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edited January 2017 in Welcome
Hi All,
Wow, well I have just spent the last few hours in tears reading all that is to be read on this highly informative website. I think post my transplant 10 months ago I have managed to get to a place where I have shut the whole two years of treatment, including 6 courses of chemo a relapse and a stem cell transplant into a box with a lid on that I can only choose to open when I have to and recently get back to feeling alive and enjoying every minute of my life to the full as it deserves to very much be lived as it is wonderful.
The lid was firmly thrown off today reading and listening to all the honest heart wrenching, truthful tales about transplant life.
I refused to really cry when I was being treated as I saw it as negative energy and exhausting when I needed all that energy to be able to perhaps drag myself out of bed and walk to the ensuite bathroom!
May be now is my time to feel gosh have I really survived all that and reflection is a tear jerking thing.
Having AML (Acute Myeloid Leukaemia) isn't all bad. My strength of my friendships are now stronger than I could ever have imagined in my wildest dreams, as are the relationships with my extended family.
There can't be many times that your best mates get to wipe your **** or shave the last bits of your wispy locks off!!!
Also I appreciate so so much the beauty of the nature around me in a way that I always thought I did but to a whole new level. Perhaps having been shut in an isolation room over 1 yr as an in patient does that to a person.
Anyway, hello to you all and I look forward to sharing experiences and hope.
I do feel so very lucky to be here. Thank you, thank you, thank you, donor. I do wish to meet you one day to say those words in person.

Comments

  • Hi Jojoc,
    What an amazing post, it was an absolute pleasure to read it. I recognised a lot of the emotions and you express them so eloquently well. I am 11 months post-transplant so I guess I feel I am at a similar stage to you and so it struck a chord.
    Great to have you on here, there are so many great people and i'm sure you will be a great addition! There is something special about connecting with people who have / are going through a similar thing to yourself. I am so glad I found this site and I hope you gain the same as I have.
    Sorry I can't help with your specific queries on your other posts, hopefully someone will be along shortly with some experience and advice. For now, I just wanted to say welcome to the group and thanks for your amazing post!
    Greg
  • Hi Jojoc and welcome to the forum.

    I echo every thought you've written and yesterday when you posted this I was celebrating the 4th Anniversary of my transplant. Like you I can look back on it as though it was all a bad dream and my life is now back to as normal as it was before it all began. In fact I probably enjoy life more than I did before and the trivial things that frustrate us in our daily lives I now brush off as there are more important things to life.

    You're right that at the time of treatment you don't really stop to think about what is going on as your concentration is fully on getting through it and getting well again. It's only afterwards that you sometimes reflect on what you've gone through and come out the other side and it reminds you how lucky we are and how grateful we are to our medical teams, organisations like Anthony Nolan and of course most of all to the fantastic donors.

    As one of the online community champions I'm reminded more than many of the things that happened to me during my treatment or I've seen happen to others, but I actually find it quite therapeutic talking about it and of course rewarding in the sense that I'm hopefully helping somebody else get through the difficulties I've conquered.

    Thanks again for your fantastic post, which hopefully shows those still going through treatment that there is indeed light at the end of the tunnel and life does get better for us when it is all over.

    All the best,

    Steve
  • Hi Jojoc,

    Welcome to the forum. I'm also one of the Community Champions. It's over three years since my transplant and I am nearly back to normal.
    My emotions have finally come back - like you, I never cried during treatment and felt emotionally 'inert' for a long time afterwards, an example being how little I cried when my Dad died within a year of my transplant. Have I read your post correctly - were you really an in-patient for a year? How awful -
    I found five and a half weeks in isolation bad enough.
    In the long term it has brought us much closer together as a family. One fault I now need to watch in myself is that it can be difficult to empathise with people complaining of minor illnesses!
    Good luck with the rest of your recovery.

    Sue
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