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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

Its about time I said Hello

This is my first post, I had a stem cell transplant in Dec 12 and keeping everything crossed, I am doing really well and now feel the time is right to start ‘talking’.
For a long time i didn’t want to tempt fate by saying ‘look at me, I’m well’ but something has just clicked in my sub-conscience and the time is right to share with others.
This new phase started by feeling the need to write a letter to my donor, something again I wanted to do but never felt the time was right. The letter has been written and is ready to be posted, so someone will get a surprise very soon.
I have also felt the need to volunteer with Anthony Nolan to give something back and equally to join this group and offer any experience on my recovery that I can
When your further along in your recovery it is sometimes difficult to remember how hard it was, but as soon as you read / hear something it takes you right back, to when it wasn’t so easy. I remember that even picking up the phone, walking for a newspaper or even just seeing your friends was not something I could easily manage.
As for my recovery its going as well as it could, I’ve had many up and downs but even now 2 years and 3 months later, I still have to watch myself and take my antibiotics twice daily. In addition, I did some investigation into eating more fruit and vegetables as I heard it would aid recovery. I found a product called Juiceplus and I now consume 27 fruit and vegetables in a capsule each day. It has returned my energy levels back to normal. If you want to now more, pls just ask.
Everything is going really well at the moment, long may it continue
Thanks for reading

Comments

  • Hello and welcome to the forum.

    Pleased to hear you felling well and have decided to start talking, this is a great place to share experiences, learn and support each other.
    Have a good look around the other postings there are some really good stories.

    I'm pleased to hear you have taken steps to contact your donor and hope you get a reply. I had my transplant in May 2012 with stem cells from an anonymous donor found on the AN register. I sent him a letter after 3 months to say thanks, I was so pleased to get a reply at a time when I had been admitted with pneumonia and was in critical care. We went on to exchange letters anonymously and we met up last October, it was a great occasion. My donor was as pleased as I was to meet up and made light of what he had done, meeting me answered many questions for him. He is a lot younger than me, we still exchange emails. There is a good report on the Anthony Nolan 'Latest News' section about our meeting (Published January 7th).

    Pleased to hear you volunteer for AN, I too do a bit for them, maybe you could think about joining the Patient Panel, it gets you involved with new topics and ideas which is mostly done by email.

    I agree with all you say about the recovery period and like you catching flu or a cold is a major event, I am still able to contact my transplant centre and they always help out with solutions usually antibiotics or antivirals. That's an interesting tip about the veg capsule.

    Hope you keep in touch, enjoy the forum and stay well.

    Best wishes

    Peter
  • Hi there,

    I'm just behind you in terms of timescale and had my stem cell transplant in early January 2013. I know what you mean about not tempting fate, but I've been feeling well for some time, with only a few minor niggles, so I remain confident about my future.

    I wrote to my donor a while back, anonymously within the first two years. I haven't heard back and do accept that I might not as some donors will choose to leave it at that. I thought it was important to thank them even if I couldn't do it in person and let them know I was ok. They did a special thing for me, that potentially saved my life, so thank you was the least I could say.

    I find that looking back at photographs of me as I've recovered helps remind me how far I've come. I was speaking to someone at the weekend who commented how well I looked, particularly compared to how he remembered me a year ago, when I was grey in complexion and still with thin hair.

    I also got a reminder of being back to normal a couple of weeks when I got weighed for the first time in a long time. I lost 3 stones during my treatment and now I've put 4 stones back on! Perhaps I'm eating too well and blaming it on the steroids I've been on?

    I've heard of Juiceplus in relation to a friend who is on a diet. Perhaps I should join him!

    Good to have you on board and please do share your thoughts on the discussions between our contributors.

    Steve
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