Life after stem cell transplant

hi,

This is the first time I have posted on this forum, but my nervousness is overcome by curiosity and hope. I had a stem cell transplant a long time ago now, it was after many rounds of chemo/radiotherapy. It was to treat non Hodgkin's lymphoma, and I am very lucky in that now I don't have non Hodgkin's lymphoma any more. So I am alive, and this is a wonderful thing, but my body has never recovered. 

This is not a moan about my woes, like I say I have life and that is a beautiful thing, I know I'm lucky, but I want to see how others cope after they have been given back thier life, but then discover that the body they have now is one that sometimes feels like an enemy rather than a friend. 

Im sorry if this seems a pessimistic post, I don't want it to be discouraging for anyone, but it is a relief to have a vent.

  • Hello, and a very warm welcome to Cancer Chat, Spang79.

    Thank you for sharing your story with us; I'm sure many people here will empathise with how you feel. I noticed a conversation recently on the forum about Fatigue, which I thought might be something you'd like to read. Please do feel free to join in with this, or any other conversations that are taking place - you're very welcome here. 

    Best wishes,

    Helen 

  • Hi Spang79, I had a stem cell transplant 21 months ago due to developing a rare form of leukaemia following chemo for breast cancer and a spell in ICU with severe sepsis, which very nearly killed me and wrecked my bone marrow. Its been a very rough ride and uncertain three years of treatment all round and its only in the last few months that I've started feeling vaguely recovered and that I am moving on from it all. Even now though, my platelets are low at around 60 - 70 and so I am being monitored by my consultant for this. My red and white blood cell counts are fine, which is more reassuring. Its not a perfect situation though. In reply to your comments, I don't think your body ever does get back to normal after this kind of thing. I'm nearly 50 years old now and so I very much doubt I have the same ability to bounce back from physical illness that I had even 10 years ago and breast cancer, severe sepsis, leukaemia and a stem cell transplant are definitely more serious and have a much bigger impact on the body than most other physical illnesses. However, I'm still alive and I am seeing my son grow up into a young man. I am enjoying walking my dog each day and I am back to doing the job I love at work. I am also enjoying food after three years of nausea and vomiting and I don't particularly care if I am slightly overweight these days, as I have looked like a skeleton for the past three years. I am enjoying riding a bike around town again, albeit an electric one now, as I am no longer strong enough to manage a hill on a push bike - and nor do I see why I should have to after everything I've been through. There are still days however when I wake up feeling shattered, aching and generally unwell. On such days I just resign myself to taking it easy and being nice to myself. I have a breast missing from the breast cancer surgery and as I am sick of the sight of hospitals and fear getting sepsis again, I doubt I will ever summon up the courage to have any reconstruction surgery to replace it. But, I am still alive. My advice to you on days when you are not feeling brilliant is to also view them as 'TLC Days'. Be nice to yourself. Eat whatever you fancy. Treat yourself to a small gift on Amazon and look forward to the parcel arriving. Rest and keep warm under a duvet on the sofa in front of the TV. Look at some travel brochures and plan a holiday, short break or day out. Read a book or watch a box set of DVDs. Go to bed early and acknowledge that your body has been through a tough time and that it is quite entitled to have a day off feeling the effects of this whenever it wants to. This is what I do now. We none of us know how long we will live. Whilst being treated for breast cancer, my friend found out that he had it too and died within three months. Others drop dead from heart attacks at no notice. People are unexpectedly killed in accidents and other disasters and atrocities in the world every day. My physical state is far from 100% now, but I am still alive and I appreciate each and every day I have. I hope this helps x
  • My 12 year old Grandson had ALCL and is just 60 days into his stem transplant.Its good to hear you are on the mend I have taken your post as a positive one and am hopefull for my Grandson after reading your post.I wish you all the best.x