Hello,
I have only recently been diagnosed with secondary MDS three years after achieving remission from AML so a BMT is my only hope of a long term cure.
Having now come to terms with my diagnosis I am keen to get the transplant done and hopefully move on with my life. I’ve been referred to the Churchill in Oxford. Does anybody have any experience of BMT here?
Are there any benefits in considering alternatives? London or Southampton would be the other reasonably local options.
Hi Rob,
It’s Amy here from Anthony Nolan. Thanks for your post. It looks like we don’t have many active members at the moment who have had a transplant in Oxford.
There are some things that you might want to consider when looking at a transplant centre. One of those things is proximity to your home because people might come and visit you and you’ll need to return for follow up appointments. You might also want to ask about how much experience they have of treating people with your diagnosis and treatment history, and whether they have any figures they can give you about transplant outcomes at the hospital. We’ve had feedback from patients who have had really positive experiences with the team at Oxford and the staff there are very caring.
There are people on here with lots of experiences, albeit at different transplant centres, which I’m sure they’d be happy to share. Do you know when your transplant is due to take place? Were there other questions or worries you have about having a transplant?
Amy
Hi Amy,
Thanks for your post. My transplant is likely to be in April so rapidly approaching (this will be a matched sibling transplant). I’ve really found the site useful in trying to understand and prepare for the whole transplant experience.
I fully take on board your point in terms of proximity to the transplant centre. Having previously had four cycles of chemo for AML and having spent 100 nights in hospital as a result, visits from friends and family played a massive part in getting me through the experience. I am quite fortunate to have plenty of choice of centre within a relatively easy commute. I did have the expectation that I would be able to get to the follow-up clinics under my own steam but I can see that initially that is likely to be wishful thinking which maybe makes London hospitals a less attractive option.
I got specific figures from the consultant at Oxford in terms of chance of achieving long-term remission but no specifics in terms of how Oxford featured in terms of success rate compared with other centres (other than it was above the national average which is encouraging).
One question, a friend has suggested that hypnotherapy might be useful as prep for the transplant. I can see that maybe there could be some benefit in this as I found that having a positive mindset when going through my AML treatment did make the whole experience bearable. Has anybody out there tried this prior to or post transplant?
Thanks,
Rob.
Hi Rob
I had a transplant in July 2012. I was diagnosed with MDS in 2011 and it rather quickly developed towards AML.
I had my transplant at St James, Leeds so I can not comment on your choice of hospital, only to say that Leeds was my closest and still an hour away. My husband came to see me every day, and my children twice a week. I’m glad the hospital wasn’t any further away.
Regarding hypnotherapy I don’t have experience of that but I would like to share some of things that I did so that you can explore further if you want to.
I was 41 when I was diagnosed. I am married and at the time my children were 13 and 15. I really did not want my diagnosis to make my children sad and worried. I had been told to live as normal until such time as I needed a transplant. How do you do this?
The first thing that helped me on my journey was I read a book called How the Mind Can Heal the Body by David Hamilton. Now I knew my mind couldn’t heal my body but I did believe that by getting my mind in the right place I had a better chance of healing, if I worked with the medicine/chemo/TBI/transplant rather than against it. I loved this book for the change it brought about me.
I practised gratitude every day. Being emotionally and mentally thankful for all the good in my life. By focussing on the good, you don’t have room to focus/think about your illness. Your mind can only think of one thing at a time, so why not something good.
The biggest thing that I did, was I began to meditate! Oh wow. I did this because one day I was walking through my lounge and I couldn’t fill my lungs, it was a horrible feeling. I decided I must have deteriorated, but blood tests showed that I hadn’t. So I realised that although I was happy my body was obviously stressed and anxious, not surprising really. I bought a meditating cd, from the very 1st time I meditated, just 10/12 minutes I have NEVER since had trouble filling my lungs. But the benefits are far more than this. It really helps to see your challenges with a different perspective, it helps you to feel calm and peaceful. I also believed that if my body was calm and peaceful I had a better chance of healing.
The final thing I did was I visualised my future, so clearly…that every cell in my body knew what I wanted. I wanted to grow old with my husband and one day be a Grandma!!!
I hope this helps!
I wrote a blog of my transplant journey. Jayne Snell
Please feel free to read it…and leave me a comment.
Any other questions please do ask me.
Wishing you all the very best for your transplant.
Jayne xxxxx
Hi Rob…just as an afterthought. The meditating cd I bought was done by buddhist monks, but since then I have discovered a lot of apps that you can download onto your phone or laptop. A particular favourite of mine is Headspace - you get a 10 day free trial. A couple of others worth a mention are Buddhify and Smilingmind.
Have a good weekend.
Jayne
Thanks for the reply and your useful advice Jayne.
I have just ordered ‘How the Mind can heal the Body’ and I think I will also give the hypnotherapy a go.
I read your blog with interest; you’ve been on an amazing journey!! It’s always reassuring to read the success stories; the more I read the more hopeful I feel about things.
Regards,
Rob.
You’re welcome Rob.
x
Hello Rob
Just want to say hello, I was diagnosed with hypoplastic MDS early 2012 and subsequently had a stem cell transplant from an unrelated donor in May 2012 at The Christie, Manchester. I underwent the 7 day conditioning process with chemo prior to transplant and then 3 weeks further isolation. I don’t know the hospitals you refer to but I was lucky to live about 15 minutes travelling time away from mine which was a big plus for convenience especially post transplant for the weekly check ups. There was no way I could have got there unaided in the weeks after transplant I felt so weak. Plus it was very handy for visitors.
I’m sure you will get the right information to make the best choice for you. I wish you good luck in that process.
I can’t help you re hypnotherapy. It sounds like you have already had lots of experiences which other members might find helpful. You also sound as though you have a positive attitude which is great, good luck with the book and meditation recommended by Jayne.
If I can help please get in touch, maybe you could keep us updated on your progress.
Best wishes
Peter
My husband and I were on a weekend away in Oxford when he was diagnosed with acute leukaemia. After a night in John Radcliffe hospital he was transferred to Churchill hospital. I cannot praise the hospital and every single staff member there enough. They have a fabulous set up and are very forward thinking. The care my husband received was second to none and even for me they made me feel very welcome finding me a room to stay in while they treated him. He was then transported up to Leeds near where we live and although it’s an excellent hospital and I wouldn’t say anythin g bad about it. The Church Hill was superb and I would defiantly say I would have every confidence in the team.x
Dear Rob
My husband had a BMT at the Churchill almost 2 years ago now. The staff/hospital/care etc were absolutely amazing. We live locally and being able to visit made everything easier (we have a young son as well). Small things that made all the difference: being able to visit any time of the night or day, being able to bring your own duvet cover in and decorate the room, use of technology (if you are well enough then Skype can work well), a lovely Friends cafe, continuity of staff. Big things that made the difference: follow-up care (emergency phone numbers, weekly appointments, continuity of care). Not quite so brilliant: parking can be an issue (I always used the bus) during the day, the blood bank is on a different site so can sometimes take ages for things to arrive (but that is hospitals all over!). Good luck with wherever you go. My husband is now back working and only going to appointments once a month.
Thanks to all of you who have commented - I really appreciate your feedback and advice. It’s great to get such positive first hand experience of the Churchill - it’s made up my mind for me.