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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

A Hello from me and some Anthony Nolan news

edited March 2015 in Welcome
Hello,

I just wanted to introduce myself here on the forum. My name is Billie and I am the new Patient and Family Officer. I have worked for Anthony Nolan for two years and join the Patient Experience Team from previously working more closely with our Donors and our Volunteers who courier stem cells all over the world. I’m now really excited to get involved with supporting you, our Transplant Community. I've notice that a lot of you have recently joined too which is wonderful, welcome!

And now for something different:

Anthony Nolan announced yesterday that they are one of the main sponsors of The British Transplant Games 2015 which will be held in NewcastleGateshead July 30th – 2nd August.

One of this year’s competitors is 29 year old bone marrow transplant recipient, Luke Buckingham from Taunton.

Luke describes exercise as the 'Single biggest thing' that got him through his illness.

Has exercise helped you too? Did introducing, even a little amount, effect your energy levels?

Tell us about your experiences and follow the link below to find out more about the games and how you can compete as part of Team Anthony Nolan.

https://www.facebook.com/anthonynolanpatients/posts/364588463746839

Comments

  • Hi Billie and welcome to the forum. I'm sure you are no stranger to these pages, just want to say hello and wish you good luck in your new post.

    It's great that there are new members, everyone has an experience to share which can be helpful to another. It's also good to be able to support each other by just having a chat or even a moan.

    Exercise was really helpful for me. Looking back nearly 3 years ago now it was a huge effort to get up, shower and get dressed. But by taking small steps one day at a time and a gentle walk just round the garden at first and then going to the local shops or park was a great help. I kept up the walking and now do a couple of walks a week at least, I do two walks with a Macmillan walking group during the week. For me this kind of exercise has been really helpful.
    Fatigue did affect me a lot after transplant but I was helped to get going by those around me. I'm really grateful now for their encouragement. I'm not up to marathon standards but looking forward to a 5 mile sponsored walk with my local transplant unit in June.

    Peter
  • Hi Billie, and welcome to your new post at Anthony Nolan. you'll have no difficulties with us lot - we're a friendly bunch!

    One of my regrets was not exercising more during my treatment as I felt that my recovery could have been quicker if I had done more. As it was I found getting motivated to exercise was really difficult, particularly during the early days after my transplant. I suffered as a consequence and lost a lot of muscle from my legs. This made even climbing the stairs a chore and it took a long time to get my strength back in my legs.

    I've often joked to my family about taking part in the transplant games. I guess people think of a transplant recipient being someone who's had a new organ, such as a heart or lungs, liver or kidney, but we are transplantees just the same. If I could find a sport that I could take part in I'd love to take part.

    Credit to Luke and all those taking part. Perhaps I'll get in training for the next time round!

    All the best,

    Steve
  • Thank you both for your warm welcome! It's appreciated.

    Peter it is great to hear that exercise was really helpful to you. I can only imagine how effortful the simplest of tasks must have been in the beginning, but it is amazing how taking small steps can set you on the right path to be able to monitor your progress and gently increase your activities.

    As you say encouragement from those around you can be a huge help when self motivation is harder to find.

    Good luck with your sponsored walk in June - let us know how it goes!

    Steve you mention motivation too and it is definitely something that lots of patients struggle with. You also highlight an interesting point about the loss of muscle making it that bit harder when you did exercise even in every day ways.

    You are right - you are transplantees just the same as organ donors and that is why we are so thrilled to be putting together Team Anthony Nolan.

    The Games encompasses those who are advanced in their sport and complete beginners! So extensive training isn't necessarily required. We will be providing a full list of the available sports in the near future and in the meantime if you have any questions please don't hesitate to get in touch.

    Billie
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