Hello!

It looks like you're new here. If you want to get involved, click one of these buttons!

Howdy, Stranger!

It looks like you're new here. If you want to get involved, click one of these buttons!

Hi everyone,
Following information from UK Government and the publication of NICE guidelines, we have updated our advice on the coronavirus for people who have received or are waiting to receive a stem cell transplant to treat their blood cancer or blood disorder. Read our coronavirus guidance here: www.anthonynolan.org/coronavirus

Long Term Survivor

My story starts in 1987 when at the age of twenty I was diagnosed with ALL. I had been feeling rather under the weather for a few months and found cycling into college becoming rather tiring.and friends and family noticed I was looking rather grey! To have such a serious illness diagnosed at the time felt like a huge steel door had been slammed in my face and moreover very frightening. At the time I remember asking the registrar at the Royal London Hospital how long I had to live, the answer being ' How long is a piece of string!'. To cut a long story short I achieved an early remission but was told that given my age my chances of survival were better if I were to have a bone marrow transplant. As I had were no siblings that were a match and non on the donor register it was decided to try an auto graft as my bone marrow was in good enough condition and there was just enough of it; I therefore became a donor and recipient. In those days everything was aspirated from the bone marrow, not just stem cells, as such it was quite a long operation- four hours in my case, and for a few days afterwards felt as if I had been kicked repeatedly by a horse in my hips and sternum. The transplant went ahead and after six weeks in isolation and numerous infections I was released back into the community. Of course I have had problems too numerous to list here and I still have to deal with the long term side effects of total body irradiation and mega chemotherapy but I am still in the world of the living. I went on to compete my degree and post graduate, got married and I now work in music education; we have even managed to have our own children (twins) albeit with some help from UCH (another very long story). I still go up to Barts (haematology no longer at the London) once a year to see my consultant at the long term survivors clinic and continue to keep busy.

My heart goes out to those of you who are at the beginning of your treatment or in that limbo stage after transplant when you are so anxiously playing the waiting game and praying that the nasty cells don't reappear. It is tough, but hang on in there, if anyone had told me at the time of my treatment that I would go on to marry a beautiful woman , have such wonderful children and live a normal life I would never believed them.

Comments

  • Hello Raymond and welcome, yours is indeed an interesting story and I am pleased that you appear to be doing so well after such a long time since transplant.
    I think we are all experiencing different challenges post transplant and it is helpful to hear a story like yours and hopefully it will give members some encouragement that things can improve.

    I'm just over 2 years since transplant from an unrelated donor, I was diagnosed with MDS, there have been lots of ups and down but all blood counts are good and up where they should be. I don't have the same energy levels or fitness as pre transplant but I' am pretty well back to normal provided I don't overdo things, like you it's the effects of chemo.

    I hope you keep in touch with the community and thanks for sharing your story.

    Best wishes

    Peter
  • Thank you for your reply Peter. Glad to hear you have reached the 2 year milestone and hope you had a little celebration. My then future wife and I went out and had a pizza to celebrate I seem to remember. It does all start to get easier as time passes, it's not that you forget the worry and the bad days, one merely forgets that you can forget and it all just becomes part of who you are.
    Best wishes
    Ray
  • Raymond, it's fantastic to hear that you are a long term survivor, particularly as I am only 2 years out from being diagnosed with ALL, the same as you. I had my transplant in January 2013 and it sounds like it was much simpler than yours and no more complicated a procedure than a blood transfusion.

    Thankfully the treatments seem to have got less onerous and the punishment on the body is much less so I for one am thankful for that, though it was still a punishing process. I hope the research continues so that those that follow us have an easier journey through treatment and better chance of long term survival.

    Thank you for sharing your story and I hope to be celebrating the same degree of longevity in the future.

    Best wishes,

    Steve
Sign In or Register to comment.