weekly first.

    I'll be off. Enjoy the podcast. ..link below..

    Love

    Helen


    https://www.bbc.co.uk/sounds/play/m001gx67?partner=uk.co.bbc&origin=share-mobile

    Liam_at_AnthonyNolan
  • Hi Helen

    sounds a good plan , you seem to be a bit brighter today hope this continues

    ill listen to that 😂

    ❤️

    UnknownLiam_at_AnthonyNolan
  • Hello all,

    Hello Auds, I recently saw someone's gvhd story with photoy on fb and I was struck by how youth played a role in their very very very long, but inspiring recovery. How old is your daughter if you don't mind me asking. If she's under 40 I imagine her body has a lot more resilience than post menopausal, after 50ish. I hope she's stable. .. and that you can enjoy some mum, daughter time with her. As well as the boys of course.

    How are you doing Michelleanne? Any news?

    Dave, how's your mobility? How's your mood?

    And Beaglegirl, any news? How are you coping? You're still on your epic wait. Big hug.

    This morning I discovered a new site on Facebook gvhd upside. It seems promising. I So often need a lift.

    Love to you all, thanks for being there.

    Helen

  • Hi helen

    no news yet I’m in clinic tomorrow , see what they have to say

    ive had no venesection because my haemoglobin is lower than it should be

    hope is ok with you all ❤️

    HelenSpeedwell
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