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Athar Jamil

A journey of hope - my unfinished story!

Nelson Mandela once said “The greatest glory in living lies not in never falling, but in rising every time we fall.” In truth, life is not a smooth sail; we don’t know what tomorrow brings. It is a crazy ride, where nothing is guaranteed.

I had 55 years of smooth sailing in terms of my career, health, and family life before I hit a roadblock. On 30 January 2023, I was diagnosed with bone marrow cancer Myelodysplastic Syndrome (MDS RCMD/EB1) with a medium survival prognosis of 4.6 years (Oncologist at Hammersmith Hospital). The diagnosis followed a routine blood test, which came as a big shock for me and my family, as at the time I considered myself fit with no symptoms whatsoever. I was playing weekly football, cycling to work and walking approx. 5 miles daily.

Until this point I always thought I had control of my life, but this belief quickly started to unravel. The doctor’s room spun wildly as I grasped my wife’s hand. I had not even asked the doctor how long I would live. I could not even pronounce this cancer, let alone spell it. One of the most difficult aspects of this type of cancer is its rarity. I personally don’t know anyone with this type of cancer, but through the NHS website and social media I have heard from people all over the world. This type of cancer generally happens to people above 60 years, so it had caught me early! I think one of the hardest things about being diagnosed with this type of cancer is knowing it is treatable in some cases, but generally is not curable. It is unlike other cancers such as certain types of breast cancer, where survivors are encouraged to “ring the bell” when they finish their chemotherapy. We never get to the ring the bell because the only cure is a bone marrow transplant, and not everyone is eligible.

It was an emotional roller coaster ride throughout the first couple of months, i.e., learning to cope with this new reality of life. We always have some blind spots in our life which we rarely see (or don’t want to see or think about), but I have to say this uncertainty towards life helped me discover other perspectives of life which I never considered before. My senses of optimism, resilience and perseverance. Values which I always passionately believed in as an explorationist really helped me manage my emotions, giving me the courage to stand up and face the challenge ahead instead of giving in.

I decided to go for a second opinion at Kings College Hospital London, which is a renowned Centre of Excellence for this particular type of cancer. Here I met Dr Austin, smart, compassionate and one of the most fantastic professionals I came to know. I could never have made it through this journey without him. In Dr Austin’s experience, the only potential cure of this disease was a stem cell transplant, with a success rate of around 50%. Stem cell transplant itself is a complex process involving a donor’s cells and has its own risks. Finding a right match from a potential donor was the most challenging and stressful part of the transplant. In the doctor’s experience there was 1:4 chance of a match in siblings and 1:100,000 outside of siblings.

A cancer diagnosis either makes you resigned or determined. I wanted to be in the percentage that survived, so, I said, “let’s do it.” For me, the choice was simple - either survive around 4.6 years or live a quality life greater than 4.6 years with a 50% chance of success. I opted for the latter, accepted the risks of failure, and decided to fight. I started feeding on the positive aspects of my affliction. For once being middle aged works in my favour as the chances of a successful transplant improves. Having no underlying serious health conditions was also a positive factor. I could have my treatment at one of the best hospitals. To top it off, following a long and nervous wait, it turned out that my younger brother (who also lives in London) is my best donor match!

My treatment regime started on 17 April 2023, comprising of daily visits to the Haematology Unit for chemotherapy. The objective of the chemo was to eradicate cancerous cells ahead of the transplant. This proved a bit intimidating, but it was my first step to beating this disease. The assigned specialist nurse was amazing in looking after me and made sure to take me through the pre-transplant phase smoothly and safely. Fortunately, I did not encounter terrible side effects associated with chemotherapy, apart from an infection which hospitalised me for a couple of weeks. We were lucky to achieve the desired results within a month and a half, against the doctor’s expectation of three to six months. In the meantime, my younger brother turned out to be a perfect match, so he donated his stem cells. I was admitted to hospital on 25 June 2023 for a stem cell transplant. Following another phase of aggressive chemotherapy (conditioning) for nine days, I had my stem cell transplant on 4 July 2023, the day I was reborn.

In the days and weeks that followed, I experienced a number of expected effects, including diarrhoea, nausea, mucositis, hair loss and stomach pain. Those were the toughest weeks - in isolation, laying on the bed unable to speak, eat and struggling to even stand up. It became increasingly difficult for me to eat or even think of food as I lost both my appetite and taste. Around me, I could hear the cries of patients in pain in the ward I was in. I desperately waited for the daily blood report every morning to see if my blood counts started to show up. Even a tiny indication of the cells in the report brings hope, energy and excitement. This was the time I realized “it does not matter what I have in life, the thing that matter most is who I have now.” Anticipating this situation in advance, I had already decorated my room with pictures of my family and friends which really helped to keep me going. For the first time I realised how important the beauty of blue sky, sunlight, and nature is (things we always take for granted) as I was unable to gaze out of window of my room for weeks.

But my care team’s bedside manner could not have been warmer, friendly, caring or more professional. I knew I was in the right place and in safe hands. I cannot thank enough the entire NHS team. I had my day-28 bone marrow biopsy before finally being discharged from the hospital on 1 August 2023. I was so excited to be going home on what was the birthday of my eldest son. We had a big welcome back home celebration, including a family dinner at home that evening.

I am now under the care of the post-transplant team. It is taking a long time to get rid of the side effects of aggressive chemo. I lost my thick silky hairs which have slowly started to grow (though they are still grey!) and my appetite is also coming back. The frequency of visiting hospital gradually reduced from twice a week to once a month. My blood counts were holding up and the results of other necessary parameters were also encouraging. Things were steadily returning to normal until 27 November 2023 when my blood counts fell off the cliff suddenly and I had to go back to the hospital for a week. Despite the doctor’s best efforts to stimulate the bone marrow through GCSF injections, for eight days there was no response. Doctors were of the opinion that either my disease is coming back, and the graft is heading to a failure, or the Covid vaccine had caused some side effects. This brought me again to the crossroad of life with an uncertain future. However, things turned around again, and I was back on track on 12 December when my blood counts came up normal. My “journey of hope” continues with grit and grace. I know it won’t be smooth, I am prepared for any unforeseen bumps along the way. Hopefully, the toughest part of my journey is behind me, firmly in the past!

I am so grateful today for the doctors and care staff at Kings College Hospital. After being told by doctors elsewhere that I didn’t have much time left, I now find myself in remission. These NHS doctors and staff literally saved my life by delivering incredibly personalized and highly professional care at the highest level possible. I have been in constant touch with so many friends through messages, calls, and even personal visits throughout this journey. The support of my company, my colleagues at Tullow and in my exploration team, aided my fight. Now, approaching 12 months since diagnosis, I am already back to work, meeting my colleagues and friends. I am also looking forward to starting weekly football soon and can’t wait to try bowling action in the next cricket season in the summer.

My journey of hope is not complete yet and neither is my story. To get to the end of the story might take another year and half. Hopefully I will be around to share the end of this story, but if not, I am sure my friends and family will share how bravely I fought!

Having cancer has made me look at things very differently. Sitting in traffic, for instance, no longer bothers me. Standing in a queue just gives me more time to think about how lucky I am. I am still around with a hope to live a longer and healthy life. I am much more content and satisfied with what I have so far in my life. The only regret, if I can, is missing the graduation of my son who recently passed engineering degree.

I have a few learnings to share which helped me navigate through the ‘storm’

Stay positive, be patient and resilient: Positive attitude and optimism will aid navigation through the most challenging crisis in life. Nothing stays the same forever in life; it all passes with time, as does the pain and our crisis. Always remember, “life consists of two days, one for you and one against you. So, when
it’s for you don’t be proud or reckless, and when it’s against you, be patient, for both days are a test for you.” I followed these basic principles when I was in acute pain, and it worked well.

Never give up hope: Life revolves around hope. Never give up, we only lose once we give up and stop fighting. As long as hope is there, we are alive. When all the odds were against me, I found one reason - a new & better life - to keep me going during my journey.

Invest in friends and family: Think of what matters the most in life. We need to work for a living, but we need family and friends to survive. Take care of your family and friends around you. They are the ones who will be at your side. Be honest with them, do what you can do for them and for others in your fun time. I have wonderful friends, they constantly stayed in touch with me. If someone asks me what is the single most valuable thing I have from over 21 years in Tullow? My answer is the friends and colleagues which are my real asset and a great support and inspiration at this point of time when everything else seems immaterial.

Reach out for help: Don’t be shy if you get stuck in life. Most people are good and want to help if they know. I know health issues are personal and most of the people don’t want to share it. I would not have support which I got from the friends, colleagues, and the company if I had not shared it.

Do your research but don’t over-search: It is good to know the diseases and potential side effects but going into it 24/7 could drive you crazy. The drug companies list every single side effect because they have to, but we may experience one, two or none at all. Look for successful stories and understand how other people went through the crisis. Keep in mind we all are different with a different destiny.

The late Joan Rivers has a great quote for people like us (cancer survivors where everything is so uncertain):

“Yesterday is history, tomorrow is a mystery, today is God’s gift, that’s why we call it the present.”

ENJOY LIFE!

More about stem cell transplants & related links on mdspatientsupport.org.uk

 

  • Stem Cell Transplants - A presentation by Dr. Victoria Potter, Haematology Consultant & Michelle Kenyon, Clinical Nurse Specialist, from King’s College Hospital, London.
  • Latest developments in Stem Cell Transplants - a presentation by Dr Beth Payne, Haematology Consultant at University College London Hospital.
  • A list of upcoming Patient Support Meetings from MDS UK
  • What is MDS? -  Accessible explanations of MDS and links to articles on symptoms, diagnosis & treatments
  • Become a Member of MDS UK - Membership is free and includes many benefits including receiving our Patient Handbook that provides clear and informative information about MDS

Further information about stem cell transplants

If you would like to know more about stem cell transplants, or to register as a potential donor, please visit the Anthony Nolan Trust: Saving lives of people with blood cancer | Anthony Nolan.


Lynne Elliot

Lynne's story - 23 years post MDS diagnosis and her life has turned out much better than expected.

In 2000 I had been breathless and tired (a problem I recall having on and off since the age 11 when I was found to be anaemic) and was referred again to haematology.

(Every now and then I would be referred to haematology in various places I lived, no diagnosis of a condition). This time I was diagnosed age 45 with MDS. My consultant did say it was a blood cancer but didn't explain prognosis and said I was very ill.

My husband and I were shocked on reading up about MDS. Talking to my consultant he gave the impression he thought my low risk MDS would progress rapidly.

 

I had transfusions then EPO injections which thankfully worked. My consultant did regular checkups and was always there when needed but avoided talking about prognostic scores.  He always said make the most of your life and the time you have.

We felt I wouldn't be here for my 60th and I am now 68 years old. All that worry each time you have a blood test, each time your blood drops really takes its toll.

One day, while talking to patients in the waiting room in a worse condition than me, I had a revelation that I could walk out of the hospital that day and be run over by a bus!  It has helped me to see my MDS differently, as a chronic condition to be managed rather than life ending. I'm so fortunate my progression is slow but always think of the many patients who are higher risk and have uphill struggles.

Lynne Elliott


Geraldine Hill

MDS – my story of a successful stem cell transplant, an illness, and a ‘miraculous’ recovery

Thanks to the brilliant team at Oxford’s Churchill Hospital, I celebrated the second anniversary of my stem cell transplant on 1 September 2023. I’m in remission now, but it has not been plain sailing…

At the tail end of 2019, my GP ran various tests because I’d been run down for a few months and prone to earache. That’s all. Of the usual various treatments, nothing worked. He’s an excellent GP and obviously suspected that something more was going on, so he referred me to The Churchill, an MDS Centre of Excellence.

Very soon after, early in March 2020, I was diagnosed as having MDS with excess blasts (intermediate risk). What on earth was that? I had no idea what the illness was, I’d never heard of it and I certainly didn’t know it could be fatal.

Later that same March, the UK went into Covid-19 lockdown and my partner and I lost all our work; we have our own business working in film and business development, mostly in the performing arts, and of course that all closed overnight. It was like falling off a cliff so high that it afforded enough time to see the view: no work, no income, a scary pandemic on its way (already here?), and a mysterious illness (already here!) that could strike hard at any time.

We sorted the practical issue of income fairly swiftly, and we could isolate from Covid – and thus for MDS – quite easily as we’d worked from home for decades. Thank goodness we had dedicated outside space, effective broadband and online grocery deliveries.

This is when I first met MDS UK. I was hungry for information and my consultants, specialist nurses and haematologists were both fantastic sources and incredibly supportive. I also spoke with Macmillan and Maggie’s, both of which provided excellent practical advice. But MDS UK gave information as well as access to other patients, and their perspectives and experiences as shared in zoom meetings were and remain both insightful and helpful. I remember my first zoom meeting with them: I could barely talk, and some of the time cried tears that hadn’t come before.

Everyone’s input combined to paint a far clearer picture of what we were facing. And along with more clarity, my strength and sense of humour returned – which is just as well, because I became ill at the end of 2020, severely neutropenic and with a serious abscess which had to be fixed before going any further. So now I was admitted as an emergency with neutropenia and/or neutropenic sepsis on a seeming loop, each time treated with strong antibiotics. I was also administered Azacitidine along the way, but that didn’t help me. So I had to wait until I was well enough to undergo a 5-week admission for CPX before truly getting on the path to transplant. Despite the strength of the chemo, I fared pretty well on CPX and came out the other side with a good summer ahead of me before Day Zero: stem cell transplant on 1 September 2021.

And all went well! My admission time was great, the people terrific, the food good, the Wi-Fi strong (I didn’t feel like reading, which is weird as I’m a voracious reader, but I caught up on a lot of films). I honestly felt fantastic – just a bit tired. I was discharged after five weeks and a couple of biopsies over the following months showed me as having an increasing percentage of donor cells. All was positive… I even helped cook Christmas dinner.

But that all changed. In March 2022 I started to feel weak. Come April, I went in for routine blood tests and obs but didn’t make it home for eight months: multiple, unidentified infections were crashing my system. I was given a DLI (a Donor Lymphocyte Infusion) but was told it would take 6-8 weeks to work – if at all.

I went from bad to worse. My partner was told I was suffering from a sudden, aggressive illness and on 4 June I was moved to Sobell House Hospice for palliative care. There was, apparently, nothing more that could be done, and my partner and my mum were told I had just a couple of days to live (I was told, too, but it didn’t really register).

I know that I had the very best of medical care, and I know that I was surrounded by love and prayers of all kinds, but without the photos and videos of visits, and the letters and cards that I look at still from so many family and friends from around the world, I’m not sure what I’d remember now of that time… Drugs and sleeping – a lot of sleeping – mean that I missed a lot. However, the physical mementoes I keep and revisit are not only beautifully poignant, they also help with my memory recovery.

But I do remember my hospice wedding! After 24 years together, it was co-organised very quickly by my now-husband, Neil, along with my Sobell nurses and a delightful celebrant. With flowers and even champagne supplied, I was wheeled in my bed out into the sun in a gorgeous rose garden, and there we tied the knot.

The period in Sobell House was and remains a kind of comfortable blur for me, not frightening at all, though apparently I did complain of pain. Of course my mum suffered horribly (we lost my dad some years ago and my brother lives in the Netherlands). And for Neil, 2021 and 2022 were a complete nightmare. He was with me 24 hours of every day, keeping me safe, keeping people advised of my progress, scheduling visits, working with medics and recording everything that happened along the way. So it was fitting that he’s the one who saw first the miraculous turn in my condition…

Because I got better. Just about eight weeks to the day of having had the DLI, I started to improve. Come July I was moved to Rush Court care home in Wallingford, and on my brother’s birthday, 4 November, I was home.

My last couple of biopsies have shown 100% donor cells but I’m still being monitored closely and continuously by my wonderful Churchill team. I do need ongoing physiotherapy to regain all the strength and stamina I lost, and I do have chronic GvHD of the skin, which is being treated by steroids and ECP (look it up: it’s bonkers!). But I continue to improve and I remain extremely well.

And the mad thing is that I’ve become an object of hope, validation – or something – to every single clinician I have met with since. I’ve been dubbed Mrs Remarkable, Mrs Miracle, The Comeback Kid, Unbelievable, Amazing, and much more besides. Going to clinic now is such a happy place to be! I feel blessed, and very very lucky…

If I sound upbeat, it’s because I am. It was an easy decision to choose to have the stem cell transplant even though the odds of success, and thus of living, were 55:45. It was a successful transplant, easily undertaken. It’s hard that I became so ill with infections afterwards and so close to death, but the infections were brilliantly treated and I’m now 100% on a clear road forward. If you’re facing a similar situation, all I can advise is that you trust in your specialists and in the process.

Things I’ll always remember

*The kindness of strangers.

*The dedication of the brilliant doctors and nurses at The Churchill and beyond who show such relentless scientific rigour and human empathy. I can’t praise them enough.

*The selfless donation of his stem cells by a 20-year old Polish man. Sufficient time has now elapsed in my recovery that I can write anonymously to thank him, via the Anthony Nolan organisation.

*The love, prayers and support of friends and family – it’s been truly humbling and I’m still in the process of thanking them.

And the biggest take-away of all: that I must do something to repay, in some way, this enormous gift I’ve been given.

Related links on mdspatientsupport.org.uk

  • A list of upcoming Patient Support Meetings from MDS UK
  • What is MDS? -  Accessible explanations of MDS and links to articles on symptoms, diagnosis & treatments
  • Stem Cell Transplants - A fascinating presentation by Dr. Victoria Potter and colleagues from Kings College Hospital, London, about Stem cell transplants that also touches on the topic of GvHD mentioned by Geraldine in her story
  • Become a Member of MDS UK - Membership is free and includes many benefits including receiving our Patient Handbook that provides clear and informative information about MDS

Useful Websites

Only refer to recognised organisations for information about your condition, for instance…


Chris Potter’s Story

It wasn’t Long Covid, it was MDS!

The summer of 2020 was a good one. It was hot, the sun was shining most days. I was on furlough, still being paid and I spent a lot of time sat in the garden, drinking cider and listening to music. Life was good. I remember questioning why retired people said they were always busy. I had things to do, of course, but I could ‘just do it tomorrow’ and that included going to the doctor.

I thought back to earlier the same year, February, to be specific, when I was in Tenerife with my son. We were visiting my parents who were on an extended holiday. Although there were no tests back then, I’m certain that I caught Covid just as we came back. A cruise ship was quarantined while I was there, which made the news. At the time, it was just a mystery virus that was spreading round the world that killed a few people and was highly contagious. I felt a bit rough but it was nothing I couldn’t deal with. A few paracetamols sorted me out.

Chris Potter

I had no problem walking up the hills while I was there, in fact I had no problem keeping up with an energetic 11-year-old. We would often walk ahead and wait for the ‘oldies’ to catch up, so I know I had no symptoms then.

I had a nagging feeling that something wasn’t quite right and did the obligatory internet search.  Tiredness or fatigue that interferes with daily life – Check.  Symptoms that get worse after physical or mental effort – Check. Difficulty breathing or shortness of breath – Check. Fast-beating or pounding heart – Check. Dizziness when you stand up – Check. Joint or muscle pain – Check.

I agreed with Google. It was obvious that I had ‘Long Covid’.

All the symptoms fitted and even when I eventually went back to work, I was breathless after going up the stairs and I got tired in the afternoons, to the point I had to have half an hour on the sofa when I got home each day. It became a routine that I thought would change when I got over my Long Covid.

Jump forward to 12th September 2022. I had booked an appointment with my GP. All my Long Covid symptoms were still present. The only changes were that my afternoon naps had evolved into an hour, sometimes two, sometimes more and I felt dizzy almost every time I stood up, rather than occasionally.

At about quarter to four, I shuffled the 500m to the GP’s surgery, having to stop numerous times on the way, to sit on a wall, or lean on a railing to catch my breath. “It’s just Long Covid and I’m fifty, so I’m knocking on a bit, this is normal, right?” I kept thinking to myself.

I had my blood taken and was told not to expect any contact unless there was something wrong. I shuffled home knowing that they wouldn’t contact me because I just had Long Covid.

At two minutes past ten that same night I was settled down watching the telly and got the phone call. “Hi, I’m the on-call doctor. I’ve got your blood test results and you need to go to hospital right now. Write this down ‘neutrophils 0.4’ and go straight to A&E”. “What are neutrophils?” I asked. “Don’t worry about that, please just get yourself to A&E” was the reply. “I’ll Google it”. “Please don’t Google it, just go to A&E”. I then Googled it and started to worry.

I went to A&E, which was surprisingly busy for a Monday night. There were all sorts of characters in there. Some were being sick into cardboard bowler hats. Some were clearly in pain, holding various body parts. Others were clearly drunk. There was an annoying chap in a wheelchair, who kept playing the beginning of the same song over and over and over again and my argument with him was the last thing I needed. There were families with crying children and a large bloke being escorted by two police officers. The only person missing was a child with a saucepan stuck on his head.

Thankfully, I was eventually seen by a doctor. He did a few tests and sent me home to get a couple of hours sleep, on the understanding that I would return for the day clinic at 08:00, in a couple of hours.

The day clinic was quickly followed by a trip to the haematology clinic with loads of blood tests and a bone marrow biopsy. It was at that point that I think I knew.

My biopsy results came back and I was told that it wasn’t ‘Long Covid’; this was a bit more special. This is MDS or Myelodysplastic Syndromes, a group of conditions where your bone marrow does not work properly and makes faulty blood cells. A type of blood cancer.

“Wow! I’m only 51, are you sure?” They were sure.

I’m now a year on, 5 sessions of chemo (Azacitidine) down the line, have a date for a bone marrow transplant and I’m optimistic for a successful outcome.

My point for these few words is that I don’t believe that I’m the only person to mistake something serious for ‘Long Covid’.

Please, everybody, if you’re not feeling 100%, go to the doctor. I got lucky, in that it was quickly detected with a blood test. If you put it off, you might not be so lucky.

What are the symptoms of MDS?

  • Weakness, tiredness and breathlessness (because of the low number of red blood cells)
  • Frequent infections (because of the low number white blood cells)
  • Bruising and easy bleeding (because of the low number of platelets)

If you spot the symptoms above, take next actions quickly. 

As with all cancers, fast action enables faster diagnosis and better treatment. For more see MDS Symptoms

Get a #BloodCount

One of the first actions you can take is to get a full or complete blood count (CBC). This is a straightforward blood test that can be easily arranged at your local GP. While your symptoms may not be MDS, it's wise to have the test to rule it out.

A Complete Blood Count (CBC) is a very common blood test that is often part of a routine checkup. The test counts the cells that make up your blood: red blood cells, white blood cells, and platelets and the results can determine if further investigation into MDS is required. If you see the signs and symptoms, get a complete #BloodCount

 

Complete Blood Count test


Tony’s story

Tony was first diagnosed with high risk MDS in January 2021 following blood tests he had for knee surgery that showed low counts and raised some alarms. He quickly had a bone marrow biopsy and MDS was confirmed.

At our first meeting the haematology consultant at our local NHS hospital explained clearly what MDS was, the risk that it would turn into AML, and arranged for Tony to start Azacitidine treatment straight away.

The consultant was also very clear about the problems infections could cause and told us that, if Tony felt unwell at any time, he should not wait but to go straight to A&E. They issued us with a rapid response HEAT card (History Examine Action Treat) and said we should produce this if we ever came to A&E and it instructed staff what to do with patients at high risk of Neutropenic Sepsis. The NHS guidance on NICE, the Sepsis Trust and websites for cancer charities all show that high risk patients should be admitted and put on IV antibiotics within 60 mins of arriving in A&E. We were reassured that if this ever happened, treatment would be in place very quickly.

Tony’s treatment was supported by regular blood and platelet transfusions, and all appeared to be manageable for some time. In early 2022 Tony’s white count and neutrophils started to drop considerably and his Azacitidine dosage and frequency was reduced. In spring 2022 his red cells and platelets were doing really well, and transfusions not needed. The consultants were comfortable that MDS was in remission (and actually used that word!) so they put his treatment on hold, but they were concerned and puzzled by his very low white count and neutrophils. Tony remained reasonably well and hadn’t had any infections during this time or been admitted to hospital at all. We started to think things were really OK and managed to get travel insurance and have a holiday in Florida. Throughout this time Tony continued to have weekly blood tests and he remained neutropenic.

In early Dec 2022, Tony woke up with a sore mouth and swollen face, so we went to A&E as per instructions and presented the HEAT card. He was triaged straight away but it was a really busy day in A&E and we waited 5 hours in the general waiting room before being taken through A&E and being seen by a doctor. What we weren’t told was this was actually the Urgent Treatment Centre, not A&E, and it was outsourced to a private company, and the doctor we saw was a locum GP employed by that company. By this time Tony’s face was more swollen and he was very cold, but the GP said he needed to see a dentist and he would give us a prescription for oral antibiotics. I now questioned if the GP understood Tony had MDS, was neutropenic and had a HEAT card but he insisted I take him home and book a dentist appointment. We left the hospital thinking perhaps it wasn’t a big problem but, within hours Tony became much worse and following a 4-hour wait for an ambulance was finally in A&E early the next day. The nurses there fully understood the procedure and put him on intravenous antibiotics within minutes of arriving. Unfortunately, this was too late and, following emergency surgery to extract several teeth, (in retrospect this was unnecessary, but staff felt that it could have been the cause of the infection and the quickest way of trying to clear it.) the next day Tony was transferred to intensive care with neutropenic sepsis.

I have formally raised with the hospital the way Tony was treated in A&E. They have agreed that the correct procedure wasn’t followed by the Triage Nurse or the GP and that we will never know if the long delay made his sepsis worse and the infection more difficult to control.

Following 5 days in intensive care, Tony spent a further 11 weeks in isolation being treated with multiple high dose antibiotics to try to hold the infection at bay. All the time during this his general health got worse. Finally, they did another bone marrow biopsy, and this showed that he had AML (Acute Myeloid Leukaemia). All treatment was stopped, and Tony came home early in March for end-of-life care and to spend time with his family. He passed away at home on the 19th March.

Tony and I always found the MDS site and newsletters really helpful and a clear source of information. My reason for sharing his story is to raise awareness of how neutropenic patients should be managed in A&E and to increase awareness in MDS patients that there is a standard, documented NHS process to ensure that neutropenic patients with any hint of infection should get really quick treatment. Patients and their caregivers should insist that staff follow this process. Clearly, not all A&E staff understand this or follow the protocol. I will always wish I hadn’t let them send us home that day in early December.

Pam 

More information about Neutropenic Sepsis


We are very grateful to Pam for sending us her story about her husband Tony.  Pam expressed how she wants to raise awareness of how neutropenic patients should be managed in A&E. She also wants to increase awareness in MDS patients that there is a standard NHS process to ensure that neutropenic patients, with any hint of infection, should get quick treatment and that patients and their caregivers should insist that staff follow this process.

As a charity one of our primary aims is to empower patients and carers, arming them with the knowledge and confidence to challenge decisions. Sometimes, through a lack of urgency or poor communication between clinicians things get missed.


Surekha Kodical

In the winter of 2019 I had been referred to the orthopaedic surgeon for knee replacement surgery. Having seen the consultant I was put on the waiting list and to my pleasant surprise received a letter within two months giving me a date for my surgery. At my pre assessment I was told they wouldn’t be able to go ahead with surgery as my haemoglobin was very low and that they will have to refer me to the haematologist for further investigation.

At this point I thought I may have been anaemic and that some iron tablets might bring my Hb up to normal. I felt fine and had no symptoms of any sort at all. Three months later my Hb went down further and the haematologist arranged for me to have a bone marrow biopsy.

When the result was to hand, the consultant gave me the news that I had a blood disorder called MDS with excess blasts and gave me a booklet which explained all about the disease. Imagine my shock at the diagnosis!

I had not heard about MDS nor had any member of my family. It was so rare that nobody I knew had heard of it. I come from a South Asian country and my family back in India hadn’t heard of MDS at all. I asked both my siblings to get checked. My brother immediately had a blood test and was diagnosed with Hairy Cell Leukaemia. He has since been treated and is doing well. My sister fortunately is ok.

I was told at the hospital that if I didn’t have any treatment this disease would progress to Leukaemia. I decided to get it treated but there was yet another shock when I was told that there was no cure for this disease and that I would need to have chemotherapy for the rest of my life.

To add to my troubles I caught Covid within a few days of my diagnosis by which time the Covid had become a pandemic. Both the illnesses made me very depressed. I started losing weight and had become anti-social, not wanting to talk to any friends who called and I would just let the phone ring and go to answering machine.

Looking on Google to find more information on MDS my husband came across the MDS Support Group and suggested I join. I started reading about this disorder on their website and finding out that there were many like me who had been given this diagnosis and how they coped, helped me to slowly come out of my shell and to see life in a different perspective. The help and support of the MDS Support Group together with the regional Zoom meetings have been very useful in understanding this disease.

Surekha Kodical

Stories of diagnosis

Stories of diagnosis for MDS World Awareness Day 2022

MDS World Awareness Day - October 25th 2022

Some people, when being diagnosed with MDS, are not told by their healthcare team that it is a form of cancer, nor what level of severity their MDS is.

By not mentioning the term ‘cancer’ immediately at diagnosis, and not explaining low-risk vs high-risk, there is a risk that patients find out by chance, as soon as they look up any information after their initial appointment, such as on the NHS website. The shock of that discovery, when alone, and the lack of medical staff to check with can be traumatic for many. 

Not using the term ‘cancer’ also means that these patients might not receive the support that they are entitled to, such as knowing their employment rights and access to psychological and financial support. 

What was your experience? We'd love to hear from you. Send us your story at info@mdspatientsupport.org.uk and we'll add it to the stories below.

Your Stories of Diagnosis

“My husband’s diagnosis came out of the blue.  Despite a week in hospital with critically low blood levels, being moved around different departments and subject to lots of different tests, at no point did anybody mention either MDS or cancer. To be told he had a form of blood cancer was a huge shock, especially as they said it was incurable which he took as a death sentence.  After six weeks of thinking he only had a month or two left to live, they said his MDS was lower risk and manageable, with a chance of a cure from a stem cell transplant.  Having hope again was amazing, but if that had been explained at the start it would have saved a lot of anxiety and heartache in those first few weeks”

"I stumbled across the MDS Patient Support Group while searching for answers following my MDS diagnosis. While the doctors were great and very supportive, I didn't feel I was getting the full story. The "c" word was never mentioned and I was frankly shocked that MDS is classified as a blood cancer when I found out through the MDS Patient Support website."

“I didn’t even know it was anything serious, I felt a bit tired sometimes but at 78 I put it down to old age creeping on.  MDS was diagnosed after a routine blood test for Type 2 diabetes.  I’d not heard of it before. The consultant described it as a pre-cancerous condition that might eventually lead to leukaemia, but it was manageable with injections, and they would keep an eye on me.  I felt very reassured.  After a few years the injections were increased to weekly from fortnightly but as they taught me to do them myself it wasn’t a problem.  I might not have been cured but had more energy again and was able to carry on with my life, including going abroad several times a year.”

“My husband’s diagnosis was found by chance after a routine blood test.  He is only 45, and very fit and well … wasn’t given the impression cancer was likely [prior to having a bone marrow biopsy].  Fortunately I was with him to hear the diagnosis, the consultant was very good, explained a lot and gave us time to ask questions which he answered clearly.  At this point we had no information about the risk ‘score’ and left fearing he wouldn’t see 50! We were more upset than we had ever been in our lives, and terrified”

A lady diagnosed in a Bruges hospital, after taking ill on a cruise, was very glad that the Belgian clinician acted so quickly and liaised with her local hospital in Scotland.  However the initial diagnosis had come as a shock, and it was referred to as a cancer. She is 73, diagnosed as High Risk, is currently receiving Azacitidine one week out of every four which she is tolerating well.  

“I felt that it was a bit brutal as I was on my own and it was a shock,” she says, “ I am so thankful that I was diagnosed so quickly [by the hospital in Bruges] and my treatment [at her local hospital in Scotland] started so promptly.  I have not asked for a prognosis [but] will take life as it comes, hoping that my treatment is effective for as long as possible”

Send us your stories of diagnosis

  • Were you told at diagnosis that MDS is a form of blood cancer?
  • If not, how did find out?
  • What was it like for you finding out in that way?
  • Were you told at diagnosis that there is a low risk and high risk of MDS?

Send your stories to info@mdspatientsupport.org.uk


Where angels fear to tread – by Kes Grant

A blog post by our dearest Kes Grant

In my last update I explained that I’d been an in-patient and they were treating me for pneumonia. It seems I have a fungal lung infection that then caused a bacterial infection. I was put on some strong antibiotics as well as a hefty dose of antifungals.

I got out of the hospital Sunday night which gave me a day to prepare for my friends funeral that I was taking. I felt pretty awful. I’m normally very quick in writing liturgies and personal eulogies. I’m lucky that I have this ability to sit and let it all come out in one stream. What I found was that I kept losing my concentration. The words would also start to swim in front of me on the screen. It was a strange experience. I kept at it but it took me twice as long.

The other thing I noticed was I was shaking. My hands had an obvious tremor. Also my legs were uncoordinated. If I had to step over something, I’d really wobble. On top of this when I was in the car, I’d look up and not recognise where I was despite it being a familiar road. In what is highly unusual for me, I asked my other half to drive. This went on for a few days. I felt like I was dying. I was uncoordinated and clumsy. I couldn’t concentrate and I was very shaky.

Despite all of this I was determined to take Eileen’s funeral. It was at a nice time later in the afternoon so I didn’t have to get it together too early. My lovely Maggie drove me to the crematorium and went for a wander in the grounds while I took the service.

When I write these liturgies I always print them in large font. This makes it easier to look up and connect with the people at the service and navigate your way back to where you’ve left off. This was working fine until we came to the hymn.

The family were keen to have a hymn because their mum loved music and singing and used to be on the rota to play the recorded accompaniment during our church devices. I told them all they needed to sing. The only problem was the backing track was a choral version that was set too high for congregational singing. Normally I would belt it out and try to encourage others to join in. Sadly though my lungs were not up to singing. The effort it took started making me shake from head to foot. The small print of the hymn words meant the words were swimming before my eyes and I couldn’t find my place. I had to grab the chair beside me at one point and I also gave up on attempting to sing.

It’s never happened to me before. I felt vulnerable in that moment and just decided to concentrate on my breathing. Fortunately I was able to dig deep into my soul and find the resilience and resourcefulness I needed to get through the rest of the service. I was so pleased to have pulled it off without incident or anyone noticing. I hope I did Eileen proud. May she rest in peace.

The next day I took it really easy and recharged the batteries. Then I had to go for a check up to the hospital. I explained how I was feeling and that I don’t remember ever feeling so frail and vulnerable. Normally I sleep like a log for 10-11 hours a night. I hadn’t slept for 3 nights more than a brief doze and this was also making me feel very spaced out. I told the doctor and it seems that the strong antibiotics were the culprits. Also the antifungals were causing problems so they changed both of them and I slowly started feeling normal again. It’s not until you’re really sick that you realise the huge impact that some of these life saving drugs have on the rest of your body.

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The current additional meds will need to be taken for around 3 months. Healthy adults do not get fungal lung infections. It’s something that only happens to immunocompromised people like me. Fingers crossed there’s not too much lung damage.

I’m feeling slightly sad just now at the impact all of this has had on my voice. I had to give up so much over the years. Football was a hard one to let go of. Hill walking and circuit training and bike riding all have gone by the wayside. What I’ve held onto was my singing. The last couple of years with covid put pay to communal singing for me. The hard thing for me now is that I just don’t have enough puff. I’ve been struggling to get to the end of the line of music before taking a breath for a while. If you sing with others you can hide that you a breathing in the wrong places. These days though I can’t push enough air out of my lungs with my diaphragm to make a good quality sound. Music is the language of the emotions and it’s speaks for us when we can’t put into words how we feel. It’s also good for you mentally and physically. I really miss it and don’t feel I’m ever going to get back to be able to sing in cathedrals when my old choir covers the cathedral choirs for absence.

On this rare diseases day I wanted to share with you how debilitating it is to have a rare blood cancer. Then after transplant to have rare side effects like losing my hearing and the ongoing battle with GvHD (graft versus host disease) and now lung damage due to a fungal infection. All these things are rare and people like me are beginning this journey every year. The big cancers of breast, lung, bowel and prostate take the lion share of cancer funding. The rest of us have to fight our corners to shine a light on to the issues.

Please help us share our stories of living with rare diseases so that funding is given equally and also so that people begin to recognise the early symptoms of blood cancer. In case you don’t know what they are its:

  • fatigue
  • breathlessness
  • bruising
  • night sweats
  • prone to infections

If you are experiencing any of the above, please see your doctor and ask for a blood test. This will be enough to show if there’s a problem that needs further investigation.

Thank you to everyone who has helped me with living with my rare blood cancer. My family and friends are an amazing bunch. I’ve also met many dedicated medics. I’m really proud to be part of MDS UK which does so much to demystify this appalling illness and bring comfort and support to so many. On this Rare Diseases Day 2022 I dedicate this blog to Sophie and all the staff and volunteers at MDS UK. You will never know the difference you make to so many. Keep going all of you, we need you and the world needs more people like you too.

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MDS is a rare blood cancer. We support patients and their families at the moment of need, when anxiety strikes.

Right now most patients’ MDS cannot be cured, but it can usually be controlled. We are also contributing to research to improve the treatment of the disease.


Mark Adams’ story: A day by day of his Christmas bone marrow transplant

In June 2015 I was diagnosed with MDS RCMD, it was something I had never heard of.

The only symptoms I had had up to the diagnosis was bad mouth ulcers, really big ones. This led my GP to run some blood tests which showed that my platelets and neutrophils were low.

I was referred to the Northern Cancer Care Centre at the Freeman hospital. It was there that I had the first of many bone marrow biopsies over the years. The first bone marrow biopsy confirmed that I had MDS RCMD.

My blood counts slowly dropped over the following years and my fatigue and infections increased. As my neutrophils fell below an acceptable level in 2019 I began a course of regular GCSF Injections. These gave my neutrophils a boost.

However, during August and September 2020 my white cells started to increase really quickly, a bone marrow biopsy confirmed that the MDS had transposed into acute myeloid leukaemia.

On the 5th October 2020, after becoming really unwell & losing a lot of weight, I was admitted to ward 33 of the Freeman hospital at 8am. I was fitted with a Hickman in theatre at 1pm. I had my first dose of CPX chemotherapy at 7pm that evening, it would prove to be a very tough 5 1/2 weeks.

I had intensive CPX chemotherapy doses but I didn’t lose my hair- this time. There were a few ups but mainly downs such as infections, Neutropenic sepsis, joint pain, nausea , severe mouth ulcers, rashes &, shall we say, the unmentionable ‘toilet issues’.

Due to infections I had to have x-rays, scans & ultrasounds to check where these infections were. It was also the only time I was allowed out of the ward.

My blood counts were basically obliterated by the chemotherapy so the leukaemia cells could be killed off. Blood & platelet transfusions were a regular, almost daily thing. Throw in some intravenous antibiotics & fluid drips plus regular obs. It felt like I was always attached to a machine.

Covid:"Nurses, Drs, radiographers and staff on the ward were amazing, always there for you"

Covid brought its own set of challenges. A couple of times I had a cough and was almost immediately popped into an isolation cubicle until the Covid test came back, negative luckily. With these spells in isolation & visitor restrictions & it got to be a lonely place at times.

However I always felt cared for, I was surrounded with love, affection & care from my family & friends through cards, messages and social media. The nurses, Drs, radiographers & staff on the ward were amazing, always there for you no matter what was happening.

Also the BMS lab staff were always there to process samples, bloods & the regular covid tests.

I found I could cope with the physical side of being very ill, however the mental side was much harder. It was made harder still with covid restrictions on visitors, but at least I could have one nominated person, the hardest part was speaking to my daughter and son in law via the phone, through the window, whilst they stood in the rain on the car park. That really crushed my soul and spirit. However the nurses and Drs were always there with their unending support. I love them from the bottom of my heart. I cannot thank them enough.

"My preparations to have my stem cell transplant"

I came out of hospital on November 10th 2020. On the 16th November 2020 we met with the transplant team at the Freeman to discuss my preparation to have my stem cell transplant. During my stay in October we had spoken about my transplant and possible donors, they’d got several 9 out of 10 donors but had asked if my daughter, Aimée, could be tested to see if she could be a HAPLO match. I also signed the treatment consent forms and what seemed like a contract that I would finish the treatment.

The following day I had another bone marrow biopsy to ensure the CPX chemotherapy had killed off all the leukaemia cells.

On the 19th November Aimée had a medical to see if she was able to donate.

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Day by day, before and after Mark's stem cell transplant

On the 25th November we attended the Freeman for my “work up” chat. I had lots of bloods taken approx 14 vials, then spoke to the radiologist to talk through the risks of the total body irradiation, TBI (Editor's Note: TBI is a type of radiation therapy, given to the entire body. TBI is often used with high-dose anticancer drugs to help prepare a patient for a stem cell transplant) and to sign the consent forms.

Then it was the heart unit for an X-ray of my chest, next up was a lung function test, then across to another department for an ECG. After that it was off to the radiology department to be measured up for the TBI,they tattooed a small dot on my chest ready for when I would have the TBI. It was good to have my wife with me, it helped to process all the information we were being given.

On 27th November I had a new Hickman line fitted at the Royal Victoria Infirmary, RVI in Newcastle. All went to plan, it was a worry having it fitted but I knew it would be a blessing when I was going to have my treatment.

On the 28th November - 1st December Aimée had to go to the Freeman for GCSF injections to boost her cell counts and on the 2nd of December Aimée donated her cells, what a special thing to do. Aimée was very brave to go through the donation process.

I was re- admitted to ward 33 on the 4th December, this time to an isolation cubicle, cubicle 2. That evening I was given my first dose of chemotherapy, fludarabine and cyclophosphamide.

The following day, 5th December, I had my 2nd dose of chemotherapy, however this time I had a reaction to the cyclophosphamide so they slowed down the drip rate and gave me an antihistamine.

I had my 3rd dose on the 6th December, this time just the fludarabine. The following day, 7th December I had my 4th dose of fluradarabine chemotherapy, I was now starting to feel nauseous, however I hadn’t been sick.

The next day I had my 5th dose of fluradarabine chemotherapy, I was starting to feel quite unwell.

On the following day, 9th December, I was taken down for the total body irradiation, 8am sharp. I was placed on the top of what appeared to be a bunk bed. I then had extremely cold Vaseline packs packed around me. I was irradiated on one side then they turned the bunk bed around and they did my other side.

When I got back to the ward I was completely shattered, I slept all the rest of the day and night.

10th December and it was transplant day, finally I got to receive the cells Aimée donated, well some of them anyway. Some are kept aside in case I need a top up.

The transplant went ok, it was just like having a blood transfusion. The CNS transplant nurse was with me, also a chap from the labs from the RVi who had brought over Aimee’s cells in the deep freeze pod unit.

The following two days I was completely wiped out, I was hardly able to get out of bed.

During the following weeks, I also got a small bleed behind my eye, I had to go to the eye department at the Freeman. The bleed was due to my platelets being so low, at one point they were just 12. I needed quite a few platelet transfusions to ensure my platelets were kept at 50.

I also lost my hair due to the chemotherapy, for some strange reason it didn’t bother me. I got further infections but the staff were onto them very quickly with intravenous antibiotics. The staff were absolutely wonderful, always there for me, their professionalism was first class. I don’t know where I would have been without them.

On the 13th & 14th December I had a further two doses of cyclophosphamide chemotherapy. During this period I managed to get an E. coli infection and my temperature spiked to 38.5. I felt terrible.

On the 15th I started on the anti rejection drugs, Tacrolimus.

On Christmas Eve morning I dressed up as Santa, stepped out of my cubicle and just said ho, ho, ho, it really brought a smile to all the nurses at the nurses station. It was shift change over, so they were all there. I felt awful really unwell but I was determined to do it. Just for them.

I was in isolation for approx 5 weeks, I spent both Christmas and New Year in cubicle 2. I came out of hospital On the 6th January 2021, it was such a relief to come out but there was still a long journey ahead. That’s for another time.

I’d kept a journal of my time in hospital and my continuing journey afterwards, it often saved my sanity to be able to download all my feelings onto paper. I could cope with the physical side of being ill, however the mental health side is just as difficult to get through, perhaps even harder.


Our story by Debbie Hickman: “Neil met some incredible people on his journey, and developed new levels of patience, resilience and humility”

Today marks 65 days since my husband Neil lost his battle with this challenging disease, a disease where every single case is different, making it very hard to fully diagnose and treat. It took us weeks to get our heads around it (never mind learn how to pronounce its full moniker, Myelodysplastic Syndrome, correctly — Neil spent the first couple of weeks referring to it as ‘Melody’s Plastic’).

Debbie's mum, Joan, & Neil

After months of debilitating fatigue and being unable to shake off a nasty covid-like virus (contracted in October 2019, months before covid was reported to have hit the UK), Neil was diagnosed in February 2020, a few weeks before lockdown one.

The diagnosis came as a body-blow to him, to both of us — after a short spell in hospital and a course of antibiotics he’d been feeling well again, and had thought the clinical haematology appointment was a post-discharge formality.

The worst thing he expected was a flea in his ear about leaving it so long before seeing the GP about his fatigue, persistent cough, putty-coloured pallor and unexplained weight loss. To be told he had a rare form of blood cancer came from nowhere, and hit us like a bag of wet cement.

So began a year of fortnightly blood tests, blood transfusions and further bouts of overwhelming fatigue. Neil’s consultant referred him to UCLH for a possible stem cell transplant immediately after diagnosis, but partly due to covid, the referral wasn’t picked up until the October. By then Neil had undergone two courses of azacytidine, which he’d tolerated well. Two 100%-match donors were identified just before Christmas last year, and his transplant was scheduled for early in the New Year. Then the first donor dropped out, possibly got cold feet about attending a hospital in the midst of a pandemic. The second donor stepped up, and the transplant was rescheduled for early March. Then UCLH checked his ferritin levels — after a year of iron-rich blood transfusions these were found to be stratospheric, so the SCT was put on the back burner in order for these levels to be brought under control. Sadly, this wasn’t a treatment routinely offered by our local NHS Trust due to funding issues. (If you’re having regular transfusions your iron levels should be monitored — Neil’s weren’t. If yours aren’t, talk to MDS UK).

In late February Neil went up to London for a ferriscan, a type of MRI designed to identify the amount of iron being stored in the major organs. After the scan — which left him feeling a bit sick and as if he’d been ‘pummelled’, he went to the main hospital for a blood test and platelet transfusion, but began to feel ill on the way home. A few days later he was admitted to our local hospital with suspected neutropenic sepsis. He came home after a fortnight, the transplant was rescheduled for April, and the iron chelation started in earnest. However, his MDS began to progress and his counts plummeted. He began to receive blood and platelet transfusions more frequently, meaning regular trips to and from London, often by public transport (during a pandemic!). He kept getting infections, spending up to five weeks at a time in hospital, fifty miles away from home, when, thanks to covid he could only have short visits from me once or twice a week. These hospital stays often left him depressed, due to lack of outside contact, sleep deprivation and the hospital food (which was, frankly, nothing short of disgraceful — paltry, cold, dry, of little nutritional value and often inedible).

To cut a very long story short, Neil’s transplant was postponed four times. He died five days before what should have been ‘day zero’. The gods had more in store for us — a few hours after Neil passed, in intensive care in UCLH, my mother died too — 82 years old, she’d been suffering from a bad chest infection and the news about Neil proved too much. She was over 300 miles away in the North-East. Weirdly, she, too, had been diagnosed a few years ago with low risk MDS, which was managed successfully with EPO injections that she administered herself every two weeks. It wasn’t a factor in her passing, but a cruel twist of fate that the same rare blood cancer affected two members of our small family. Maybe it’s not as rare as we think — all the more reason to raise awareness and campaign for further research.

Neil’s case has turned out to be complex, and there is to be a full inquest into the sequence of events before his passing, to take place in February 2022. However, before contracting what turned out to be a final, fatal bout of neutropenic sepsis, Neil began to respond really well to venetoclax and aza — his counts improved dramatically and he had more energy than he’d had for months.

Just a couple of weeks before he passed he actually began to feel like himself again — it is thought his sudden downturn may have been due to something else that hadn’t been picked up. There truly is hope to be had in the new therapies coming along the pipeline. If your local NHS Trust doesn’t appear proactive or cooperative when it comes to new drugs, treatments or clinical trials (ours wasn’t, at least not for MDS) get yourself referred to a centre of excellence or research hospital, and ask about shared care. MDS UK are there to support you, should you meet any resistance.

We asked for donations to MDS UK at Neil’s and my mum, Joan’s, funerals, which raised over £900 for this amazing charity. I cannot overstate how much a difference it made to us to have the support and friendship of the MDS UK community during Neil’s journey, I will be eternally grateful for it, and as a family we will continue to support their work. It may be too late for Neil, but we hope that the detailed examination of his case may throw some unforeseen light onto lesser-known elements of the disease, and how it progresses, or impacts other underlying or undiagnosed health conditions.

May we send our love and strength to every one of you touched by this disease, whether you’re the patient or a carer or a loved one of someone going through it. I resisted posting in the MDS groups about Neil’s passing, as I know how soul-destroying such stories can be to read. But every single case is different, and one person’s story isn’t going to be the same as another’s.

Neil thought he only had weeks left when he was diagnosed, but it was nearly two years from when he first became noticeably ill to when we lost him, and we had many good times in those two years. He met some incredible people on his journey, and developed new levels of patience, resilience and humility along the way. If he’d managed to stay infection-free for just a couple more weeks he would have had his transplant — the donor cells were there, ready, on ice — and he could have been living a normal life again by Christmas. The new drugs he’d started were working, they just took longer to kick in for Neil than he’d needed.

Don’t ever lose hope!


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