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New Community Champion

Hello

I’m Rachel a new Community Champion. I was diagnosed with Acute Myeloid Leukeamia in 2015, after the initial chemotherapy I underwent a SCT. As neither of my siblings were a match Anthony Nolan was contacted and a match was very quickly found. Unfortunately, the SCT didn’t take and it was decided I required a second SCT. Many of the key aspects relating to the second transplant were altered, including the donor. There was no concern about the first donor, the medical team decided, as I was particularly fortunate to have more than one match, that along with a change in the chemo regime and some medication they would try a different donor. The failure of the first transplant not going to plan was a tremendous set back but that is all it was, a set back, I’m pleased to report I’m now, 100% donor.

I have experienced skin GvHD which has cleared up and I currently have mouth and eye GvHD. Personally, I find GvHD a mixed blessing, on one hand it’s a fabulous sign regards the long-term outlook of the transplant but on the other hand, it can be annoying. The days it aggravates me, I remind myself it’s a small price to pay and it will eventually disappear, it’s certainly not holding me back from living my life. After the second transplant I decided to try to make silk purse out of a sow’s ear by putting into place several life changes. I moved to a part of the UK I have always yearned to live in, because of the move I have adopted a different and more rewarding lifestyle which I had previously only dreamt of.

I look forward to helping support others, as I am unmeasurably grateful to all who helped me during the most challenging, physically and mentally, two years of my life. I experienced darker moments than I could previously have imagined but without the dark we’d never see the stars. I surprised myself by getting through that period, I’m stronger for it, I’m a better person for it and I’m now able to give others the support they may need to get through similar times. I’m grateful for all the help I had from the NHS, Anthony Nolan, my wonderful donors, family and friends.

Rachel

Comments

  • Hi Rachel, and welcome to the community champions team from an old hand.

    As I'm sure you've seen the forum is a great place to be and it's so rewarding as a champion to be able to support others get through what we have. You will have some things in common with me and the other champions and some things that we have not experienced, so between us we can hopefully help people who are concerned about the things that are happening to them and reassure them that they are not alone.

    I also had acute skin GvHD and I had a similar outlook on it in terms of it being an inconvenience but a positive in terms of it keeping my Leukaemia at bay, and of course much better than the alternative!

    I know several patients on here are facing second transplants or top ups so your insight in that area will be invaluable.

    You are so right about making life changes as a result of your treatment. It certainly gives you a new perspective on life and makes you value things more. Whilst my life has returned to normal in terms of work and family life now that I'm over 4 years post transplant, I savour every day and try not to let unimportant things get me down.

    Once again welcome on board and I look forward to reading your contributions in due course.

    Steve
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