“I am fortunate to be five years in remission and can plan for the future again” – Claire’s blood cancer story
In April 2019, Claire Shepherd, now 34, began feeling unwell and constantly fatigued. Having initially put her symptoms down to her hectic lifestyle, she was shocked to be diagnosed with acute myeloid leukaemia (AML). Now, six years on and following successful treatment, she is in remission and making the most of every day…
The thing about AML is the symptoms sneak up on you slowly. In the early stages they’re easily explained away by lifestyle factors or other minor illnesses, particularly in younger adults who tend to be very much on the go and burning the candle at both ends.
A regular gift from you will help us to discover the next generation of smart, targeted treatments, so we can help more people survive blood cancer.
In hindsight, there were signs several months before my diagnosis, largely fatigue and a cold that would not shift. The GP was quite dismissive, so I just carried on pushing through. I was 28, had recently completed a PhD in drug discovery and had moved into my first professional role in a life science company. It was a hectic job that involved regular travel. Now, when I look back at photos from that time, I can see I looked very pale and unwell.
About a month before my diagnosis, I was struggling with a bad case of oral thrush and bleeding, swollen gums. I developed a fever and looked very pale, so was sent to an emergency dentist who diagnosed a gum infection and gave me antibiotics. I continued to travel for work, despite struggling to eat or keep food down, putting this down to a side effect of the antibiotics. The infection didn’t clear, and I had round after round of antibiotics, with the symptoms only getting worse. I only realised something was wrong on the day of my diagnosis when my partner told me my breathing hadn’t been right during the night. By this point I was struggling to keep fluids down and felt very lightheaded when standing. I was expecting to be diagnosed with a bad infection and I assumed some fluids and IV antibiotics would sort me out.
That day, I got an emergency GP appointment (the fifth one that year) and broke down in tears. I was still trying to work from home but couldn’t concentrate on anything. The GP checked my temperature, which was sky high, and I left the appointment with a new prescription for more antibiotics, a referral for an emergency blood test and instructions to buy a thermometer to monitor my temperature over the weekend. I was told to call for the results on Monday. I finally felt that I was being taken more seriously.
‘The idea that I had cancer never crossed my mind’
Just two hours later, I received a call from the GP telling me I had AML. That moment played over and over in my mind for years. The idea that I had something as serious as cancer, and such an aggressive cancer, had never crossed my mind. Yet here I was, being told to pack an overnight bag and head to A&E immediately.
My partner called my parents and we all travelled to hospital together. Within a couple of hours, the haematologist came to see me and confirmed my diagnosis. The cancer was advanced. My blood was full of leukaemic cells, I had no platelets and an incredibly low red blood cell count. I also had sepsis as my body wasn’t fighting the infections I’d acquired. I started oral chemotherapy there and then to start bringing the cancer cell count down.
I was told I would be admitted to an isolation room in the haematology ward for six weeks, with few visitors, due to the intensive chemotherapy that would destroy my immune system. My diagnosis was formally confirmed a few days later following a bone marrow biopsy, but by now, this was more of a formality.
I was in shock, but quite honestly, I felt too ill to process everything. I was just relieved to be in a bed resting, and the fluids and antibiotics started to make me feel a bit better.
I am a biochemist by training, so I already understood what AML was, and what my treatment options and prognosis were. I very quickly surprised my doctors with specific questions about my treatment plan and bonded over colleagues we both knew.
Initially my family and friends were in shock. I recall my dad asking my doctor if it could be him instead. It was a very surreal time for all involved. I was fortunate to have incredible family, friends and colleagues who supported me the whole way through, visiting when they were allowed, sending cards and gifts, and some travelling significant distances to spend time with me when I was out of hospital.
‘I made plans for things I’d do once treatment was over’
My treatment involved four rounds of intensive chemotherapy. The first two rounds used a drug called FLAG-IDA to get me into remission. These required four to six-week hospital stays, with two weeks at home to recover in between. The first week was chemo each day, and the next four weeks would involve a lot of blood and platelet transfusions and antibiotics while we waited for my bone marrow to start producing its own blood cells again. The second two rounds were high dose cytarabine, which for me involved shorter hospital stays. I was allowed home to recover, with clinic visits for the transfusion every two weeks. In total, the treatment period lasted around seven months plus another three months of recovery until my bloods returned to normal.
One of the most difficult parts of my treatment was the isolation (on top of the usual side effects of sickness, hair loss and fatigue). I coped by making sure I had at least one visitor a day and making the hospital room my own with bedding from home and plush toys. And to be honest, a lot of online shopping! I maximised my time out of hospital by seeing friends and made plans for things I’d do once treatment was over.
The treatment was so exhausting that it didn’t hit me mentally until after it had finished, particularly as I was thrown almost immediately into shielding due to the Covid-19 pandemic. I had mild PTSD as a result of the whole experience and eventually addressed this with EMDR therapy, three years into my recovery.
I have now been in full remission for five years. I still have check-ups twice a year, under the ‘late effects’ clinic. I still suffer side effects from the treatment, mainly a weak immune system and fatigue. I have been diagnosed with “myalgic encephalomyelitis (ME/CFS) precipitated by AML”. But sadly, many of my ongoing symptoms have often been misunderstood by doctors. For a long time, I tried to rehabilitate using graded exercise therapy but found my symptoms getting worse. Since making lifestyle modifications, following advice to pace myself, I have found my symptoms more manageable. Unfortunately, I was also diagnosed with long-covid and postural orthostatic tachycardia syndrome (POTS) a couple of years after my treatment finished, which limits my mobility. As a result, I use a wheelchair for longer distances. Of course, I will never know if these conditions would have developed anyway, but my immune system was weakened by the treatment, and I believe this could have contributed.
‘I appreciate all the moments of joy in my life’
Despite all these challenges, I feel bright about the future. I am incredibly fortunate to make it to five years in remission and the fear of relapse is now much reduced. I’m able to plan for the future again and even though my future looks a little different to what I had planned, I appreciate all the moments of joy in my life. I have a loving partner, amazing friends and family, and enjoy my career, developing products that support scientists in their drug development.
My cancer experience has undoubtedly changed me to the point that I almost don’t recognise the person I was before my diagnosis. I used to be someone who was always rushing around, constantly stressed, burning the candle at both ends and feeling that I should be doing more. Being forced to stop and slow down has made me appreciate the little things in life and my ongoing fatigue has forced me to accept a slower pace of life.
I made friends for life during my treatment, though sadly some of them are no longer with us. I now view death differently: in your twenties, you feel immortal, but that feeling is very much taken away by a cancer diagnosis. On the other hand, I have a strong desire to live a meaningful life and make the most of each day, which can be hard to balance when living with an energy-limiting condition. But getting my electric wheelchair last year has given me so much freedom to enjoy days out and travel again!
‘More research is very much needed’
Prior to my diagnosis, I was a biochemist working in cancer drug discovery, so I have always had a passion for cancer research and this has only been strengthened by my own experience and those of others I’ve connected with since my diagnosis. Advances in our understanding of the molecular subtypes of AML and relapse risk have hugely benefited me personally. First of all, it was possible to track a molecular marker, the disappearance of which meant I did not need to undergo a stem cell transplant. The availability of this test also gave me more reassurance that my cancer was fully in remission and undetectable on a molecular level. This was not possible decades ago. I also strongly believe that new treatments will be game changers for patients in future and will continue to improve survival rates.
That said, with improved survival rates come more survivors who want to live long, good quality lives after their treatment. Therefore, more research and awareness on kinder treatments and managing long-term side effects is very much needed.
Your support will help our researchers make more life-saving discoveries, giving people with blood cancer precious extra time with their loved ones.