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“My story begins in the summer months of 2021. I had reoccurring ulcers in my mouth; these weren’t any ulcers, they were painful, piercing ulcers that no medication would take the edge off. This was coupled with extreme tiredness which I put down to the end of school term fatigue, I carried on.
After several courses of antibiotics over the summer months and rest, I was ready to start the new academic term. Working as an Education Director, my job is busy – long hours, long commutes and very hands-on, so in the second week of September I was exhausted! I contacted my doctor who initially prescribed some medication for blood pressure, and we discussed work-life balance, however within a week I knew something was not right. I could not walk up the stairs, my heart was beating fast, I was out of breath and had a ringing sensation in my ears. I was booked in for a blood test that week.
When the doctor called to invite me to the surgery, I had no idea my life would suddenly change and flip upside down. I was immediately admitted to hospital that night. Arriving at A&E was terrifying, I was rushed through, isolated, and asked many questions. I was told I had suspected acute myeloid leukaemia (AML), but this didn’t really sink in, this wasn’t happening to me.
My first hospital stay at Kettering General Hospital was completely overwhelming. Fortunately, after a transfusion or two, my consultant allowed me to go home for a night to spend time with my children and pack my bags to expect a six week stay. Stepping into the world of cancer is something I never imagined I would have to do. It happens to other people; I led a healthy and physically active life.
As a positive and pragmatic person, I engaged with the team on the ward asking my consultant countless questions! Whilst I was able, I researched using reliable websites and trusted charitable organisations; going rogue on the internet fills you with terrible statistics and they play on your mind during the lonely hospital nights. I really believe being well informed is the best way to stay positive and understand why your body is feeling or doing certain things. Understanding blood results soon became something I could easily analyse.
The first round of chemotherapy was a trial called AML19. It was long and challenging, with sleepless nights, nausea, hair loss, fatigue – all the usual side effects. The relentless transfusions and medication, constantly being hooked up to something felt claustrophobic and invasive. PICC line insertion eased the pain of needles but showering and sleeping became harder. Thoughts of being a failure as a wife and a mother crept in and I felt I had let the team down. However, I made it through and finally made it home. Unfortunately, after a biopsy, my blasts had only reduced to 30% from 80% on admission, so a different treatment was needed.
Rounds two and three followed with FLAG-IDA. This time my hospital stays were five or six weeks long, with only one visitor for one hour per day and then for some of it no one was allowed due to COVID-19. I desperately missed my husband and children; face time only goes so far to appease the neglected feelings you have when you are desperate to be physically together. The infections were severe during these rounds as I was neutropenic. I contracted fungal pneumonia and other bacterial infections; I was really unwell, and days passed by without me even knowing. I had every scan known to mankind and visited every department in the hospital for investigations. Seeing other ‘normal’ people in the hospital was a real struggle for me, I remember being wheeled past a meeting room and saw people wearing suits engaged in a presentation – that was my old life, independent, productive, busy, but here I was being pushed around in a dressing gown barely coherent!
The other hardest part is the isolation. It is incredibly difficult when you are a sociable person and I felt that I was slipping away from who I really was. No hair, no control, no energy, no family or friends around me. I bravely stepped into the world of Instagram setting up a new account to separate the old me and the cancer me. I engaged with so many charities, read so many stories and met some wonderful warriors out there who were going through the same treatment about the same time, as well as others who had completed their treatment. This has been a great source of ‘real-life information’ and such wonderful support.
Full of mixed emotions, anxious and fearful of stepping into the real world, I left hospital to recover at home for a month before I headed to a new hospital for a stem cell transplant. The second round of chemotherapy had put me into remission, the third kept me there. The team on the ward, from the consultants, registrars, trainee doctors, nurses, health care assistants and cleaners were all amazing. I have many treasured memories of their care for me, their motivational speeches, kind words, stashes of mini cheddars, good old NHS genoa bars, laughter and attention to detail, every step of the way.
I was then at home for a decent length of time, which was wonderful. My husband has been such a pillar of strength and support throughout, juggling visiting me, work and the children, keeping friends and family informed for such a long period of time. It was good to down tools for a short while, we even managed a weekend break by the sea. Friends, family, and work colleagues have been and continue to be amazing. Emotionally, mentally, and physically I really needed that break to get me across the finish line.
Round four, I moved hospital to Addenbrookes for the big transplant. Fortunately, my brother was my donor. He selflessly went through a heap of appointments, checks and blood tests and finally the donation. I will forever be in debt to him for saving my life. The transplant day went without a hitch, my brother donated and by 4pm they were transfused to me! The first week was tough with side effects from the chemotherapy and hair loss again! But by day eight, I turned a corner and was discharged within two weeks of the transplant day!
I am currently recovering at home. It is very early days so I am keeping myself safe and enjoying family around me, counting the 100 days down until I have a biopsy to ensure that this has done the job, I am slowly beginning to feel like me again, trusting my body and remaining positive about the future and the life I am going to lead. This has completely changed my outlook on life, what is important, and what I am living for. I will not be defined by cancer, it will always be a part of my life now, but it will not own me.
For anyone who is going through this: keep positive, stay focused on short-term goals, try not to set your sights on when you might be discharged (it is never when you want it to be), don’t google, save your questions for the professionals, don’t be too hard on yourself, chemotherapy fog is real, but it does fade, and I know it sounds weird, but maintain a sense of humour! Remember life outside the hospital is waiting for you and will embrace you when you step out into the sunshine.”
Charlotte’s symptoms of leukaemia were:
- Fatigue
- Breathlessness
Are you currently dealing with similar symptoms to Charlotte’s? If so, contact your GP and ask for a blood test.
For more information on our Spot Leukaemia campaign, our goal and how to get involved, head over to our official Spot Leukaemia website at www.spotleukaemia.org.uk
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