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2nd Transplant and my daughter is so ill



  • Hi Dave,

    I went to have my laser eye surgery today. Walking into Treliske bought everything back. Walking passed the isolation room he was in as I can remember him waving when I left out side. I’m adamant that he wouldn’t have got sepsis if he had daily GCSF. I’m beating myself as it’s the only thing I can do. If I’m to blame I cannot live with what I’ve done. I do not have any faith in the doctors at Derriford and they will never own up to the fact that this could have been avoided. I’m just constantly asking why? He would be here now I’m sure of it. Which is heartbreaking even more for me to comprehend 💔

  • Hi B,

    Firstly I hope your vision has improved for you having the laser eye surgery. Hopefully no more cataracts.

    The doctors would never leave a life and death situation in your hands. The purpose of GVSF injections is to produce more stem cells which in thier own right are quite useless. It is only when a blood cell needs replacing it copies its nucleus into a stem cell and then goes for excretion. In the case of neutrafils when stem cells are ready it can speed up replacement if your body is not worn out or too low too fight the process. It is normally the neutrafils that fight off invaders such as sepsis etc and as the body encounters something it needs to fight it makes a lot more neutrafils. After heavy chemo or a transplant they generally like your nuetrafil count to get to about 7. However under normal circumstances nuetrafil counts can say be between 5 and 9. If nuetrafil counts are high or higher it means your neutrafils are being produced and probably fighting something off. If your counts are a lot less than 5 it probably means your body is not making them very well or not enough and there probably are not enough to fight off anything. It sounds like the hospital were trying to ensure there were enough stem cells available with the injections but for some reason the replacement process did not happen or the body could not make enough neutrafils from the bone marrow.

    Anyway you were not responsible, unfortunately it was a failure in Martins body. Unfortunately all bone marrow / blood cancers ie leukaemiaa etc are failures in human body whereby the body produces blasts. Ie immature stem cells that do not mature enough to become useable stem cells and they keep replicating and take over the blood system with useless cells. This is why we have to have stem cell transplants from donors to replace the failing bone marrow.

    mot must have been hard going past the room he was in and remembering him in there. I have to admit I try to avoid any rooms I was in as I don’t really want reminding of the time. I find it difficult enough coping with the gvhd and keep hoping it will soon disappear.

    Did you speak to Anthony Nolan ? Were they any comfort for you? I only ask as they are generally more professionally trained and I guess can often help a lot.

    whatever or however you feel we are always here on this thread.

  • I know about everything you’ve said but it came down to he was neutropenic as the MMF drop his counts and if he had the gcsf from the Friday to Wednesday when the doctor said you neutropenic he would of had something to fight with and maybe no sepsis. No I haven’t managed to get hold of anyone as they might be fed up with me ringing. No my eyes are pretty rubbish at the moment I’m hoping they improve 💔

  • Hi B,

    MMF will not make you nuetrapenic by itself. I was on them for a couple of months and my counts were still relatively good still over 4 for nuetrafil. It just makes your body weaker but not normally nutrapenic. Many people who have had transplants and been on mmf and other immunosuppressants have got covid and managed to come back.

    unfortunately it seems that there was still something that was not good in Martins blood that was not producing neutrafils every well. I have to admit I was always worried when you posted earlier on Martins neutrafils were hanging around 0.2 or 0.8 I thought it was not good and hoped it would rebound. It was when mine were this low and did not come back quickly enough after a chemo session that I ended up in icu as I was so weak after all the treatments and it takes so long for the body rot recover. I am now 2.5 years out of transplant and my body is still recovering from the chemo, the transplants and gvhd. The whole transplant process is very body abusive.

    I hope as your body recovers from the laser surgery that your vision improves.

    keep messaging

  • Going out today was the most painful thing ever. I burst in to tears when a woman walked in with her husband. I’m so angry and bitter about everyone else. Why did it have to happen to Martin. There are a few others I’ve spoken to on FB whose husbands have had 2nd transplants and are doing fine. I’m so jealous of them and just want my life back and my best friend 💔

  • Hi B,

    you needed to get out of the house for a while. Change of scenery and take your mind off things for a little while.

    Many transplant patients are still at risk after a stem cell transplant as it could still relapse. It is a big thing to take on a new immune system. A lot of those after transplant are generally recovering for a long time after or suffering with gvhd or other issues. I am sure that many do not mention all thier issues to thier partners.

    I can imagine it very difficult being out and seeing couples together looking so happy and remembering You and Martin. It is good you are remembering the good times together.

    I sort have this to come although my situation is not the same as yours. My wife left me when I got gvhd when I was so hopeless. I never imagined that that would happen and it left me with a big whole in my life however r not quite the same as you as I don’t think we ever shared the strong love you both did. Again I think you were so lucky to share something so strong. I can imagine that when people saw you and Martin together they were probably so envious. You need to get all hateful emotions out your head such as anger and hate as they will consume you and make you hurt more. I know for now you probably want to hurt as such strong pain often comes from such strong love.

  • Hi beaglegirl

    i wouldn’t google anything , I think that it would make you tick more , you need to think of the good times , the love you shared , ii ts not your fault things happen , the dr would have done everything for him and so did you please think of the good times and stay positive ❤️

  • I just feel so alone. I keep going over and over in my head why didn’t I just say to him don’t take the MMF as he was only itching and why didn’t I give him the GcSF. I’m going insane with thinking that I’ll never see him again or give him a hug or just look at him. It’s killling me the pain and wouldn’t not wish it on anyone. I’m sorry I keep saying the same things but I just don’t know what to do. I might come off the forum as I don’t want to upset people 💔

  • Hi B,

    You are not upsetting anyone. This is a forum for help and support. You actually help me take my mind off the issues I am having so you writing it helps me as well. It will just take time for you to accept what has happened and to take the next steps. The pain you feel now for losing Martin is so strong now but it will get easier. You made a giant step today by going out to your appointment. Over time it will get easier. You need to soon think about how you are going to do to move on. Martin would not want you to sit around feeling so low. He is probably looking down on you now and wanting you to cheer up a little.

    Are you currently working? Can no one where you work help you take your mind off what has happened? I know it is very difficult in winter as it is always so quiet and everyone tends to shut themselves away. Luckily spring is around the corner and even for me the time drags on to get to spring being housebound all the time at the moment. Maybe drive up to Plymouth and go on shopping spree. I always loved to go there shopping. However I found it funny that when living in Cornwall you ever hardly leave except to go to Plymouth site seeing or shopping. I would love to talk more about Martin but all I really know is that he had found his perfect partner, was worried about relapsing with aml, worked at Penrith abbatoir and hardly had a day sick and was always there for you. Did you ever go out much as a couple for meals or to friends houses? I know he went to quasars but did not really like it. Did he try out other places like tall trees? Bowgie? Penventon? Or did you spend most time at home or holidaying?

  • I’m self employed so it’s only me. Some of my friends are messaging me on FB but I don’t want to speak to them. They have their lives with their kids and husbands. I haven’t got that anymore and I’m really angry. We only went on one holiday which was our honeymoon to Paris I drove there and back. It was after his first transplant so couldn’t go anywhere tropical. Didn’t bother me asking as I was with him. We mostly went to horse shows and always went to Run to the Sun as I had a 1974 Beetle we had done up. Martin loved motorbikes and always spent time playing around with them out in the yard while I did the horses. We liked going to Lifton Farm Shop for meals and especially going for breakfast in lostwithiel at Calageros. He did live in Falmouth and Truro for a while and went out every weekend in town. Wasn’t really much for Newquay apart from surfing and a Burger King. Apart from when he was at work we were with each other every minute of the day. To not have him around is **** on earth.

  • Your friends in fb I guess are probably aware of what happened and are probably concerned for you if they are genuine friends and not just fb friends. I am sure if you called one she would be happy to chat with you or meet up. I am sure she / he would be more than happy to leave any kids for a while to see a friend in need. I have done the same as you shut myself away due to the state I am in and it does not really mentally help. I really hardly speak to my family as I don’t want to go over how I feel as I am also so down although mine is about my health as my walking ability does not improve.

    My sister had an old beetle years ago when we lived in Lostwithiel but I was never keen on the colour as wax bright orange. It was always reliable though. A break away abroad may help you give you time to think about what you want to do and how you can best remember Martin and maybe think of him there with you.

    I have never heard of Calageros in Lostwithiel in must be new is last few years. Where about is it situated? Hopefully one day if I get this mobility Bach after my gvhd dies down I maybe one day be able to visit it. Today though I am the farthest away from that dream as my mobility is not very good a bad day it it affects my mental health greatly some days I sometimes wish I was not here as it is just continual suffering with no improvement.

    Paris. Lovely place to go I loved it there went a few times as also takes such a long time to see all the sites and loved the ambience. I loved the boutiquey streets near below the sacre cour and also monte mart next to sacre cour where all the artists were.

    I guess when you are feeling so upset I guess it is so difficult to work. I guess for this reason I guess it is good for you that you are self employed. However don’t let your work suffer too much as it will affect you if you don’t try and hold it together. I do understand it must be hard for you. If you ever want to voice cat I am here. If you do just ask.

  • Hi beagle girl

    you are not upsetting anyone on here , we are all on here for help in someway , I agree you need to get the angry feeling out any way you can as you won’t heal, I never felt angry at my diagnosis just worried that I would die and leave my family , I’ve told my husband that I felt so lonely as I was in hospital on my own as it was in the beginning of covid and couldn’t have visitors , can you go and talk to your gp , they might be able to help ❤️

  • Hi Beagle girl

    its such early days and your emotions are all over the place . There’s not a right or wrong way of how to act and what to think.

    please give yourself time and don’t judge yourself or others .

    I think you probably can feel that this group of friends care about you and are here for you. Chat to us when you feel like doing so and don’t chat when you don’t feel like it.

    Time will never properly heal your wounds but it will help you to eventually accept what has happened and never forget the love that Martin and you had for each other. Xx

  • Dear Beaglegirl,

    These panic attacks, ifs and buts and physical reactions are very sadly part of acute grief. You are in the initial, very intense phase of grief right now and it will be overpowering. It won't always be like this.

    Perhaps you could research phases of grief so you know what to expect and can understand what you're in.

    Go with what feels best, you are not going crazy.

    Much love to you and the gang,


  • Hello Beaglegirl

    From what I understand, the what ifs and panic your experiencing are sadly important steps which can't be got round. They are part of the healing process after your loss. You have to go through it,.... but it is a process you're in... I wonder if there's anything you can do to ease this terrible journey you're on. I do so wish I had a magic wand. Does it come in waves or are you in permanent anxiety, panic? I'm thinking of you Beaglegirl. Are you eating? Do you have food in? Can you pay someone to come by once a week to do a bit of washing, clean a bit?

    We're with you in that very dark place.

    Much love,


  • Hi Michelle,

    Im constantly in panic mode. Last night was horrific. I couldn’t sleep. The night terrors were so scary. All I wanted is Martin to talk to and he would have given me a hug and said it’s alright go back to sleep. I really needed him at that point . I had to get out of bed as I was shaking and sweating which has made me worse as I burst into a fit of tears as I hugged his jackets in the back of the door. I really did panic this time and wasn’t sure what was going to do 💔

  • Hi beaglegirl

    im so sad to hear your pain , I really do think you need to speak to someone , who is trained in dealing with grief , our friend got a teddy made in her husbands clothes , and she hugs that and talks to it , and it has his aftershave on , please call your gp and see if they can help you ❤️

  • My GP offered me diazapam which I cannot take due to my eyes. I’ve tried Cruz bereavement and didn’t find them helpful. They just kept telling me to eat and have a bath over and over again.

  • Martin was the only one I could speak to about anything and he’s gone 💔💔

  • Hi

    I still think you should go back to your gp and ask for a grief counselling face to face have you got friends you can talk to or family , you could stay with , or stay with you until you get on your feet a bit ❤️

  • I don’t have really good friends as I was always with Martin. The few I have message me and I ignore them as they are happy. My family are helping although I don’t feel I can talk to them. It isn’t Martin. I can’t stay with anyone as my dogs have lots of issues. My Jack Russell’s attacks people and other dogs, Dexter my beagle has seizures and the other beagle Gracie May is an escape artist. The only behaved dog I have is Mr Tetley 🩷

  • Hi, you should really contact them back , they might beable to help you if they knew Martin aswell as they have a common bond with you , try anything please ❤️

  • Hi Beaglegirl,

    I share Michelleanne's idea. You can share your problems about the dogs with friends or family. .. there are ways around these things, they're only practical, solvable. Problems are completely normal, you can share them with people. We are only normal people here in this little group... you can find good people near you. Sometimes we just need a push. We believe in you, get on the phone and try your doctors again, go through the list of bereavement support places.. globally.. Facebook, charities... uk, us.

    The hot bath wasn't helpful, ok, tell them that you need a different approach, tell them it's not working for you... that's ok, it's fine. They need and want to know that. With Martin you felt safe and you knew how each other work... other people are kind and want to help but they need to know what works for you and what doesn't. You are also on a painful learning curve at a time when it's the last thing you need. Remember communication is all we have.

    Thank you for communicating with us and letting us know how you're doing. We feel grateful that you trust us. Other people near you want to be there for you too... give them a chance.

    Love to you and the gang



  • Hi Everyone,

    I just wanted to let you all know I’ve spoken to Liam at Anthony Nolan this morning. It’s hasn’t made it any easier but for the time I was on the phone it gave me a break from the pain I’m feeling. We spoke of my issues with blame and even had something in common. We both have a Romanian rescue dog 🩷 I could speak to him for hours as he is knows what to say and how to listen which I’m finding some do not. I just want to take this opportunity to say I’m sorry for taking this thread over with my sadness as you all are going through so much. I know Martin would tell me to sort my **** out. I’m going to try harder and be someone he would be proud of. It seems impossible at the moment but my GP has prescribed me some medication that hopefully will help me sleep and ease the anxiety. I’m never going to accept the doctors did enough but I need to let it go. It’s hard for me to write this but in my head I know it’s right. Martin would t want me to give up he would want me to be strong so for that I’m going to try so hard. Love to you all. Goodbye for now xx

  • Hi beaglegirl

    pleased talking to Liam has helped even a little bit, you don’t have to say sorry , just wish we could say something that would help , stay strong and take each day as it comes , always here ❤️

  • Hi Beaglegirl,

    You're already someone he would be proud of.

    You don't need to be sorry about anything. We're here, as and when you want to ... the same for all of us, We're here for each other, and you belong to us too. Please don't feel shame or regret about anything, you have no reason to from our side... you haven'tdoneanything wrong. ... this is complex, messy, painful and totally normal, it's called life. It's ok.

    Much love to you Beaglegirl...... We're all in this together with you. Big hug.

    I'm glad you had a chat to Liam. It's good to know he's there. And the medication is probably helpful, even if you don't use it.

  • Dear Beaglegirl, I'm a bit worried about you. Could you just send a sign of life... no need to write, just to knowthat you're still with us. Your goodbye worried me a bit.

    Sending you love


  • Hello Everyone

    im thinking about you all and know how challenging each day is for you all, sometimes more so physically and other times emotionally and sometimes both . This is such a lovely wee group and its wonderful how we all try to support and encourage everyone else .

    Beaglegirl, you’re going through the most horrendous time and the next months will be the hardest . I’m talking from experience . You’ll never get over the loss of Martin but you will eventually learn to live with it. I find trying to help and encourage others is beneficial to me as I know that’s what Paul would have wanted from me . You can’t think this way at the moment but as time goes on , I think your thought process will change .

    sending love and positive thoughts to everyone . Xx

  • Thank you dear Audrey

    Night night x

  • Hi all hope you are doing ok

    ive been feeling a bit down , now I’ve tested positive for covid **** hospital app 😢, had a gp app about my mood she’s said to try some herbal boost powder , so going to give it a try it has good reviews

    love to you all ❤️

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