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.

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