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Christine Cain: “My inquisitive mind led to my recent MDS diagnosis!”

Christine: I have been most fortunate with my health and never had any serious health issues before

My name is Christine Cain, aged 69 years old, a retired PA in Public Health and I live with my extremely caring husband Tommy, in Suffolk and we have been married for 51 years. We have a 38 year old daughter, Rebecca, who has suffered from ME/CFS since she was 16 years old. With great determination, she achieved a BMus Hons degree at Trinity Laban Music College, Greenwich, where she was a Violinist, but very sadly, since she was 24 years old, she has not been able to pick up her violin. Her ME/CFS is severe, she lives independently, but we both support and care for her on a daily basis. I just wanted to give you some background, before I explain how I arrived at my diagnosis of MDS and the extreme concern of my health going forward, as not only has my diagnosis caused severe and overwhelming shock to my husband and I, but also the impact it has had on the health of our very caring and unwell daughter.

I just wanted to say that I have been most fortunate with my health and never had any serious health issues before, for which I feel lucky and very grateful, until I recently received the bombshell diagnosis of MDS - EB1, following a Bone Marrow Test carried out in June 2020.

Christine Cain Family Photo

I decided in January 2020 to query these "Abnormal blood test results" with my GP

I shall just recap as to how I reached my diagnosis and hope that you may find these details of interest. In May 2019, I saw my GP, as I developed Laryngitis symptoms which lasted 8 weeks and he suggested a Full Blood Count, amongst other blood tests. The test came back as ‘Abnormal, to be expected, No further action’ and both my haemoglobin and Red Blood Cell results were below the normal range. My GP suggested an endoscopy, where I was informed that I had a Haitus Hernia, for which I am taking the appropriate medication. I also mentioned to my GP that I had more than the usual ‘palpitations’ and he discovered a ‘Heart Murmur’, so I had the necessary 24 hr ECG and Echocardiogram and was then referred to a Cardiologist, who then informed me that my Heart Murmur was ‘Innocent’ so I did not need any further treatment.

From May 2019 – Dec 2019, I had five Full Blood Count tests carried out at my Surgery and they were all ‘Abnormal……’ and I decided in January 2020 to query these Abnormal blood test results with my GP, as I am a very inquisitive person and have always been problem solving throughout my life. My GP suggested that he could ask for ‘Advice and Guidance’ by email from Haematology at my local hospital and they requested more blood tests to be carried out and then asked my GP to refer me to them. I had my first appointment with my Haematologist in March 2020 and he said that as my Haemoglobin and Red Blood cells had been stable since May, 2019, he didn’t think that I had anything seriously wrong, which would cause my anaemia. I had no symptoms at all, apart from being told I was anaemic and it was decided that I should have an Ultrasound Scan of my spleen to make sure that it was not ‘enlarged’, but my Haematologist did not expect to find anything untoward and thought that he would probably be able to discharge me in June 2020! He was correct, my spleen was a perfect size and all the other organs were also fine.

At my follow up appointment in June 2020, which was over the telephone due to Covid – 19, a Registrar in Haematology arranged for me to have a Bone Marrow Test, to ascertain the reasons for my anaemia. This, I had carried out on 25th June, 2020 and I patiently waited for my results, but was told that they would be delayed because genetic testing was also to be carried out and it would be several weeks before the results would be available from Cambridge Addenbrookes and following these results, my case would then be discussed in an MDT (Multidisciplinary Team Meeting).

I became more impatient and extremely worried, so I started to research my symptoms on various websites and I became very concerned as to why I was not told the outcome from the Bone Marrow Test, so I insisted that I should meet with my Haematologist to receive at least part of my result and be prepared to wait for the genetic test results, which he said would give me a correct diagnosis and prognosis.

The diagnosis

It was at the face to face appointment with my Haematologist on 21st July, 2020, at which my wonderful husband accompanied me, that I was given the bombshell that I had MDS, but he reiterated, that I would have to wait until September before I would know the exact diagnosis and prognosis, as Haematology were waiting for the very important results of the genetic testing. I was also told that the bone marrow test had shown features of Myelodysplasia with excess blasts. It was also explained that this is a bone marrow disorder associated with a pre-leukaemic phase with a tendency to transform to leukaemia, based on the risk category. I had been wondering why a Clinical Nurse Specialist was sitting in on my appointment and she was making notes during the consultation, but afterwards I obviously understood the reason! My Clinical Nurse Specialist then just handed me my red coloured MDS UK Supporting Patients with Bone Marrow Failure ‘Understanding Myelodysplastic Syndromes’ Patient handbook and we were then sent on our way!

My husband and I obviously read this extremely informative, but very scary book, from page to page and we spent the next few days, with our very unwell daughter, discussing how bad my diagnosis could be and the thought of waiting another two months for the final results and diagnosis/prognosis, incorporating genetic testing results, was almost unbearable!

The day I phoned Sophie at MDS UK Helpline

Sophie and Sophia, Midlands Group Coordinator

Sophie, MDS Patient Liaison and CEO & Sophia, Midlands Group Coordinator

After having read my copy of the MDS Handbook, I decided that hopefully Sophie, Patient Liaison, would be able to offer me some support and assistance.

I left a voicemail and on the 14th August, 2020, received the best phone call ever from Sophie, who gave me hope for my future and I felt that I had just been through an incredible Counselling Session, so caring and supportive, as we chatted for 40 minutes!

In our conversation, Sophie then said that I need to ask my Haematologist to refer me for a second or additional opinion from Professor David Bowen at Leeds Hospital! For once, I felt that the much needed help and empathy could be on its way!

I eventually chased my Haematologist for an appointment to discuss my genetic results in my Report from the Multidisciplinary Team meeting, which was held in Cambridge Addenbrookes on 24th August and which I had read myself on my ‘Full Patient Record’ on my GP Surgery’s Website, of which I have the appropriate access. I then had my follow up appointment with my Haematologist on 15th September and I asked him to please refer me to Professor Bowen for a Video Call following the suggestion from Sophie, Patient Liaison.

Video Call with Professor Bowen

Within a couple of weeks, I received a date by email for my Video Call from an extremely efficient and most caring member of Haematology in Leeds Hospital and I was told it would take place on 21st October at 10.00am.

My husband quickly purchased a WebCam to enable me to take part in the appointment via Video with Professor Bowen. I must admit, we have never been involved in this type of technology before, but would highly recommend this type of appointment, but I can say that I was more worried about the technology working than I was about the interaction with Professor Bowen! The process was so simple by just placing the small camera with microphone on top of my monitor.

At 9.50am, I inserted the Haematology Website into my search engine and then it produced a screen, on which I could insert my full name, date of birth etc and as soon as my details had been validated, a voice told me that they knew that I was ‘Waiting In My Own Private Video Room’ and this message repeated, probably 3 times in intervals! Then at precisely 10.00am, Professor Bowen appeared on the screen in front of me. He said ‘hello’ with such a friendly voice and checked that I could see and hear him and everything worked so perfectly and enabled me to relax, knowing that this brilliant technology, with excellent software, was working well! This was so much better than sitting and feeling tense in a Waiting Area of a Hospital to speak with my Haematologist!

Prof David Bowen

Prof. David Bowen

Professor Bowen was so very caring, showed empathy throughout our conversation and discussed this rare disease with me in great detail.

It was so good to be speaking with a person, having 30 years’ experience of MDS. The Professor made my consultation personalised for me and I felt so relaxed throughout my one hour appointment.

At the beginning of my appointment, Professor Bowen asked me if I could give him the background of how I knew about my anaemia and how I eventually received my diagnosis.

I had already made lots of notes for this extremely important call, which were in front of me, but luckily, I memorised it all in chronological order and this Video Call was the best Consultation I have ever had with a Consultant and I truly mean this. After discussing my diagnosis and genetic test results with the Professor in much detail, he said that I should be ‘cautiously reassured ‘ going forward, but he said that he does not have a Crystal Ball! As I do not have any symptoms at the moment, I shall not need any medication for now.

Professor Bowen also discussed the various treatments available if and when my blood levels drop down in the future. At the end of my Video Call, the Professor confirmed that he will follow up with a letter to my Haematologist, GP and a copy to myself and he will be suggesting to my Haematologist that I have a repeat Bone Marrow Test in January/February 2021 and also suggested that he speaks with me after the results are known, following a ‘further referral’. I shall also have repeat blood tests carried out and for now, I remain on ‘Watch and Wait’.

I wish to thank you for reading my lengthy story of how I reached my diagnosis of MDS and hope that it will possibly be helpful to you and I also hope that you would not feel worried or concerned about taking part in a Video Call in the future and having the opportunity of an additional or second opinion from a ‘true expert’! As you can probably tell, I was so very impressed and it was so easy to make the connection for my Video Call and I feel so relieved having spoken with Professor Bowen, who showed so much empathy and kindness!

Learn More: Video Calls with Prof David Bowen

My husband, daughter and myself wish to thank Sophie, Patient Liaison, so much for all her kind help and expertise that she gave to me. We are all truly grateful and I am so glad that I have become a Member of this excellent and very informative MDS Patient Support UK Group! I certainly found all the paperwork I received in the post very interesting and most helpful and it was really beneficial for me to read all the ‘Patient Stories’ in the various Newsletters and also gave me the opportunity of finding out which medications were available for various MDS Sub-Types.

Many thanks to everyone, Christine Cain

Read the latest patients stories


Michael Bower: “I call it ‘the condition’ as I hate using the ‘C’ word”

My name is Michael Bower, I am a 63 yr old male. I was diagnosed with MDS in September 2016. Having had trouble with my blood count after an operation (a total knee replacement) I was sent to see a haematologist who sent me for a bone marrow biopsy.
This showed that I had myelodysplastic syndrome with multi-lineage displasia, which means it affects both red and white cells plus my platelets.

Michael Bower

I am on ‘watch & wait.’ I have bloods taken every month and see my consultant every 3 months

I have always followed a healthy lifestyle: in my younger years I played football, golf and some athletics, I later turned to fell running, a sport limited to the North of England due to the hilly and some areas mountainous terrain. It was a sport I enjoyed and occasionally excelled in.
I did smoke in my early 20’s while having an occasional drink, and to this day I still have the odd glass of IPA ale which I enjoy.
I have come to terms with my illness and it’s possible prognosis, the hospital I attend which is Burnley General have me on ‘watch & wait.’ I have bloods taken every month and see my consultant every 3 months, I am always willing to help other sufferers to help them understand the problems that can arise.

Michael Bower 2

I call it "the condition" as I hate using the “C” word

The condition has caused me other problems.

I had a swollen lymph gland at the top of my right leg, not long after the knee replacement. They surgically removed it in case of further cancerous cells being present. It was all clear but, due to now having a blockage to my lymphatic system, I now have to wear class 2 pressure socks to keep swelling at bay. Not nice things to wear... some days the pain is unbearable. I live on painkillers!!

It's important for me to make other people understand the ‘condition’ - that’s what I call it as I hate using the “C” word.

Because I have not been given chemo or radiography and not suffered hair loss, they seem to think there’s nothing up and I’ve actually been called a liar!!

I have always been an active person and I still carry on

As I have always been an active person I still carry on by going to a local gym to keep myself moving and it helps keep the weight at bay and lifting and pushing weights is good for building up your bone density which is good for MDS. I would recommend it to everyone suffering the same thing as me, I also have some good friends at the gym who help me through the good times and the bad.

"A Cure" A Poem by Michael Bower

I would like to make some funds for the MDS UK support group

Exercising property means you will follow a proper diet too, because of this I have now decided I would like to make some funds for the MDS UK support group.

My target is to try and get myself fit enough to run in next years London Marathon - as an athlete I have a sub 2hrs 40mins for a marathon time so I know what I’ve got coming to me as far as training goes although I do expect to be a lot slower!! If I am unable to get my self fit enough for a marathon there are other avenues open to me.

If you are reading this, your goals do not need to be as big, sponsored walks, cycling, no matter how far, will help you feel a lot better within yourself and help the MDS UK organisation.

Many Thanks for your time reading this and I truly hope it’s given you some encouragement.

This article was first published in our Newsletter No10 on June 2019

Read the latest patients stories


Will McGookin: MDS diagnosis and his interview with Sky News

MDS patient Will McGookin was delighted when a twitter post about the postponement for his chemotherapy due to Covid19 led to an exclusive interview with Sky News.
The piece considers how the treatments and lives of cancer sufferers have been put on hold due to the pandemic, the while raising much needed awareness of MDS.
But how did this come about?

Will Mcgookin on SkyNews

“MDS? I’ve never heard of it”

An Irish guardsman for 12 years, Will was unfortunately discharged due to a very rare bone disease called Cystic Angiomatosis.

In January, he began suffering from severe headaches, sinus problems and nose bleeds. Will knew something was not right, so he booked an appointment with his GP.

After the results of a full blood count in February, he was told he had to see a specialist. Panic ensued as he had no idea what was causing him to be so ill.

Will’s world crumbled when Dr Toth, of the Haematology unit at Royal Liverpool hospital uttered those fateful words: “William, you have high risk MDS.”

Due to lack of public awareness of the disease, Will responded “MDS? I’ve never heard of it”. After bouts of tears and upsets, he was ready to face his new battle.

However, when Covid19 struck in the winter, Will faced the same uncertainties as all our patients: “What happens now?” “Will I still be able to access my treatment?”

If Covid wasn’t around, I’d be coming to the end of my first chemo cycle

“It’s a long waiting game for now. I’ve had fortnightly bloods and biopsies, but they won’t admit me while I’m stable as it’s too dangerous. If Covid wasn’t around, I’d be coming to the end of my first chemo cycle.”
“My brother has had his bloods checked and we are waiting to see if he’s a match. Meanwhile, I had a cameo on Sky news to promote MDS and it certainly worked.”
“Twitter is a great platform. When the PM put out the details about shielding and I made a post about my chemo, the journalist from Sky messaged requesting an interview.”
“At first, you get shocked seeing yourself on TV but I got really good feedback from people congratulating me and saying that awareness of MDS needs to be spread more.”

A Massive Thank You from MDS UK Patient Support Group

Will is right. This is an incredibly challenging time for all MDS patients and their loved ones, who, like Will, have seen essential treatments postponed.
We would like to thank Sky News for advocating this story, raising more awareness of MDS- an unenviable disease.
And finally, a massive thank you to Will- who used his struggles with MDS to speak out. You’re a trooper! We hope you get your chemotherapy ASAP and that your brother is a match!

Please do send us your story – whether you are a patient, family member or friend:
Email it to info@mdspatientsupport.org.uk, 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.


Graham Cheyne: “My CMML may give insight into a way forward in treatment”

I sat with a diagnosis of CMML, feeling perfectly well and not knowing what to ask...

On the 27th of August 2019 I attended York District Hospital, Haematology department at the Magnolia Centre for results of a Bone Marrow Sample I had provided following results from routine blood tests which had revealed abnormalities in two of the readings.

After another blood sample was taken prior to my consultation with my consultant I felt a little suspicious of what was to come. This suspicion increased when the consultant entered the room with a nurse who she introduced as a specialist nurse.

My consultant told me in the best way she could that I had a condition which was Chronic Myelomonocytic Leukaemia. I knew straightaway in my own mind that this was probably a life ending form of cancer which was confirmed by being told there was no cure.

Here I was sat with a diagnosis of CMML, but feeling perfectly well, mentally and physically, but not really knowing what questions to ask other than probably the one most people ask, how long left have I. Being told it was a question that couldn’t be answered at this time as further tests were needed to be carried out and it was only chronic.

Graham Cheyne

The website was invaluable to me to increase my knowledge of CMML

Not having a clue what CMML was other than some form of cancer of the blood I couldn’t formulate any questions to ask so the consultation was over in about ten minutes. I left the room with the Specialist nurse giving me a Bloodwise folder with various pamphlets of the hospital services and a leaflet explaining the ins and outs of having CMML.

My next appointment was arranged for the 25th of October 2019, with advice to contact the Specialist Nurse should I need more information or if my health status alters.

I think it was at this point I made a conscious decision the way forward for me was to be positive in dealing with this blip in my life. However, this was not going to take over my life, thinking about it all the time and possible outcomes and when.

Over the next 7 weeks I had plenty of time to investigate CMML and I gained a great deal of insight into what the future may hold for me. Reading people’s experiences on MDS UK Patient Support Group website, of how they have managed their lives gives me optimism going forward.

The website was invaluable to me to increase my knowledge of CMML not only of the condition but what is being done in respect of treatments and patient care and research by the medical profession. Additionally, I learnt I lived within 30 miles of a Centre for Excellence for care of MDS with a specialist in CMML.

On the next appointment I was armed with three questions to ask

The appointment on the 25th of October 2019 arrived despite my naivety on my last visit I was now more knowledgeable of most things with CMML and was only armed with three questions to ask.

After the now routine blood sample given below and analysed, I saw my consultant who this time had another nurse with her, only this one was a research nurse.

I had also brought my wife along as she has been a tower of strength in helping me deal with this setback in my life. The consultation started with how I was feeling which was pretty much the same as the last time we met. I was told my blood result were okay (only the fact they were like the last test), everything was positive, regenerating my optimism.

My three questions were
1. Could I have an additional opinion with Professor Bowen at Leeds?
2. Could I still be an organ donor?
3. Could I have copies of the results of my recent blood tests.
The answers were 1. Yes 2. No, but maybe my corneas 3. Yes

I had no hesitation in agreeing to take part in the European Registry

I was then asked if I would take part in A prospective, multi-centre European Registry for newly diagnosed patients with Myelodysplastic Syndromes (EUMDS). I had no hesitation in agreeing to do this, hoping it may help somebody in the future, in my predicament. I was then left in the care of the research nurse to explain the process after which she gave me a six-page document to read and sign if I was in agreement. We then decided for an appointment the following week.

At the appointment I did two tick box survey forms nothing difficult also gave a blood sample which the nurse explain had to be frozen within an hour and after that they would be despatched to a centre in Switzerland where they stored for the research. We then needed to arrange another appointment in six months’ time which coincided with my next visit to the consultant.

After my details had been entered onto their computer system, I am formally now an ID code – UKYORK + a number. Whilst I am unable to donate my organs it’s good to be able to donate my later life history, hopefully the progress of my CMML may give some insight into a way forward in treatment in the future.

Please do send us your story – whether you are a patient, family member or friend:
Email it to info@mdspatientsupport.org.uk, 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!

Read the latest patients stories

Share your experience and questions!


Rebecca’s Story: Three Years after her Bone Marrow Transplant

In 2015 I walked into a consultants room expecting some new prescription or the ‘we don't know’ I had been hearing for past seven years. But this appointment was different. That day I would finally get a diagnosis and even though it was shocking and terrifying a sense of relief was there as finally I had answers.

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Kevin’s Story: at 70, with MDS, and an avid adventure cyclist

I was diagnosed with MDS in 2013 at the age of 64, after 18 months of various tests and investigations. I remember feeling relief at the diagnosis, finally having a name for my condition put an end to the uncertainties and frustrations that my symptoms had evoked.

Read More


Kes Grant tells us how it feels to live with MDS

"I have lived with blood cancer (MDS) for 19 years, officially, being diagnosed in 2000, but I had test to query it a couple of years before that. This was highly unusual at the time because people that was diagnosed with my type of cancer (MDS) were actually older than me, in their 60s / 70s / 80s. But I was a young woman, in my thirties. So it wasn't what they were looking for."

Read More


Fiona Cherry MDS story: My journey to a diagnosis

In 2017 at the age of 38, I was diagnosed with Familial MDS. It came as a bit of shock and took me a while to get my head around it, but my journey to this diagnosis started many years prior to this.

Read More


Adrian, husband of Emma, who was diagnosed with MDS in August 2018

Emma's diagnosis came as a shock

Emma was diagnosed with MDS in August this year, which came as a bit of shock. She has been unwell for a few years, and has been sent to the haematology department annually for 4 years.

We went to the results appointment expecting to be sent home with a flea in our ears again. But it was not to be, the Dr informed us that Emma had MDS, but couldn’t give a fuller explanation due to some further tests waiting to be carried out. She told us that MDS was a journey, and that it would ultimately lead to AML, and then death if she didn’t have a Stem Cell transplant. We left the hospital in a daze and Emma broke down.

Whilst we were outside she said the most British thing I have ever heard: she said that what she needed was a cup of tea.

A Bone Marrow Transplant is the only cure for MDS

If you’re in good health, sign up to be in the register and you could be a lifesaving match for someone with blood cancer. All it takes is a bit of spit or a swab!

A holiday overshadowed by the diagnosis and how we found out about MDS UK Patient Support Group

I was due to fly back to Cyprus where I was working the next morning. I worked at the Royal Air Force. They were understanding and let me have some time off.

The family had planned a holiday to Cyprus, which we duly went on, but it was overshadowed by the diagnosis, and we couldn’t tell the children as we were only half aware of what was happening. Whilst being away, we googled the condition a lot and the information we found was complex and scary.

My Brother in Law, Keith got into researching and found MDS UK, and he made contact with Sophie. She explained to him what it was and Keith then relayed to us. It was a worrying time.

Thanks to MDS UK we had Emma's condition explained by a specialist

On coming back to the UK, we were able to get an appointment through MDS UK and York Hospital to see a specialist in Leeds, Prof Bowen, who was able to give us the results of the cytogenetic tests.

Having Emma’s condition explained by a specialist helped a lot. He gave us the correct information, although not great, it still helped. Emma is on a watch and wait, where she will have her bloods taken every 4 weeks. This is always going to be a worry, but I’m glad that we are now under the care of the specialist team.

MDS UK Patient Support Group

If you or someone you know is affected by MDS, give us a call. We can do a lot to support, from putting you in touch with fellow patients to providing you access to MDS Specialists


Russell Cook: “The diagnosis has given me an enormous focus, it’s made my family much closer”

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….

Russell Cook Running The Cabbage Patch
Russell Cook Running

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

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.


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