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Welcome from community champions

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Amy_AnthonyNolanAmy_AnthonyNolan Total Reaction Points: 9

Community champions are fantastic volunteers who respond to posts in a supportive way, share their experiences, and keep this forum active. They help make sure that your questions are answered and you can talk about your worries and your triumphs in a supportive and open environment.

This is a thread for community champions to introduce themselves and share their top tips on using the forum.

Comments

  • peterveepetervee Total Reaction Points: 156
    Hello from a Community Champion

    My name is Peter, I'm 66 years old, married and retired. I have 3 grown up children and 4 grandchildren. I live in Stockport ,Cheshire.

    Towards the end of 2011, a routine blood test picked up a low platelet count. This was monitored and the count continued to drop. A bone marrow biopsy was carried out in early 2012 and I was diagnosed with the blood disorder hypoplastic myelodyplasia (MDS). I was referred to The Christie hospital. Platelet levels continued to drop, I was advised the only cure was a stem cell transplant. At this time I was working and had no obvious symptoms . A non related donor was found on the Anthony Nolan register, the match was perfect and the transplant was carried out in May 2012.

    The transplant has been a success albeit there have been many ups and downs not least pneumonia in September 2012 and other cold/flu like infections which have all been treated successfully. I don't have the same energy levels as before transplant but life is pretty much back to normal.

    I sent my donor a 'thank you' letter after transplant and we kept in touch. Last October I met my donor, it was a special occasion and I had the support of Anthony Nolan.

    The forum has been a big help to me in my recovery, it has been a place to share experiences, to almost be able to speak to other members who understand the process of transplant and to listen and offer support to each other.

    If I can help with with sharing my MDS experience or meeting up with a donor do please get in touch on this forum.

    If you are a new member share your experience and successes with us, if you have any useful tips, you could also share them with us.

    Peter
  • Dieseldrinker62Dieseldrinker62 Total Reaction Points: 225
    Hi everyone, I'm also a Community Champion.

    My name is Steve and I'm 48 and live in Northampton. I'm married and have twin 13 year old boys (who can be a handful at times) and a 28 year old daughter (who has her own place and looks after herself).

    In summer 2012 I started to feel tired, more tired than usual, and also noticed slightly blurred vision and had dizzy spells. I also felt low on energy and got quite breathless without making much effort. During some time off to look after my boys during the summer holidays I made an appointment at the doctors as I felt something wasn't right. An ECG proved normal, as did an eye test, so I waited a couple of days for the results of the blood test they'd done.

    The results came through on the Friday before the bank holiday and showed that I had a low white blood cell count, but they knew no more than that at the time. I was told to expect the worst (which naturally put the fear of **** into me) and was referred to the local Haematology Unit for further tests.

    I went to the Unit the following Wednesday and had more bloods take and the dreaded bone marrow biopsy. The following day I was called back to the hospital and told I had Leukaemia, and a second visit on the Friday confirmed it was Acute Lymphoblastic Leukaemia.

    I was admitted to Leicester Royal Infirmary the following Monday and went through 3 months of chemo followed by a stem cell transplant from a Matched Unrelated Donor in January 2013. In fact my two year anniversary is just up!

    I've had mouth ulcers in the early days, lost a lot of weight, I've had viral warts and have skin GvHD. The GvHD is more or less gone now after about 18 months of steroids and 15 months of photophoresis. I finally feel about the same as I did before I got ill.

    In September 2013, a year after being diagnosed and 9 months after my transplant, I climbed Mount Snowdon, raising about £5k for charity, and in September 2014 I organised a 12 hour cycling event round a local reservoir, raising another £900. I hope to do something each year to support the charities that have helped me survive. Perhaps we can organise something jointly through here and all get together??

    I find the forum really useful, and it's encouraging to hear from people who are long term survivors of transplants. I log in most days and check out the 'recent discussions' link to see what's new. Having gone through the process I like to help others who are going through tricky times and even if I don't know much about all of the illnesses other than Leukaemia, I hopefully chip in where I can with some supportive comments that I hope help people and make them feel they aren't alone.

    The forum is a fantastic place and full of friendly people who are more or less in the same boat, or have been there. We are special people, lucky people, and very privileged to have been supported by Anthony Nolan, who have found us our fantastic donors. I hope in some small way I can repay their support by helping others.

    Steve
  • lorsyloolorsyloo Total Reaction Points: 27
    Hello all!

    My name's Laura, and my daughter Issy had a BMT for acute Myeloid Leukaemia in 2013. She had presented in our local a and e with a very swollen foot. Over the next three weeks she became more and more tired and pale and was eventually diagnosed with AML. She was treated in Southampton but we found out shortly after beginning chemo that she would need a BMT, and none of us were a match. That's where her donor and Anthony Nolan stepped in. Her transplant in Bristol went very well indeed - she was out and about (mostly at the zoo, in the snow, in January!!!) after a relatively short time. Thjbgs seemed to be going well and we had the best summer ever!

    Sadly, she relapsed a year later and died shortly afterwards. She had a very rare genetic abnormality within the leukaemia and so sadly this was always a possibility.

    Anthony Nolan and her amazing donor gave her a fabulous extra year with us, we fitted so much in and just had such a lot of fun!

    Our experience with a transplant won't be the same as everyone's, but perhaps there are other parents going through the same thing who will find the forum a helpful place. It's certainly a very friendly one! I would have found it incredibly useful to have a forum to drop in, ask questions or even just have a chat whilst Issy was in Bristol in isolation.

    Although our story didn't have the happiest of endings, we had a very precious ten years with Issy and Anthony Nolan were a huge part of the last one. I set up a Friends group to fundraise and raise awareness, and five of us are forming Team Issy to run the London marathon this year.

    So anyway, here we all are....hopefully we can all help each other out a bit and create a friendly place for others going through similar experiences. Do say hi and please ask any questions, if we can't help we probably know someone who might be able to!
  • SuePSueP Total Reaction Points: 39
    I'm a new Community Champion

    I'm Sue and I'm 62 years old, retired; married with two grown up daughters.

    I was diagnosed with non-Hodgkin lymphoma way back in 1999 when I was 45. After a history of relapses and various treatments including several courses of chemotherapy, radiotherapy and an autologous stem cell transplant, it was decided in 2013 that I needed a donor stem cell transplant.

    No match could be found for me either in the UK or internationally so I received a double cord blood transplant in the Royal Hallamshire Hospital, Sheffield. Cord blood is donated by new mothers as the umbilical cord is rich in stem cells. An adult requires two cord blood units. Anthony Nolan not only sourced these, unbelievably from Kazakstan and Slovakia, but also organised volunteers to fly out and bring the units back to Sheffield.

    I had a very rough time in hospital for five and a half weeks but three years on, I'm fine apart from minor graft versus host skin rashes.

    Sheffield is, I think, the only Anthony Nolan donation centre outside London so I was lucky enough to meet an altruistic young man who was donating his stem cells.

    I intend to start a thread about cord blood transplants and would like to support forum users in any way possible.

    Sue
  • Dieseldrinker62Dieseldrinker62 Total Reaction Points: 225
    Hi Sue and welcome to the Community Champions club! You'll find it very rewarding and I've seen that you've already posted a number of supportive comments.

    How fantastic that your cord blood stem cells came so far and it just goes to show how wide the net is cast when searching for suitable donors for patients. It's a truly international affair and I've heard of several people on here who have had donors from other countries, particularly Germany.

    Thanks for helping out as a Community Champion and I look forward to helping you support others going through what we have.

    All the best,

    Steve
  • SuePSueP Total Reaction Points: 39
    Hi Steve,
    Thank you for your kind words of welcome. I'm enjoying the role so far. You seem to be doing a great job,

    I do have a question for you: Is drinking diesel really to best way to recover from a bone marrow transplant?!

    Sue
  • Dieseldrinker62Dieseldrinker62 Total Reaction Points: 225
    Thanks Sue,

    The 'Dieseldrinker' is a nickname I've had for some time as a product of having an old land rover some years ago which was so thirsty it effectively drank diesel! I've used it on a few forums up till now so it's kind of stuck with me and it's one I can always remember (which helps with the Chemo Brain!)

    All the best.

    Steve
  • NicholaNichola Total Reaction Points: 9
    edited May 18
    HELLO THERE!
    I'm Nichola... a new face to this forum, and I just wanted to pop in to say hello!

    I am one of the new Online Community Champions on the Patient and Family Forum, and really hope my own experiences may help YOU, as and when you need it. No question is too big or small... I love to listen and talk to new friends and will do my best to help during tough times... I've been there myself, and understand how important it is to know you're not alone!

    So who am I? Well, here's little bit about me... When I was just 3 years old I was diagnosed with a blood disorder called Congenital Neutropenia and after daily GCSF injections for over 20 years to keep my immune system above water, and countless days and nights in hospital with life threatening infections, an annual bone marrow test in 2010 showed an unwelcoming cell mutation... which professors said could be a sign of Acute Myeloid Leukaemia developing. To prevent AML from developing and to cure my lifelong blood disorder, I was given the opportunity to have a Bone Marrow Transplant! I underwent the transplant in 2011.
    By far the hardest decision I had to make and the toughest time of my life... but it was the BEST thing I could have ever had, as having that transplant has given me my yesterday, today and tomorrow, and I am forever grateful!

    Of course, this wasn't an overnight cure, and the treatment in itself sometimes felt worse than my actual illness... but it sometimes has to get worse before it gets better and I appreciate there are people on this forum that may be going through that 'worse' stage now... but you are not alone!

    I am now over 5 years post transplant and doing really well... which is one of the reasons why I am now able to share my story and hopefully help others who are going through similar treatment - so if you feel you need to talk to someone, you know where I am... and if I can't help, then I probably know someone who can!

    Thank you for popping in and I'll look forward to speaking with you soon :) x
  • Dieseldrinker62Dieseldrinker62 Total Reaction Points: 225
    Hi Nichola and welcome to the team. Especially welcome to the community champions team!

    You sound like you've been through the wars throughout your life and it just goes to show that there are many reasons that a transplant is necessary. I wonder if in the future we'll see stem cells transplants being used to treat many more conditions than those they do already.

    I've been a community champion for a couple of years now and whilst I find that I can't always help with advice gained from experience, I can still offer support. As the stem cell transplant is generally similar for all of us there is help and advice we can always give from a patients perspective, and with the back up from the Anthony Nolan team this forum is a very useful place to come.

    I look forward to reading your posts and jointly supporting others.

    All the best,

    Steve
  • SuePSueP Total Reaction Points: 39
    Hi Nichola,
    A very warm welcome!
    You sound as if you will be a very valuable member of the community champions group!
    You certainly haven't had it easy so I'm really glad that the bone marrow transplant has improved things for you.
    I think your childhood experiences could well help supporting some patients and also you can put a younger person's perspective on treatments etc. (I am 63!).
    As Diesldrinker says, we can always offer support although not the medical knowledge that the Anthony Nolan professionals supply. I try to do this if I know it could be a few days before Hayley, the AN nurse, can reply eg at a weekend.
    Very best wishes,
    Sue
  • NicholaNichola Total Reaction Points: 9
    Thank you for the warm welcome, Sue. It's great to be part of the team, and I really hope my experiences can help others, one way or another.

    I hope you are well!

    Best wishes,
    Nichola
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