“When I was diagnosed with leukaemia, I never thought I would still be here” – Karin’s story
Karin Manchester, 65, was told she had a week to live after being diagnosed with acute myeloid leukaemia (AML), a type of blood cancer, in 2004. Thanks to successful treatment and taking part in a clinical trial, she has been in remission for over 20 years.
It was the summer of 2004 and my life was fantastic. My husband, Phil, and I were about to celebrate our 25th wedding anniversary with a two-week trip to Tunisia, we had three fabulous children and I had recently moved from working as a community nurse to starting a new job as a school nurse in my home town of Hartlepool.
I had just graduated with a BSc in nursing studies and had planned to celebrate my achievement with a Friday night out with friends and colleagues. But a few days before, I started to feel as though I was coming down with something. I had a sore throat and a strange rash on my legs. I went to the GP, but he said there was nothing wrong with me – the rash was probably from where I had shaved my legs.
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On the Friday night, I hardly drank a thing, but the next day, I could not get out of bed. I knew I was not hungover, but I felt as though I was coming down with a strange type of flu. We were due to leave for Tunisia the following day – but what should have been a fantastic holiday turned into two weeks of hell.
At the airport, I couldn’t keep my eyes open. I fell asleep on the floor and my husband had to wake me to get me on to the flight. I was shivery and kept falling asleep. When we arrived in Tunisia, I went to see a doctor who prescribed antibiotics. But I just got worse and worse. The rash spread all over my body and I was covered in small bruises. I noticed blood in my urine and I was struggling to breathe. As a nurse, I self-diagnosed pneumonia and spent most of the trip in bed.
On our return, our son picked us up from the airport and drove me straight to the out-of-hours clinic. The doctor there also thought I had pneumonia and rang the hospital to get me a bed, ordering me to go there immediately. I had bloods taken as soon as I arrived, but was woken around midnight by the doctor, who told me my haemoglobin was three – it should have been 13.5. She wanted to take another blood test, believing there must be something wrong with the first one – but by that time I knew it was leukaemia.
I was transferred to the haematology unit at North Tees Hospital and was put in a beautiful room. I had never been in hospital before, except when I gave birth to my children, so I thought I must be about to die. I was given an immediate blood transfusion while waiting for further tests.
At that time, bloods had to be sent to Newcastle for testing, so it would be a while before my diagnosis could be confirmed. I also needed to have a bone marrow extraction to discover exactly what type of leukaemia I had. The doctors were almost certain I had AML and that I would need to start chemotherapy immediately. However, with my immunity at rock bottom, I had picked up E. coli while in Tunisia and it would be several weeks before treatment could start.
‘Without treatment, I would only have a week to live’
On 24 August 2004, I was diagnosed with acute promyelocytic leukaemia (APL), a subtype of acute myeloid leukaemia (AML). I was 44 years old. As a nurse, I had seen people with this disease before, though I had never seen anyone survive it. The doctor told me that without treatment, I probably only had about a week to live. It was an incredibly frightening time. I think I was very accepting of my fate – I was too numb and unwell to feel anything else. But for my family, especially my children, it was very upsetting. It was also distressing for my dad, who had lost my mum only a few years before.
Time was of the essence and while we waited for my E. coli infection to clear, I was kept alive with numerous blood transfusions, platelet transfusions and antibiotics.
Eventually, several weeks later, I was able to start my treatment: four rounds of chemo. I was in hospital for six months in total, and only allowed home for short periods of time between treatments. It was an awful time. I lost my hair, which was incredibly hard as at the time it was very long, all the way down my back. My chemo finished in January 2005 and I was then offered the chance to take an oral maintenance drug called ATRA (all-trans retinoic acid) as part of a clinical trial. I was on this for the next two years, after which I was officially discharged and monitored regularly with blood tests through my GP.
I was told that I was in remission at the end of my first round of chemo and have been lucky to have remained so ever since. I do still suffer from side effects from my treatment, including early onset arthritis, but I am glad to still be here and to have the chance to enjoy time with my four grandchildren.
A year after my diagnosis, I held a ‘Party for Life’ fundraising event for 400 people. It raised over £40,000 for the haematology unit of North Tees University Hospital. Some of the money was spent on a machine that gave instant blood test results, so they no longer had to be sent to a lab, and the rest went towards creating a garden for patients to enjoy while having their chemotherapy.
Not long afterwards, my husband who had supported me throughout, was diagnosed with prostate cancer. We sadly separated a few years later and he passed away in 2022.
‘Without cancer research, I would not be here’
There is no doubt that my attitude to life is very different these days. Previously, I had held myself back from doing things. Now, I grab opportunity with both hands, and I never put off doing anything. I remarried 14 years ago, to James, have retired from work and spend a lot of time travelling and enjoying life.
The importance of cancer research is not lost on me. I definitely would not be here without it. If it was not for the development of new treatments, we would still be in the dark ages. As a nurse, I had never seen anyone with AML live – now more and more people are being cured. Without cancer research, and new treatments and new drugs being developed, we would never move forward or understand the causes of cancer. Cancer research has played an important part in my life.
There was a time when I never thought I would reach old age, but now I feel I have a good chance of making it to 70!
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