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Back in 1994, shortly after my 40th birthday, I started to feel unwell. It was a really hot summer, I had two children aged eight and ten, I was working part time in a doctor’s surgery and my husband was working away. I put my total exhaustion down to the heat and being so busy. My neck glands were aching, and I began to wonder if I had a recurrence of glandular fever. I also had very heavy periods, and I had been having problems with my gut too, so my GP performed a sigmoidoscopy and did a blood test. Within an hour, my arm was completely blue and black with an enormous bruise at the site of the needle.
Later that afternoon, while I was busy packing for a farmhouse holiday, my GP knocked on the door and asked if my husband was with me as my blood test had come back showing acute myeloid leukaemia (AML). As I had had an invasive sigmoidoscopy, I was at risk of sepsis, so needed to be admitted that night.
I never thought my symptoms were serious, and my GP never dreamt of it being leukaemia either. I don’t think it is even on a GP’s radar as they see it so seldom.
The staff and patients on the haematology ward were amazing, and the consultant explained that if I had gone on holiday I would have died as it was so advanced. With treatment, I was given a ten percent chance of living for a year. It was such a huge thing to get my head around and a year seemed a good deal compared to dying the next week.
I had five months as an inpatient and took part in a clinical trial. During this time, my parents moved in to look after the children and my husband lived in their house and came home at weekends to look after the girls. I was home in time for Christmas and decided to give up work to spend what little time I had with my family.
I felt so fortunate to have been put on a clinical trial as I was the only survivor out of the cohort I went through treatment with. This meant that, ten years later, I was told I could consider myself free of leukaemia and put it all behind me.
However, shortly before my 50th birthday, I lost my voice and assumed it was just a bug. I still had it three months later and was finding it increasingly hard to breathe. I was due to see an ENT consultant on another matter and he was shocked to find a massive tumour blocking my airway. I had emergency surgery the next day, but my airway collapsed while I was on the operating table, so they performed an emergency tracheotomy. Biopsies failed to identify what kind of tumour it was, and subsequent biopsies were equally baffling. After six weeks as an inpatient, my haematology consultant came to see me to tell me that it was a leukaemic sarcoma, something nobody had ever seen before.
I started chemotherapy once the Hickman line was in. Thankfully, the tumour melted away within a week and I could speak again. They decided a stem cell transplant was the best option to knock it on the head, so it was another five months as an inpatient before I came home very weak and wobbly. I managed to go back to work after six months. Our girls by this time were doing A-levels and at university, and I was glad of the return to normality that work at the surgery brought.
I think I have been incredibly lucky to still be here 24 years later. There are side effects from the total body irradiation. My spleen no longer works, so I catch a lot of bugs, and my bones were weakened by the irradiation too. I now have osteoporosis and have had six or seven spinal vertebral fractures, the latest a week after I was told I had breast cancer. I was warned to expect tumours the further away from the transplant I got, so it was no big surprise and it was caught early and dealt with.
I consider the side effects a small price to pay for the joy of living long enough to see our daughters married, to meet our first grandchild and to celebrate our 45th wedding anniversary.
So, I would say to anyone given a very bleak prognosis, please do not despair. Statistics are not always right, and those magnificent scientists are working so hard and are getting closer and closer to giving everyone with blood cancer a rosier future.
My love and best wishes to all of you embarking on treatment. It will be a roller coaster ride, but don’t give up.