My son died at 29

My son was 28 when diadonised with NH Lymphoma. We were told it was agressive, but treatable and curable. After 6 months of chemo the PET scan showed no reduction in the tumour. After 2 months of another chemo we were told there was little that could be done. In March 18 he was put forward for a potential CAR T trial. In April he was accepted, in May he had the cells extracted which were genetically modified. Because of a delay in the programme (the person ahead of him fell sick) the local hospital decided to give him another chemo sesion. Following this he fell ill and was in the MHDU. In July he was admitted to the hospital in London for the CAR T transplant, which regrettably didn't take. The hospital carried out further tests and said that he only had weeks to live. He wanted to die at home (Inverness) and special ambulance bought him home. 48 hours later he died. He was a very fit, active, non smoking, had the occassional glass of red wine with dinner, clean living, honest man. Never said a bad word about anyone and was a good friend to many. Not only was he a talanted wonderful son (won 2 gold medal awards from the Scottish Food Awards) but a very good friend to me. I'm absolutely heart broken and after the 5 weeks in London and everthing that has happened since am shattered. I don't know which way to turn.  

  • Hi i dont know what to say other than i am so sorry for your loss to lose a son must be the worst thing that can happen ivI' lost a grandson seven years ago and the love of my life 4 months ago all i can say is try and take it steady if you havnt had bereavment counciling i would recomend it the local hospices do it try ringing its free and it realy helps as the councilers have great expierance of all types of grief .there is allso the cruz bereavment helpline free number you can just chat and they can give you advice theres theres the McMillan and marie currie helpines you can talk to nurses if you have any questions .theres no real answers to cancer why how its indiscriminate .there will be others that come along with more experiance than i so please keep talking ive found that talking is the best therapy this site the moderaters and a private friend i have here have been a life saver as like you i was totaly lost so once again ime so sorry .paul

  • Hi and l wish I had words of comfort ... Cancer has no compassion ... It doesn't care about age, or how fit or frail we are ... There's no making sense of it, there is none ... To me loosing a child of any age is the crulest pain we feel ... My heart goes out to you ...a part of us dies with them, and a part of them lives in us too ..  he is safe now, tucked up in your heart ... You carry him there and one day you will be with him again ... That cord that joins us mum's to our baby is always there, just invisible ...

    Sending you a big hug from one mum to another ... Chrissie xx

     

  • Hello Chrissie Thank you for taking time to respond to me. Thinking on it, you're right cancer doesn't care about the hurt that it causes or who or when it picks on. Actually I'm Leigh's dad. My wife was always paired with my daughter so we two were left together and that's what formed the bond. When he went to London they needed the person who knew him best so after discussing it with my wife and him we agreed that it should be me. We were a bit of an oddity as most were partners/husbands/wifes or Mums and children (young and older), so dad and son was different. I cared for him and would have given my life for him. When the trial failed and he was told he only had weeks to live he did say that he'd had a fantastic life and that I'd done everything for him, but I couldn't swap places with him and as much as I wanted couldn't make the trial work I couldn't. I told him that people say that we come into this world with nothing and leave with nothing but they're wrong. I said that he'd leave with all of my live (and his familys) and that will never die and although over the years we'll be forgotten the love between us will remain for ever.  My life stopped on 6th August and I can't wait to be with him again. As I said we were the very best of friends and he asked me to be his best man, because I'd always been there for him. I have no guilt in our relationship, I never let him down, just over whelming sadness that he's not around and the huge amount of potential that he had will never be fulfilled. Although he was married his wife didn't care for him when he fell ill and he spent a lot of time back home with us. I'm sad that the loyalty and love he showed her, working for a nice home for them and caring for her was never returned and as he said, felt second best. He didn't deserve that 

    Thank you for the hug.... one parent to another WarrenX

  • Hello Paulus, I've lost my parents and some friends but losing my son is killing me. I'm his dad  and he was my success in life... tall, handsome, intelligent, enjoyed what he did in life, a good friend to many and well liked, but he was always loyal to me. I think that I need councilling as I'm going out of my head. Not because of any guilt from our realtionship which was absolutely fantastic but at the huge void caused and sadness. He offered so much and had so much to give, that I feel so sad that was so cruely snatched away from him. Thank you for responding. Warren

  • Hello warren i have a son about that age .i canot imagine what you are going throes but i know that its its awful my wife died less than 4 months ago so i know what grief is .yes your right you can get ciunciling from your local hospis they have so much experiance were realy helpful but at at first i though this isnt helping but over the months ivI'noticed it is . So yes your right counciling is a good idea. P

  • Hi Warren...

    I read that with a lump in my throat and tears ... just to tell you a little of why I empathise so much with your journey , so forgive me for telling you my journey ..

    I had 2 beautiful boys ... I never knew I could love so deeply, and through their lives we are connected by that invisible cord they cut at birth ..

    My second son was the so gentle, caring, and he took life's knocks with never holding a grudge and forgave everyone ... at 14 he was diagnosed diabetic .. he faced a life of blood testing 3x dayley injections.. we had to learn how to balance his diet, feet in case of infection .. eyes for deterioration.  I heard about amputation, blindness, etc ..

    I would sit outside his bedroom all night to hear him breathing .. I fell apart in trying to wrap him in cotton wool .. never once did he moan or cry , he was and is my hero .. one day when I was sitting in front of him with tears running down my face .. he turned my head and said ... mum I can cope with this diabetes but not seeing you cry ... well I researched everything .. found ways to keep him healthy .. even started a club in our town for children with diabetes ..

    But a few times over the years he's had massive hypos .. one time he fell, cutting his head as he went down, blood mixed with weetabix everywhere ... I was on my own, I had to give him his emergency injection .. phone the ambulance, open front door for them and get my bro on the phone to come over .. not knowing if he was still with me .. as I sat next to him waiting ... it was he'll and for years had flashbacks ...needless to say , l got him back .. and he's had a few more though not as bad ...

    He's 37 now, and he is amazing .. but every day I know I may get a call ... so Warren l have lived it in my head .. and I know there's no other love that comes close for our babies .... and l wish I could say it gets easier, but I know I would die inside .. I can cope with my cancer .. and he has held my hand on my journey ... but could I go on without him .. honestly l don't know .. but I'd hope I would do something, change something to help others .. 

    I find great solice on here .. trying in a little way to honour my mum ... but I believe they don't leave us.. I have felt mum really close esp since my cancer diagnosis.. and you know he's still here, wrapped safely in your heart ... something of us dies with them, but a part of them live in us too .. 

    Always here if you want to chat, or vent ... I can't take it away but I can empathise ... and listen ...

    I've got another spare hug going if you want it, from one parent to another ... Chrissie

  • I've just seen this little poem and thought of you ..

             IM THERE INSIDE YOUR HEART....

    right now I'm in a different place, and though we are apart ...      .....     ....  

    I'm closer then I ever was, I'm there right in your heart .....

    I'm with you when we greet each day ...and when the sun shines bright ....

    I'm there to share the sunsets too... I'm with you every night ...

    I'm with you when the times are good ...and I'll share a laugh or two ...

    And when your tears, they start to fall.... I'll be right there holding you ...

    And when that day arrives that we are no longer apart ... I'll smile and hold you close to me ...

    FOREVER IN MY HEART .....X

  • Hello, I read your post the other day and could not bring myself to reply.  There are no words to comfort you just hopefully the fact that strangers reply to you and show they care might help a little.  It is the worst thing that can happen to a mother the loss of a child whatever their age.   All there is the hope that you have family and friends to be there for you, listen when you need to talk, stay quiet when you dont and hug you when needed.  There is a Maggies i believe at Raigmore hospital and there are people there that you can talk to and a counsellor if you want, the Clan people  offer similar help.  I am luckly that I have a husband, 2 daughters, a loving daughter in law but when my son died 19 months ago aged 35 and 10 days and 7 months after diagnosis of bowel cancer and liver mets, our world changed forever, we are trying to learn to live our lives without his physical presence and that is soo hard.  The fingers of cancer reach on into your family after death and we all struggle with the new "life".  Some people say it gets easier but each day when i wake up i think another day that i have not seen him and i dont think that will ever change.  You can read my story if you want .  Sending you love from one sad mum to another xxx

  • Hello, thank you for coming back to me, it does help to think that there are people who are prepared to reach out to others in the darkest of times. Although it wasn't clear from my posting I am Leigh's dad and although I know it more common that mums are badly effected in these instances, we had such a close bond that I'm taking the whole thing a lot harder than my wife. You see my wife and dughter do the girly things (shopping) so Leigh and me kept each other amused. But we were very different he was 'Mr track & field', I hated sport, he loved football, not just his team but knew all the ins and outs and coing and goings on most. Didn't matter where we were he met someone and was able to get into an intersting conversation, I was alwys to akward and reserved. He had a lot of friends, I have very few and really was only interested in him. So losing him in such a dredful way, has not only been very hard  (why him, it's so unfair: he'd so much to offer) but I've also lost a good mate. Yes he was married and had a young daughter but whenever we had a problem we always contaced each other first. So I have a huge void everywhere. I think it won't get easier but perhaps just get more used to it. You're there, experiencing it everyday, from your own sad experience. This has ruined our lives and I feel that everday I'm moving closer to the cliff edge. I kown that when he died he was more worried about us than himself although he didn't want to go, we had a beauthiful crystal vase in a broken box. His passing was horrible  and that upsets me on top of everything else. I'm going to contact Maggies at Raigmore because at the moment I feel more ill each day. I'll take your love not under the pretence of mum to mum but parent to parent. WarrenX 

  • Chris thank you for the poem. I've printed it out and will carry it with me.

    The problem is this has knocked my faith so feel that I've lost him forever. I know he needs time to feel his own feet and let is body heal before me can venture back. This was just one journey that I couldn't be with him although I was holding his hand when he died. At hospital whenever the nurses or porters had to move him, because he was in so much pain always said 'my dad will do that' and I did. ThI'm smaller than him and the nurses would say are you ok are you managing. Truth was I got an inner strenght and moving him was never a problem. When he died the district nurses came in and offered to wash and change his clothes. They laid him on the sofa (which he hadn't been able to do for 6 months as the tumour was in his back so always slept at 45 degrees) so I knew that he was out of pain. Later I knew that the undertaker needed to come as it was getting hot outside so I said Leigh sorry you've got to go I'd like to keep you here but I do have to be practical. I don't think this is one lift that I'm going to be able to do, but I'll be here. (I wasn't going to ask the undertaker because if they'd said that I couldn't lift him that would have upset me to much). When the undertaker arrived the one in charge said would you like to help move him, so I did. It's as if Leigh arranged it so we both got want we wanted. I pushed him out of the living roon, helped him down the front steps and saw him into the collection car.  That made me feel as if even at this late stage I hadn't let him down. Things like this help.