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2nd Transplant and my daughter is so ill

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  • Hi beaglegirL

    lm so sorry that that you are struggling so much. I know that there’s nothing that any of us can do to take away your pain but I’m glad that you are reaching out as we all want to help you in any small way.

    we’re here to listen and try to be with you through this painful journey. People kept telling me that I would begin to accept the loss of my son even though I would never stop missing and living him. It still seems such a mountain to climb and you are just at the beginning of the climb.

    youre doing the right thing in reaching out to us and I hope that it helps just a tiny bit to know that we’re all here for you.

    sending love ❤️ and all the strength that we can give .

    Audrey

    Liam_at_AnthonyNolan
  • Hi all,

    Michelleanne, you poor thing... 10 days is a very long time. It will eventually pass. Patience maybe isn't the word... try just to be in the now and get through each day the best you can. Sounds like a nasty version. Hold on tight, it will pass. I agree with everything Audrey has said. You are so kind and supportive to us all here, so strong. Say all those things now to yourself... even out loud if you can. It's one of my meditations... Sounds balmy, but maybe it'll help... we'd say them to you if we could be with you.

    Hi Beaglegirl, I'm still up for a little while if you want to write...

    ... . Much love to you all,

    Helen

    Liam_at_AnthonyNolan
  • Hello all,

    Audrey, I spoke too soon.... I was brought into the clinic in an ambulance with the emergency doctor yesterday very early. It's dawned on me that they're being very vigilant with your daughter. The fact she's in hospital so often shows how vulnerable she is and therefore they're being very careful with her.

    I guess It's one of the major issues of being immunsuppressed.

    I have a virus RSV, which is harmless for the majority, and gastroenteritis with a fever, ... the reason for me being admitted. Hopefully off home tomorrow. I was in really bad shape but with IV fluids, nacL , electrolytes etc, and sleeping round the clock, I'm doing loads better.

    It was terribly frightening for my family. They're so helpless.

    I'll be off here

    Much love to you all

    Helen

    Liam_at_AnthonyNolan
  • edited February 14

    I've been struggling, I'm a bit worried this could be setting of some new gvhd, or making mine worse. I lost my positivity this afternoon.

    Thought of you all. Alison, what a hero you are and what a hero Martin was, Audrey, you and your daughter, Michelleanne, your endless chest problems and gvhd, Dave, your endless stuggle with gvhd(... I read a bit with you on Facebook. I hope the massage helps a bit. )

    My eyes are getting worse, mouth too, feet are not changing, not improving- I can bend my ankles forwards a bit now though. I guess I'm just still poorly, temperature.

    This , our, whole thing, gvhd is sooooo horrible.

    The young nurse said it's not superstition that positive people live longer, she sees it herself. She was very sweet to me. I'm sending the message to you.

    I think I need to get home and off the IV.

    Love to you all

    Helen

    Liam_at_AnthonyNolan
  • Hi helen

    sorry to hear you are struggling , we are all vulnerable , keep positive and strong with the help of your doctors you will get there , have faith in them aswell as yourselve

    we all struggle , look at how far you have come take care ❤️

    Liam_at_AnthonyNolan
  • Hi Helen

    i am so sorry to hear what has been happening with you. It sounds so similar to my daughter. She was also admitted with the RSV virus . As you say, nothing much for the average person with a good immune system but so debilitating and frightening for those who have a weakened or no immune system. I can understand just how worried your family must have been as I go through this every time that this happens to my daughter .

    its so easy for me to say but please try to focus on how far you’ve come . The gvhd is causing you such a lot of grief and sounds horrible. There’s no easy fix but I’m sure that your medical team will do everything to help ease your symptoms even though it must seem to be taking forever for you. The fact that you’ve been and are so unwell due to the virus will be making you feel even lower .

    we’re all here with you and will try to lift your spirits a bit .

    Dave, I know that you too have an endless struggle with your gvhd symptoms and I’m always thinking about you and hoping that with the help of your team, that something will be found that will help to ease the symptoms .

    Michelle, our strong, brave friend who constantly supports us all and is so uncomplaining. I know that you too are having a very hard time . I hope that your visit to the clinic was beneficial and has put your mind at rest a little .

    sending hugs to everyone . 🤗

    Liam_at_AnthonyNolan
  • We really do seem to be in this place together. My goodness, it's so helpful for me.

    Thank you Audrey for telling me about your daughter's admittance to the clinic for the RSV. It seems to relativise it a bit. Par for the course so to speak. I can't imagine what you're going through with it Audrey. And then your grandchildren on top. It must be like juggling on hot coals.

    I find it difficult to know how we're coping. But we are. Somehow. We're here.

    I'm back home. Even went outside to stretch my legs for a minute. That did me good. Shuffling along.

    Michelleanne, do let us know how it's going if you feel up to it.

    Night night all,

    Helen

    Ps. Dave, the deep massage sounds good.

    Liam_at_AnthonyNolan
  • So glad that you are back home , Helen.

    you’re right, we’re all in this together and all here for each other .

    i hope you have a good, peaceful sleep in your own bed tonight. Xx

    Liam_at_AnthonyNolan
  • Hello Everyone. I hope that this week has been a little better for you all.

    Helen, I hope that you’ve been keeping positive and recovering from being in hospital. My daughter had just had a week in hospital . It seems a repeated pattern of bad cough, high temp etc. Her lungs have been damaged with all the treatment and they’re doing another ct scan to compare with the last one Hopefully no more deterioration. Another biopsy on Monday so a bit of a worrying time .

    I think this time of year is challenging for you all. The weather and all the bugs that it brings doesn’t help physically and the long dark days certainly doesn’t help mentally.

    Helen and Dave, I know that you both struggle so much physically because of the gvhd and consequently it must pull you down.

    please remember that we’re all here for each other and we all care.

    ❤️xx❤️

    Liam_at_AnthonyNolan
  • Hello all, hello Audrey, Michelleanne, Dave, Alison if you're around ... hope so,

    So sorry to hear that about your daughter Audrey, She's in the best place, but such a shame. I hope they can get her temperature down. Is it viral or bacterial, the cough? A cough is so exhausting too. Say hello to her from me ... even though... :)

    Maybe she's home already.

    Unfortunately they were not to be persuaded with my ecp. My next appointment is 18.march. I'm struggling a bit. Feeling low and lacking any sense that I'm in any way in control. All a bit arbitrary.

    My eyes are bad again so I can't talk much, distracted with the pain. They want to fit me with contact lenses if it gets bad again. It's a 4, 5 hour wait in the eye clinic which is awful when I have pain. Dreading it. Don't even know if the lenses will be good. Last time they hurt then fell out.

    Oh dear ... I've had enough. It's late and I'm tired, hopefully better tomorrow.

    Much love to you all,

    Helen

    I'd been deregistered without realising it. Glad I'm back in.

    Liam_at_AnthonyNolan
  • Hi helen

    so sorry to hear are having such a rough time , hope they can sort something out for you soon

    stay strong you can ride the storm ❤️

    HelenSpeedwellLiam_at_AnthonyNolan
  • Thank you Michelleanne. I hope you're finding some peace. Much love

    Helen

    Liam_at_AnthonyNolan
  • Hey everyone,

    I hope you’re all doing okay. I just need someone to get this off my chest. It’s been making me feel sick to my stomach. When Martin was in the ward they thought he had a fungal infection so they gave him ambisome knowing he had Aki bad kidneys so would normally have fluconazole. Now reading up about neurotoxicity of this it states all the effects Martin had. I don’t think I know they’ve killed him and the thought of this is really taking me to a dark place 💔 sorry for the awful post but I’m just told to contact PALS! It’s not going to bring him back they’ve done this and they have taken his life from him and ended mine.

  • Hi Alison,

    good to hear from you and know you are ok. Although we understand you are still suffering the loss of Martin and will do for a long time to come. Sometimes laying blame somewhere helps us overcome the kiss or account for it as such a loss is so hard to get over. However by continually looking for blame and not accepting what has happened and you cannot bring back Martin is not helping you and tearing you apart. I think you really need to get some serious councilling to help you through this. The hospital will have done all they can to help Martin live and overcome his illness, they have nothing to gain by going down the wrong road. There job is to save lives. If you really want to Perdue this route of blame it it best you employ a lawyer specialist in medical negligence but I think it will cost you a lot, and I am sure Martin would not want you to go down this road he would want you to make the best of what t you have and not waste your time of looking for something that isn’t there. My mother has suddenly come on with severe Alzheimer’s and not got long I have just learnt, I can’t blame the medical profession for not knowing sooner so I can spend more time with her. Unfortunately life is what it is however long or short it is and we just have to make the most of it while we can. I really feel for you and your loss of the love of your life and wish I could do more for you. We are all here for you to try to help you accept the loss and to realise Martin will never be coming back and that you need to make the best of the time you have. We all go the same way in the end.

    Liam_at_AnthonyNolan
  • Dear Alison, words aren't helpful here.

    Your and Martin's loss is so painful and unjust. You're understandably in a very dark place. Nothing I say could help.

    I too am at the mercy of doctors who will make mistakes because they are human. Unfortunately and also fortunately for me I'm at a university hospital which trains young haematology oncologists... my latest doctor leads me to desperation ... obviously early on in his specialised training .... but we need doctors... they are human, they will make mistakes... but essentially they have our interests at heart... they give an oath to that to be able to practice. But it's not helpful if they're inexperienced and not part of a good team.

    I think money might also play a role ... I'm not privately insured so they may be trying to save money by reducing my treatment. Dave, for example has a poor quality of life because the government won't pay for a necessary drug. It's cruel, but it's the real world.

    I did sadly have dark thoughts recently ... they'd save money if they lost me. That might play a factor in their decision-making too. Such things happen in the real world. Maybe they'll decide to give up on me. It will no longer be in my hands. They decided to give me the stem cell transplant although I was recently told by my doctor that I was so far gone, I was not expected to live and they took a risk with me. I think he was looking for gratitude and recognition from me.

    You and Martin fought so long and hard. Letting go is now even harder.

    I don't know what to say ... I certainly can't say anything helpful because there isn't any way to help. I guess time and love are all that can help. When my time's up, it'll hopefully go quick and it won't be in my or hubby's hands.... when, how. I hope it'll be in the hands of a well experienced trustworthy doctor, but I think that's for the Story book and not real life. We're totally vulnerable.

    Dear Alison, I'm sure my words are not helpful, but it's just my thoughts shared for you.

    I have a request, could you give me a bit of feedback? I'd like a bit of dialogue with you if you feel you can manage. You are such a treasure and it'd be nice to feel a bit closer.

    ... but maybe it's just me being silly:)

    Much love to you and our lovely gang,

    Helen ... I'll just hit send ... I hope it's ok.

    Liam_at_AnthonyNolan
  • Hi Alison,

    please realise we are always here for you. I wanted to be totally honest with you and want you to come out of this a stronger person. I want what is best for you and at the moment you are really struggling and probably very lonely and your mind is going all over the place looking too deeply into things and finding things that are never there. My ex wife was the same she was in constant depression since being a child, never really worked, found nothing interesting in life to do so was always imagining things that were not there. I am also now like this, now I am off work with gvhd all I do is really either sleep or sit and watch telly and my mind plays on me and I look for things that are not really there or looking for fault why I do not seem to be recovering. It is because I have too much spare time and not fulfilling my time with something more positive. Ie a pastime, working, spending time with friends. You need to look forward now and plan where you or going now or you can stay where you are now looking for continual blame and making your own life more of a mess and also more unhappy. Which would Martin want for you? What do you want for you really? Continually thinking of you.

    Liam_at_AnthonyNolan
  • Thanks Dave, for your honesty, you give me strength.

    That's more or less where I am now. I do nothing, can do nothing, neglecting any contacts that are still hanging on, which is getting fewer and fewer. ... I'm getting better at Sudokus. They say to combat stress it's good to learn something... my learning was Sudokus. I'm not strong enough to meet people though, can't go to choir or gymnastics cos I'm suffering. I long to get the ecp back. I was doing so well.

    This is a horrible place to be. I had a real downer a few days ago, cried a lot. It feels more numb now, which is good. Numb is the only way to be in this. Acute feelings are just tooo much ... poor you Alison... a big long hug from us all... terrible.

    Love to you all and thanks again Dave. You might be right about the spare time, but what are we supposed to do when we don't have the energy for anything else. Acceptance and compassion. It's wearing thin. X

    Liam_at_AnthonyNolan
  • Hi Helen,

    I too am finding it very hard. Been playing sudoku for a long time while I am like this. Yesterday I felt maybe I was able to stand up for a little longer and my range of motion was very very slightly better, today things seem worse and the skin on my legs seems tighter. Seems always to be one step forward and then 4 back. It is sorry for the pun living ****. I want so badly to improve even at a slow rate. I know it is possible as I see others stories where they seem to improve, I want a purpose in life. We all struggle so much with this horrible disease although all our suffering seems to be for quite different things.

    I am hoping for us all we will soon have better things to come soon.

    Liam_at_AnthonyNolan
  • Thank you so much for YOUR kind words Alison.

    As I said to Michelleanne, I prefer to keep my focus here with our little trusting group at Anthony Nolan. I'm maybe not so good at spreading myself about. This group is very special to me and I hope it stays like that for a while longer. I'm sure it'll change at some point, but you're all very valuable to me.

    You're a darling WITH your posts Alison, all of them ... meltdown or not. If you apologise I feel like there's some sort of reason for you to apologise, as if we might need an apology, but there's absolutely no reason for you to apologise. We share, love and trust here exactly because it's safe for any one of us to have a meltdown. Maybe I'll be me next, and you'll be there for me.

    I don't know where I'd be without this safe, compassionate place. I really hope that you can let yourself share with us without any negative feelings from your 'old film' as I call mine. Thank goodness when I was in the clinic for the 9 months, a very good therapist said to me that she felt I had people around me who loved me, but I was living in my head in my 'old film', (a place of shame and negativity). It was the message that turned me around. I work at living in the now and remembering that those around me .. my family .. love me regardless of what's going on in my head, they want me to feel safe with them and share if it helps. We are those people for you at the moment Alison. Whatever is going on for you in your head , is not here and now. We love you just the way you are, whether you believe it or not. Now that feels good to write ... because I know it's true for me too.

    It won't always be like this Alison. But for now it's ok. it could be worse .. difficult to imagine how, but it could be.

    I hope I'm making sense.

    I'm happy for you to DM me if you need to. I prefer to keep to the group. If anyone from outside wants to read our posts, they're welcome, it's all totally human and I think we're great, warts and all.

    Better get off here,

    Love to you all,

    Helen

    I'm just going to have to hit send again... be brave Helen:)

    Liam_at_AnthonyNolan
  • One of my favourite quotes from the actor Robin Williams:

    "A friend is someone who listens to your bullshit, tells you that it's bullshit, and listens some more."

    That's one of the great gifts of this group. You keep me in check, night night. X

    Liam_at_AnthonyNolan
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