In 2010 I had the last of three bone marrow transplants to treat my MDS. Quite a few things have happened since then!
Russell Cooks tells about his diagnosis and what happened next
From climbing stairs without a feeling of overwhelming fatigue to going back to work
For me, a major milestone after my diagnosis was simply being able to climb stairs and dress myself without a feeling of overwhelming fatigue. So you can imagine my surprise when, a mere six months after my last transplant, I was able to go back to work - albeit only for a day a week initially. I was also able to take part in a charity walk, itself a milestone since I’d only previously managed to make it to the end of my road!
I had the most amazing support and help from my work colleagues and when I came back they were very keen to make sure that I didn’t overdo it. Imagine my wife’s surprise when, during the first six months back at work, I found myself, presenting to groups of up to 80 people in towns in all corners of the UK - from London, Manchester, Birmingham, Cambridge, Bristol, Edinburgh, Belfast. So, not exactly the idea I had to come back to work gradually….
My stubborn approach to endurance events and how I joined MDS UK Patient Support group
In 2012 I decided that I needed to try and get back to some sort of fitness so I took up jogging and in 2013 managed to run my first marathon - the London Marathon. My wife will always tell you that there was never any doubt in her mind that I would finish it although there were quite a few people at the start of the race, when I was telling my story, who were quite frankly amazed I was there at all! Especially as I’d just been getting over bronchitis and the furthest I’d run in my life was only 7 ½ miles!
This only spurred me on to do more. So in 2014 I ran three marathons, two half marathons, and a 14 mile assault course to raise money for a number of charities of which MDS UK was a major beneficiary. I’ve also run comedy nights and ‘beer and curry’ nights to help raise funds and if anyone wants any help on either of those you can count me in straightaway!
Clearly this brought me to the attention of Sophie Wintrich, the CEO of MDS UK, who felt that my somewhat stubborn approach to endurance events might rub off on the charity! It was a huge honour to be asked to join the charity as a Trustee and I’m as determined as ever that people throughout the UK should have access to the best information, the best support, and for a team of people dedicated to their specific illness. More recently I’ve taken over the role as head of fundraising in between trying to fit this into a successful business and we’ve recently managed to secure places in nationally recognised sporting events.
I have represented MDS UK at the All Party Parliamentary Group on Cancer at the Houses of Parliament and have been involved in a number of campaigns through my efforts on social media where I seem to have developed a note of notoriety!
Russell Cook Running The Cabbage Patch
The diagnosis of cancer with the benefit of hindsight...
In my work life things have most certainly changed for the better. With the benefit of hindsight it’s obvious to me now that for the 10 or 15 years prior to my diagnosis with MDS that my health was suffering and consequently my ability to work. Work was a chore, I was constantly tired, and because of that I found working life to be unsatisfactory and I simply really wanted a way out.
The diagnosis of cancer, as it’s turned out, has actually turned out to be the best thing that happened to me. It’s given me an enormous focus, it’s made my family much closer, it’s given my kids the confidence to go out and do things firmly in the knowledge that they can do absolutely anything. And in my work life it’s transformed everything. So much so, that in 2017 I managed to receive the accolade of top associate partner with my firm of national financial advisers - Foster Denovo.
Nearly 8 years post transplant I find myself more enthused, more energetic, more focused than I’ve been at any point in the previous 30 odd years. More importantly, I am cured of MDS.
My vision for MDS UK Patient Support Group
Going forward, I’d like to see the charity expand its sphere of influence, become a major director of research into MDS but only would also like to see more people involved in the running of the charity. It’s an incredibly small team of people who frankly do the jobs of dozens of people and I would like to be a catalyst to encouraging people to join us.
Please do send us your story – whether you are a patient, family member or friend:
Email it to mds-uk@mds-foundation.org, or call to our main office Tel: 020 7733 7558.
You may talk about any aspect of the condition, or how your experience has affected or changed you. Feel free to add photos as well. Thank you in advance!
You are also invited to join our forum, a lively community of MDS patients sharing their own experiences and questions.
