Claire Shepherd

28-year-old Claire Shepherd began experiencing symptoms in February of 2019. However, her symptoms were constantly misdiagnosed, and it wasn’t until April that she received her diagnosis of acute myeloid leukaemia (AML) following multiple trips to the GP and dentist, and calls to NHS 111. Here, Claire shares her Spot Leukaemia story.

Looking back, I first started feeling ill while on a work trip in February 2019 and was diagnosed in April 2019. I work as an application specialist in drug discovery research and travel around training other scientists. I was staying in a hotel and struggled to get out of bed in the mornings, nearly being late for my meetings, and found it difficult to focus. I also had some mouth sores and a stiff neck; on a train on the way home, I couldn’t even focus on replying to emails. I put it down to having had a few winter bugs, working a bit too hard and hotel pillows.

That same day, my boyfriend was taken ill, and the doctor treating him at the hospital commented that ‘I didn’t look well at all’, but I just fobbed it off saying I’d had a long week travelling for work. A few days later I visited the GP for a bad case of oral thrush, which I also put down to being run down and the stress of my other half being ill. I cancelled a work trip so I could work from home and rest, but still felt really run down and like I was fighting off an infection.

In March I visited the GP as I’d now had this flu-like infection for weeks and it wasn’t getting any better. I also had fatigue and joint pain, but since I have joint hypermobility syndrome, I didn’t mention these as it tends to ‘flare-up’ when I’m stressed, run down or have an infection. I was told that as the symptoms had lasted so long it was more likely to be an allergy like hay fever. I knew it wasn’t hay fever and pushed, eventually leaving with a course of antibiotics.

Then I started with pain and swelling in my wisdom teeth. I followed the usual advice to gargle with salt-water etc., but they just got worse. Having recently moved to a new house, I hadn’t registered with a dentist yet. One night I developed a fever and, not wanting to waste NHS resources, called NHS 111, who said I probably had a gum infection and did an emergency referral to a local dentist. They cleaned the gum area and started me on a second antibiotic to treat the ‘gum infection’, which has side effects of nausea/vomiting and diarrhoea.

However, the swelling didn’t improve, and I still had bad flu symptoms. I lost my appetite and couldn’t keep much food down, but just blamed this on the antibiotics. I continued to ‘power through’, driving to York and back for work, thinking that I wouldn’t let a minor gum infection slow me down and blaming myself for feeling tired. We almost did an experiment with bacterial spores that was ‘only a risk if you are immunocompromised’; fortunately, we didn’t do these experiments! The lab was really hot and I felt faint at one point, but still drove home, putting it down to not eating and drinking much. By the end of the week, I was wiped out and re-visited the dentist as I now had swelling on both sides of my mouth. My glands were up and I ‘looked like a chipmunk’. I couldn’t drive myself to the appointment, which also should have been a red flag. The dentist couldn’t find any infection to clean out and when I asked what was causing the gum inflammation, they just blamed poor oral hygiene. I was given another course of antibiotics. Still feeling awful, I cancelled my travel but continued to work a bit at home, mostly from the sofa. My appetite was so bad that I was relying on Complan milkshakes, struggling to even keep those down. Again, I thought, once I finish the antibiotics things will improve. I also felt it wasn’t worth seeing the doctor until I’d given them a chance to work.

My boyfriend noticed my breathing had changed at night, and by this point I was looking seriously ill, so I booked an appointment to go to the GP on the Friday. By now I knew something was wrong; I felt dehydrated and could tell I had a very serious infection, I could barely stand. I knew I would end up in hospital that day on IV fluids and antibiotics, but still the worst case I was expecting was a particularly bad infection. I couldn’t even drive the short distance to the GP, but still I was expecting that with the right fluids and antibiotics I’d be better by the next week.

I explained the symptoms, that I was drained of all energy, a mouth infection that wasn’t clearing up despite all the antibiotics, fevers, loss of appetite, barely keeping water down—I just burst into tears because I felt so ill. It was at this point that my GP looked at me, examined my swollen glands and checked my temperature, which was sky high. He looked concerned and said, “Something is wrong here.” I just felt relief that I was finally being listened to, but still the discussions were around a bad infection. He referred me for an urgent blood test, said to call on the Monday for the results, keep an eye on my temperature and prescribed some different antibiotics to take over the weekend. I went straight to the hospital for the blood test, struggling to walk from the car. We got the prescription and bought a thermometer to check my temperature.

A couple of hours later I received ‘the phone call’, the one I’ve repeated over in my head 1000 times: “We’ve just received your blood test, I’m very sorry to tell you that you have acute myeloid leukaemia.” It was a total bolt out of the blue, and awful to receive the news over the phone. I could also hear the shock in my GP’s voice. He told me to go straight to A&E, that they were expecting me, and to pack a bag as I’d be staying overnight. I just sat there numb; I work in cancer research, so I knew the severity of what I was being told, thinking that I was going to die. I couldn’t bring myself to call my parents—I asked my boyfriend to break the news—then we all headed to the hospital together.

Arriving at A&E all I could say was, “I’ve been told I have leukaemia and you’re expecting me.” I explained everything to the triage nurse, who said something like, “I think it’s very unlikely you’ve got leukaemia, your white cell count is probably just raised because of an infection, I think your GP has made a mistake. You’re too young to have leukaemia.” I now know that my haemoglobin (Hb) was about 60% of what it should be, I had no platelets and my white blood cell (WBC) count was over 100. I wish she’d checked this information before giving me false hope. I thought, phew, it’s all just been one big mistake, I’ll get some IV antibiotics and be on my way home. When the haematologist came down to say they’d need to do a bone marrow biopsy to confirm it, but she was positive I had acute myeloid leukaemia (AML), I had to ask several times if it wasn’t just a mistake.

They started me on hydroxycarbamide there and then to bring the white cells down. It was explained that I’d be moving straight onto the haematology ward to an isolated room for at least five weeks. I was told to expect to be off work a minimum of six months. The pace at which everything moved was so rapid. I wasn’t allowed to return home to collect any belongings; I would start my treatment there and then. It took a while to be transferred to the ward, as I was scoring very high on a critical care scale. A&E on a Friday night is the last place you want to process such news. I was still thinking about my work trip, and ironically, I was also due to speak at a Cancer Research UK conference a few weeks later. To go from being working at home with ‘flu and a gum infection’, to sitting in hospital receiving chemotherapy in just a few hours, just felt so surreal. I had to text my colleagues to explain I wouldn’t be in work next week, and who knows if I was ever coming back.

Once I was moved to the ward, somehow all the ‘cheery’ decoration made me feel very upset and overwhelmed. This was very much a cancer ward, somewhere I had never envisaged being. I was supposed to be the one finding treatments for cancer, not the one receiving those treatments, but cancer does not discriminate. I also knew I had none of the risk factors for AML—male, over 65, smoker—it felt very unfair and I felt I must be the only young patient on the ward. In fact, there was another young person about my age receiving her stem cell transplant on the ward at the same time, but due to the isolating nature of the treatment, we didn’t meet until some months later.

Looking back at how ill I felt, I had all the classic symptoms of leukaemia, but my symptoms were so vague and came on so gradually, leukaemia didn’t cross my mind. However, I think recent life events that were causing me anxiety, my joint hypermobility syndrome diagnosis and my age meant it wasn’t until the AML was quite advanced that anyone (including me) realised something was seriously wrong. I also feel that dentists should be trained to spot the symptoms, as swollen gums are a major symptom, and they should flag anyone who also has a fever or swollen glands for a blood test or back to the GP. I called NHS 111 quite a few times and I was always referred to a dentist rather than a doctor. I think if I’d visited A&E or the GP during those weeks, a blood test would have been done and it would have been caught sooner. I’m so thankful that my GP did the urgent blood test, as I’m sure I wouldn’t have survived the weekend without it.

Following my diagnosis, I designed to join a clinical trial. Of course the scientist in me found this very exciting and my family would regularly lose track of the conversations with my haematologist. The trial drug to be given alongside my chemotherapy was an antibody drug conjugate, essentially a ‘vessel’ that targets the leukaemia cells and only releases the ‘payload’ chemotherapeutic once it’s bound to the cancer cell. Unfortunately, this drug wasn’t available in the end, but I continued with two rounds of induction chemotherapy (FLAG-IDA), each being one week of treatment, followed by four to five weeks of isolation in hospital, blood and platelet transfusions and injections of G-CSF. The first round was the hardest. I had so many infections to start with, and I’d already spent three weeks with vomiting and lack of appetite. I had a Hickman line fitted, which got infected, meaning I was transferred to intensive care with 24-hour one-to-one nursing and treated for sepsis. Those five days are mostly a blur to me, but I know I was really very ill. I do remember a lovely nurse who spent time with me showing me how to tie headscarves, preparing for the impending hair loss.

Then when I was able to leave ICU, I was placed in an isolation ‘pod’ which was essentially a Perspex tube, like you see in Japanese hotels, with a blacked-out window, with no daylight. I found this incredibly claustrophobic and my mood just plummeted. Luckily, my psychologist was able to get me transferred to a different room with a window; it wasn’t the best view, but at least I knew if it was day or night.

This isolation was the hardest part for me. Many of the support options out there for people with cancer are not available to those of us with AML. I would read about how people had a chance to preserve their fertility, get eyebrows tattooed on and organise wigs before starting chemo. This is not an option for AML, as time is of the essence to start chemotherapy. That being said, I managed to organise an awful lot from my hospital bed. Loads of head scarves would arrive on an almost daily basis and one of my best friends brought me a massive collection of pyjamas and loungewear. It’s funny how one of my first thoughts was that I didn’t have enough nice PJs for a long hospital stay! Colleagues and friends would send gifts and cards, which were always gratefully received. The ward was also fantastic, with an amazing lady called Joy who’d appear twice a week for reflexology, a welcome break from all the poking and prodding that would generally take place every time someone knocked on the door. There was also the ‘wig lady’ who arrived with a suitcase of wigs, a mirror and made me feel as if I was at the hairdressers picking out a new style, rather than just an NHS provided wig to cover my now shaved head. Fun story: the ward clippers broke on the day I decided to ‘brave the shave’ so the ward staff had to make trips to three different stores to find some! By the time it happened, I was just too tired to care.

In between rounds, I could go home for about two weeks, and I certainly made the most of that time seeing friends, eating out and even going to the beach. Even though I felt extremely ill, these brief respites gave me something to look forward to and kept me going. I think I was very lucky that I didn’t really suffer with insensitive comments during my treatment. Every member of staff in the haematology department has been so supportive and encouraging throughout my treatment. The thing I found hard was explaining to people why they couldn’t visit me, due to the risk of infection. I lost a few acquaintances, as I think they thought I was ‘being over the top’ and took offence. I also think cancer can be an ‘invisible illness’; when I was out and about with my wig on, make-up and PICC line covered I looked ‘normal’. Friends would be surprised that ‘I didn’t look sick’, and I’d get compliments on my hair from strangers who were shocked when I told them it was a wig and why. Even now, people comment that it’s ‘good to see me looking so well’. It’s nice to hear, but many of my symptoms are invisible, so I might not actually be feeling so well that day. So, I would urge people to consider that not all illnesses are visible, and you never know what a person is dealing with beneath the surface.

Fortunately, I went into full morphological remission after the first round of FLAG-IDA. I was positive for two molecular markers, NPM1 and FLT3-ITD. The NPM1 marker can be tracked and used for measurable residual disease (MRD) testing. After the second round of chemo, the marker was gone from my peripheral blood, which meant I didn’t need a stem cell transplant. I continued with consolidation chemotherapy (two rounds of high dose cytarabine) and was allowed home while neutropenic, which was much better than being in hospital. Even though it meant very long days in outpatients for transfusions, and regularly having to rush in each time I spiked a temperature. In some ways the treatment was much busier than a full-time job.

I had my final bone marrow biopsy in November 2019 and received the amazing news that the NPM1 marker was gone from my bone marrow on Christmas Eve. I’m currently in remission, being monitored via monthly blood tests. I was delighted to finish treatment and receive the good news that my marker is gone. I would say that I remained very positive during my treatment, and I’m the kind of person who just gets on with things and makes the most of a bad situation. However, I think I was naïve in my expectations of returning to ‘normal’ once treatment ended. My treatment was so intense and happened so suddenly that I didn’t have time to mentally process everything, and it hit me like a tonne of bricks once the hospital visits were less frequent and I had more time alone with my thoughts; I had some really low points and bouts of anxiety. I’m also living with the anxiety of relapse, which will probably never go away, but is improving over time. It’s different to other anxiety, because the risk of relapse is very real with AML and, in some ways, I wish I understood less about the molecular mechanisms of my cancer. I’m learning how to manage it through mindfulness, Pilates and sometimes just giving myself time to rest in bed watching Netflix. I’ve also developed a love of food after losing my sense of taste and appetite during chemo, alongside the truly awful hospital food.

The end of my treatment coincided with cold and flu season, and due to my immune system being weak, I came down with every bug going and they hit me hard. Other side effects like fatigue and chemo brain are also taking a while to shift. Chemo brain was hard for me to deal with, because I’ve always been a mentally sharp person, but during my chemo I could barely follow a Netflix drama or read a trashy novel. I didn’t know what was happening to my brain and worried there would be some permanence to it. However, nine months into my recovery, I’m pleased to say that’s improved greatly.

The current coronavirus pandemic has put my recovery and travel plans on hold, yet again, which is very frustrating after so much isolation last year. Just before my diagnosis, we were about to buy a house, go on holiday and I was working towards promotion. It feels like a big step back. However, I’m making progress, albeit at a slower pace than I’d like. Before the COVID-19 crisis hit, I’d built up to walking 10km again, returned to swimming and attended a few concerts with family and friends. A nasty adenovirus infection set my recovery back and left me with chronic chest pain, but that’s now easing and I’m now building up to exercising again. I’ve been able to return to work on a phased return from home, helping scientists with several COVID-related projects, so this is keeping me busy and I’m very hopeful we will have a vaccine or a treatment soon. It feels good to be able to play a small part in this massive global project; I’ve never witnessed scientific collaboration on such a massive scale. COVID-19 aside, I also work closely on many cancer-related projects such as immunotherapy, CAR-T cell therapy, gene therapy etc. My experience has renewed my passion and drive to accelerate these therapies to the patients who really need them. I hope that in this way I can give something back, to the fantastic medical staff in the NHS who looked after me last year. I hope that 2021 will be a better year and I’ll be able to attend the concerts that have been postponed this year, as well as a few well-deserved holidays for belated 30th birthday celebrations.

I always thought of leukaemia affecting mainly children, or older people over 65. Therefore, when I was diagnosed, I felt I was so unlucky to get this at a young age. The first time I was aware I wasn’t the only young adult with AML was reading a copy of Leukaemia Matters at one of my outpatient appointments. I read about a young girl with symptoms almost identical to mine, who was now in remission. This helped me realise I was not alone, which is why I’d like to share my story now, to support others in a similar situation.

Spot Leukaemia is an important campaign to highlight the fact that anyone can get leukaemia at any age. The symptoms are so vague that it’s often missed, when a very quick, cheap blood test can lead to earlier diagnosis. Last year, I shared Spot Leukaemia information on my Facebook page, which meant that when my friend Mattia suddenly got a lot of unexplained bruising and fatigue, he went straight to his GP and got a diagnosis of acute promyelocytic leukaemia (APL). This is proof that the social media campaigns can have a massive impact in terms of encouraging people to seek medical help earlier. I wish I’d been more aware of the symptoms. I think there needs to be more awareness of the common symptoms among the general public, GPs and dentists as earlier diagnosis can make all the difference treatment-wise.


Living with Leukaemia

Living with Leukaemia is our annual patient survey that aims to reveal the experience of leukaemia patients from diagnosis through to treatment and living with or beyond blood cancer.

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