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Stephen Andrews: “I am looking forward to getting my new set of Covid jabs”

How a random blood test led to a high-risk MDS diagnosis

My MDS story began just under two years ago. I was a normally healthy 71 year-old (or so I thought): I had no symptoms and I was still jogging a couple of times a week. I just happened to have a random blood test which showed that I had a low white blood cell count.

My doctor son saw the results and strongly advised me to consult a haematologist. That led in turn to bone marrow tests, which showed that I had high-risk MDS (MDS-EB2).

After a stem cell transplant in May 2021: "I’ve been very fortunate"

Stephen Andrews

The pandemic delayed some of my treatment, but eventually, after five cycles of Azacitidine (plus Venetoclax), I had a bone marrow transplant (from an unrelated donor) at King’s in May 2021.
 
Since being discharged nearly three months ago, I’ve had a couple of weeks back in hospital with infections, but generally I’ve been very fortunate, avoiding the worst of graft versus host disease (GvHD).
 
My post-transplant blood and bone marrow test results have been positive and, all being well, I am looking forward to getting my new set of Covid jabs within the next few weeks.

A big THANK YOU from MDS UK

Stephen and his son Tom have been amazing participants in last year's 20for20 campaign, raising an incredible £13,848.00, thanks to their wonderful and generous donors.

Take a look at their pages and the lovely messages of support Stephen received!
https://www.justgiving.com/fundraising/Stephen-Andrews8
https://www.justgiving.com/fundraising/TandyMds

Thank you again Andrews family, friends, colleagues, supporters!

Team MDS UK

Feeling inspired? please consider joining our 20for20 campaign too!

It is easy to do - and every pound raised will help our charity maintain our services to MDS patients, as we continue to struggle through the financial impact of the Covid-19 pandemic.

Be our hero! Join our 20:20 campaign and fundraise for MDS UK


Simon Wilkes: “Hopefully so many lives will be saved!”

"I contacted MDS UK as I needed to know more about my condition"

I was diagnosed with Myelodysplastic Syndrome back in September 2013 after suffering with fatigue and tiredness.

At that time I was a football coach at a local Youth football club ,Withymoor Colts, which had 34 children's football teams. I was also youth team coach at my home town club Stourbridge F.C., as well as being a football referee on Saturdays and Sundays.

All this had to come to an end as I hadn't got the energy to do it. Within 6 months of my diagnosis I contacted Sophie Wintrich at the MDS UK Patient Support Group as I needed to know more about my condition.

The MDS UK Patient Support Group were so supportive. Luckily for me my MDS was stable: I just had to adjust to a slower lifestyle. Within MDS UK's site I read stories of patients far far worse off than myself and I also discovered Anthony Nolan's Charity. I read inspirational stories on there about the work Anthony Nolan does and the patients it helps.

Simon Wilkes

My first events in aid of Anthony Nolan and MDS UK

Being quite well known in the local area, I decided to get involved with a local charity which also carries out wonderful work: Mary Stevens Hospice. They hold a massive community football game annually at Stourbridge F.C., so I already had links there. I approached the organiser if I could play in the game (I hadn't played for 10 years!) and get people to sponsor me and raise monies for both Anthony Nolan and MDS UK.

I also enquired with Anthony Nolan about them attending the game to take swabs and add young people to the stem cell register. 22 signed up on the day which made me so proud. I played five minutes of the game and we raised almost £1000 which was split between the two charities.

Tragedy struck and our Olly passed away

Eleven days later tragedy struck our family and our Olly passed away. Absolute total devastation, which shocked the whole community. Almost 500 family and friends attended our Olly's funeral. All donations again were split between both charities. Our boy is missed so so much and 4 years on we are still in shock.

From Anthony Nolan's swabbing event, 9 months later, one of Olly's friends had the call from Anthony Nolan and was found to be a match. Matt Beveridge was a local hero, his story was featured in the local press and on local radio. Matt's Anthony Nolan story is on the video below. He was later to find out he had saved the life of a young Spanish lady.

As a family we had decided to organise events in Olly's memory, a legacy for him

As a family we had decided to organise events in Olly's memory, a legacy for him. The news regarding Matt Beveridge's stem cell donation prompted me to invite Anthony Nolan to a huge football tournament we organised with our extended football family, Withymoor Colts, whom Olly had played for for 15 years. We raised over £10,000 which was split between PKD Charity, Birmingham Childrens Hospital and The Iyla Rose Foundation, also towards a memorial to our Olly.

On this day 52 young people signed up to the stem cell register including Sam Astley. The OLLY WILKES MEMORIAL FOOTBALL TOURNAMENT the following year, 2019, was huge, we raised money for PKD Charity and supported another campaign close to our hearts, THE JUSTICE FOR RYAN PASSEY CAMPAIGN. Unbelievably, we raised almost £11,000 with the help of volunteers from Withymoor Colts. I again asked the Anthony Nolan swabbing team to attend, with 18 signing up on that day.

We arrange other events in Olly's memory annually. Unfortunately the pandemic has meant the annual memorial football tournament hasn't happened for 2 years, but next year's is already planned for Saturday 18th June 2022, again supported by Withymoor Colts.

I started the publicity regarding Sam Astley's call up to be a match on 6th June. I was so excited and emotional that Sam was the 2nd person out of 92 to potentially be a lifesaver. I asked Sam if I could go public with his story on Facebook which he agreed to. I just wanted to raise further awareness of stem cell donation. I asked local newspaper Stourbridge News if they could give us some coverage, and Chief Reporter Bev Holder gladly obliged. Our story, Bev's story, went global.

Sam Astley and Beth Hill have done us so proud, what incredible ambassadors for us as a family and Anthony Nolan. Unbelievable. I personally will be forever in their debt for the amazing way they have conducted themselves in front of the media. Their parents are so incredibly proud and so is the country. What a legacy to send to our Olly in heaven!

Hopefully so many lives will be saved through those remarkable young people who sign up to the stem cell register.
So glad we have been a part of it.
Simon, Lynn & Ben Wilkes and our Olly in heaven

He shoots, he scores, he saves a life! Read Sam's Story

Sam Astley opted to donate his stem cells instead of attending the England football match!

Sam decided to register as a stem cell donor, thank to our long term MDS UK Patient Support Group member Simon Wilkes, who was diagnosed with the rare blood cancer Myelodysplastic Syndromes several years ago.

Read the latest patients stories


Frank Jones’s story: an optimist by nature

I deduced it had to be poor iron retention...

I suppose my story started 3 or 4 years ago when my wife Alison and I were living on our narrow boat and cruising around the country's canals. I had a blood test for something – no idea for what now – but it threw up that I was a bit anaemic. Because I wasn’t a regular patient of the practice they weren’t inclined to do anything about it. Nor did they alert my home practice in Cornwall apparently.

Fast forward to Feb 2020 and by now living back ashore just outside Wadebridge I asked if I could get a gym referral to get fit because I got out of breath easily and was overweight. I got one, plus 12 sessions with a personal trainer, which finished just before lockdown. My fitness level had increased and was maintained by daily walks with the dogs.

In September 2020 my GP asked for another blood test due to me once again getting breathless on short walks and feeling tired at times. A telephone consultation let me know I was anaemic with a Hb of 87 and he suggested I call in at the start of the following week. The weekend saw Google being hit with regards to anaemia and I deduced it had to be due to poor iron retention because I had a good diet.

The GP quickly disabused me of that and told me I had MDS and he would refer me to haematology at Royal Cornwall Hospital Treliske. Once again Google was used and MDS UK was found. After I contacted them, Sophie rang me and we chatted for over thirty minutes during which I learnt a lot about what MDS was.

I chose to go for gold and said I’d go for the Stem Cell Transplant

My consultant appointment happened very quickly and Dr Adam Forbes was impressed the GP even knew about MDS but needed a biopsy to accurately say what I had.  That showed I had MDS EB – 2, 11% blasts.

What did I feel about having a life threatening illness?  I was sad that my expectations about living to a ripe old age, the same as the rest of my relatives, may not happen.  As far as I recollect I didn’t feel angry or bitter but I decided I would take whatever happened and deal with it as it happened.

I was then passed to Dr Pottinger, also at Treliske and we discussed options.  At 73 there weren’t many options available – 2 to be exact.  One was to have azacitidine and the other a stem cell transplant.  To my way of thinking that boiled down to delay the onset of leukaemia and then die early(ish) because I would then be too old for Stem Cell Transplant or go for an Stem Cell Transplant with all the possible problems.  I chose to go for gold and said I’d go for the SCT.  I had a couple of blood transfusions in November.

Next appointment was with Dr Hunter, the SCT consultant at Derriford hospital Plymouth, in January 2021 who did a lot of tests including checking my mental state and said I was suitable for a transplant.  They found around 80 possible matches straight away.

You Can Become a Donor!

Even if you’re older than 30 you can become a stem cell donor if you're in good health. Check your eligibility at the dkms site

How to Join the Register? All it takes is a bit of spit or a swab!

I am optimistic by nature and was told whilst in hospital that a positive attitude goes a long way to aid healing

Late February saw me as an in-patient at Treliske for the first of two episodes of chemo as part of a trial and I stayed for just over five weeks, mostly in isolation.  Three infusions of chemo on days 1, 3 and five and then monitored to see what happened.  The side effects I got were very small - a mild mouth problem for a couple of days, a rash which did nothing other than discolour my skin and one infection which was quickly hit with intravenous antibiotics.  I felt like a bit of a fraud really because I didn’t feel unwell, and other than when I had the infection seemed quite OK.

At this point maybe a little more about my philosophy of living would be in order.  I have a belief that there are many things in life I have no control over so once I’ve done what I can to minimise their impact upon me I let them go and move on; my MDS is one of those things.  I trust that if I do all that is expected of me and that the medics do their part, the rest is in the lap of the gods.  I live with what hand I am dealt and only deal with stuff one day at a time. Yesterday has gone, tomorrow isn’t here so I can only deal with today’s issues.  I am optimistic by nature and was told a few times whilst in hospital that a positive attitude goes a long way to aid healing.

Around the middle of April I was admitted for the second round of chemo and was allowed home a few days after the third infusion. I came out of Treliske after that lot of chemo earlier than I expected due to being in remission – still not fully understanding what that term means.  On the 2nd May I felt a bit disoriented so rang the 24 hour neutropenic line and was told to get to A&E, whereupon I was admitted with an infection and spent nine days back inside.

Between then and now I had one lot of bloods and one of platelets with my Hb levels holding their own and the others getting better.

On the 1st July I get my picc line changed for a Hickman line and go into Derrifiord on the 7th July for pre STC chemo etc, with the transplant taking place about the 13th/14th.  My donor is a 32 year old lady from Germany and we have a 10/10 match, even down to her having the same viral imprint as me. My humorous side nearly got the better of me when I heard this, but I managed to rein it in because I’m not sure the consultant would have appreciated it.

Stay strong folks.

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


Kate, with MDS RA-RS, determined to keep fit and healthy!

Kate, diagnosed with MDS RA-RS in July 2020

I am fit and healthy! Well... so I thought!

I'm Kate, 48yrs from Yorkshire, recently diagnosed MDS RA-RS in July 2020 - found out by complete accident as I had no symptoms.

January 2020 - went to the Dr as my chiropractor asked me to get a blood test to check for inflammatory markers - I had an ongoing severe muscle spasm in my shoulder. I think she was thinking rheumatoid arthritis or some other issue - I have arthritis (shoulders/hips) but that's mainly wear and tear and have other joint issues as I was a jump-jockey in my younger years - fell off a lot at speed! Self inflicted torture? depends how you look at it 😜 .

Anyway - the bloods came back anaemic but with higher iron than is normal - so by March 2020 I was having another blood test - I wasn't worried - didn't have any symptoms and was just a bit tired sometimes. I am currently a Pilates Instructor/Personal Trainer so I am fit and healthy! Well... so I thought!

Then we went into lockdown - I did push my Dr to redo bloods - she said I had large red blood cells but thats all I was told. So I then asked for a hospital appointment as I wanted to know why .... eventually was referred to Harrogate Haematology on April 2020 - this was cancelled until July because of Covid. By July I was slightly worried but I felt ok. Still no symptoms just a bit tired.

Diagnosis day 16th July and I was utterly floored!

After a phone consultation, they got me straight in for a bone marrow biopsy the next day! and more bloods and then I had a 3 week wait which was terrible. I was now very worried and thought I had some sort of multiple sclerosis (not sure why - must have been googling) Do not do Dr Google!

Diagnosis day 16th July and I was utterly floored! I really didn't have any symptoms but once I was told I was anaemic I sort of became it! The Macmillan at Harrogate were so lovely and really helped me the first few weeks - I was all over the place 🙁 .

So I have MDS/RA-RS large red blood cells - too large and iron over normal levels but still anaemic - no treatment just a watch and wait.

In August I went to visit the awesome Professor Bowen. I felt so much better having seen him

By August I had got my head around it all and went to visit the awesome Professor Bowen at Leeds Centre of Excellence. I was terrified! He could see I was terrified and put me at ease straight away. I got my bloods checked again and this time I wasn't anaemic - madness.... we had a long chat and I felt so much better having seen him face-to-face. I am currently still watch and wait.

December 2020 and March 2021 bloods remain stable, still slight anaemia. I am now doing more exercise than ever! I am determined to keep as fit and healthy as I can and can honestly say I have never been scared of anything until last July! 

I haven't let Covid stop me working and I am now teaching online (ZOOM) pilates to a few small groups - I am happiest when I am helping others. 

I am a lower back pain focused teacher and have several clients who have survived breast cancer and some who have managed to reverse their osteoporosis.

I have not shared my condition with my clients just yet as I feel they will treat me differently and it hasn't affected my work. I do have tired days and sometimes breathless but I am not sure I would have noticed if someone hadn't told me ! 

I often do charity events and have recently been running every day for the January RED that I do annually - I did manage to raise £350 for MDS charity for my last birthday and will continue to help when I can. I have really valued the Facebook group and zoom cafe sessions - I no longer feel alone with this mad disease, so thanks for the comments online.

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!

You are also invited to join our forum, a lively community of MDS patients sharing their own experiences and questions.


Bergit Kuhle tells about life after her diagnosis in her book “Out of Shape”

Order a free copy of "Out of Shape"

"Out of Shape" by our friend and long-term MDS patient advocate from Germany, Bergit Kuhle, tells her story of life after an MDS diagnosis. In the book she describes her experience of living with the disease, her coping strategies as well as her work as a patient advocate.

It is also an invaluable source of information for patients, as Bergit tells of her 15 years with MDS, and how the understanding of the disease has evolved, while remaining still, an incurable disease.

Bergit-Kuhle

If you would like to read “Out of Shape”, please email membership@mdspatientsupport.org.uk

The book is completely free of charge, but if you wish to support MDS UK work and activities, we'll gratefully accept any donations, however big or small.

Comments by patients who'd read the book:

Dear Caroline, thank you for sending the book. It was a stimulating and refreshing read which can only be of great and lasting benefit to all MDS patients what ever stage they are at in the disease process.

To cover a little of the costs I have made a donation through just giving. Hope you can get the tax back before the government runs out of money.

Best regards,

Graeme

____

Dear Sophie

I have just finished reading the above publication for the 2nd time in the past week.
The reason I have read it twice is because I found it a fascinating read, and just in case I missed something the first time.

I was able to relate to all the problems the author is going through and it shows that we all have the same experience’s whether it is trips to see consultants, the medication we have to take day in day out.

I can relate to the feeling of continuous pains throughout the body, the lack of energy and always being at the back unable to keep up and in my case being unable to hold down a conversation while walking as every breath is needed just to carry on walking.

Every sufferer from MDS and there families must make a point of getting hold of the publication and reading it fully and keep it for future reference, I have highlighted and marked pages that refer directly to me and ones I feel I may need in years to come God willing.

Please pass on this email to the author as I feel she needs to know what an impact it has on our lives and how helpful it is a guide and reference.

Many Thanks. Please Stay Safe

Michael Bower

Out of Shape Books

Anna Sherratt

Update January 2021

Very sadly, we heard that Anna passed away. We are unsure of exact details at the time of writing, but will be updating the information if we receive further information.
Ever since her early contact with us in 2016, Anna had been a fabulously active and supportive member of the Oxford MDS group, as well as the nationwide charity.

She will be enormously missed by all.

We send her husband, family and friends our deepest condolences.

Anna Sherrat and Roger

First symptoms... And an MDS diagnosis

Back in August 2015 I was noticing how tired I was. I would sit down in the evening feeling totally exhausted and then castigate myself mentally that I hadn't accomplished everything I had planned to do. Was there something wrong with me?

I had reacted badly to a bee sting in May which ultimately led to a full blood count being taken in August 2015 and a referral to see Haematology. Within ten days and several more blood tests at my GP surgery I was in front of a Consultant in Haematology. I received the news that something was not right with my blood counts and there was to be further investigation.

Over the next three months I became an Internet junkie, scrutinising every site I could find relating to blood diseases. My husband became increasingly concerned as I frantically searched for answers.

I had my first blood transfusion in September 2015 and felt so well after it I realised my blood counts must have been dropping slowly for sometime.
When asked what my symptoms were by the Consultant in my first meeting I had told him I wasn't ill, just old and fat! After the initial transfusion I felt like my younger self which made me appreciate that I was unwell.

The diagnosis and my Internet obsession

I ended up having a bone marrow biopsy in September followed by a second in December. My case wasn't clear cut and various possibilities were considered namely MDS, Aplastic Anaemia and Lymphoma. It wasn't until mid January 2016 that my MDS diagnosis was confirmed.

Armed with this information I threw myself into intensive internet research relating to MDS. The web forums were informative but I felt like a voyeur rather than a participant. On reflection I don't think I could really reconcile how it related to me and I can honestly say I had never felt so lonely in my life.

Some stories terrified me and for all my research MDS remained a mystery. Every personal account seemed to differ so widely and I struggled to find a common thread that related to me. At that stage I didn't know my specific diagnosis of RCMD or what any other diagnosis's meant. I felt completely inadequate as forum writers signed off with letters indicating their specific diagnosis and/or treatments. It was almost like there was a club that existed with other people like me but I didn't know how to be a member. This was entirely my own perception though and not how anyone made me feel.

My husband seriously threatened to ban me from the Internet as he viewed my obsession unhealthy.

From left to right looking at the picture are my siblings and me:
Christopher , my 100% match eldest brother
Rachel my elder sister and then me and my twin Gordon.
They were all tested and very keen to help me but only Chris matched me.

The day I picked up the phone to MDS UK Helpline

On one of my web searches I came across the MDS UK Patient Support Group website – and decided to ring for extra information and possibly some help.
I can honestly say picking up the phone to the MDS UK helpline was a game changer for me. I felt that I wasn't weird having an illness no one has ever heard of.
Sophie, the Patient Liaison, listened to me, answered my questions, asked me questions and reassured me and made me feel part of a community and not alone. She also helped to put me in touch with their nearest local group. I was elated when I had finished that phone call.

I went to my first local meeting and met people like me who all look completely normal but they all had MDS or had partners with MDS. I started to fully appreciate how different everyone's MDS experience is. I also met Sophie as she was at my local group that week.

My advice

I now have greatly reduced the time I spend on the Internet searching. It hasn't stopped completely but I dip in and out to clarify meanings of results and words.

I have had 9 transfusions so far since September 2015 and I still get tired the week or so before a transfusion but life is readjusting to my new normal. If I could look back and offer any advice to myself or anyone else I would say speak to Sophie and MDS UK as soon as you have a diagnosis.

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!

You are also invited to join our forum, a lively community of MDS patients sharing their own experiences and questions.


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


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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