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Gillian's story

Gillian's story


February 1, 2022

“I’m not going to mince my words, you have leukemia” – wasn’t what I was expecting to hear when I got my test results back. I was diagnosed with leukemia in June 2018, after about a year of feeling up and down. I was a fit and healthy PE teacher who was used to being on the go 24/7; however, I had been getting frequent ear, throat, and chest infections and after a few months, I just felt like I couldn’t get enough sleep, I was constantly feeling wiped out and drained. On reflection, I probably had a few more aches and pains than normal but with an active job, I always put it down to something else.

After continually getting blood work done, I was referred to an oncologist to see what was going on as my blood levels were a bit off. They thought I had neutropenia but in the process of testing, I took sepsis in my knee. Spending weeks in hospital, my bloods weren’t picking up and it was suggested we do a bone marrow biopsy to see where the neutropenia was happening, either inside/outside my white blood cells. Never did I expect to be told I had leukemia.

After diagnosis, I was quickly meeting with specialists who told me that I had acute myeloid leukemia, and they explained what it was.

In a space of a few weeks, I had gone from worrying about lesson plans and marking, to starting to focus on my key numbers, like neutrophil and platelet levels. I was surrounded by strangers who became friends in my hospital ward, and staff who were amazing. From the start, it was clear I was going to need a transplant so the search for a match was on.

My treatment included two cycles of chemotherapy that comprised of two programs each time whilst being part of a treatment trial, and the times in between eating goji berries and dark chocolate to get the neutrophil numbers up—it was a ‘ward fact’ that they helped. Each process was explained to me and I was lucky that two possible 100% matches were found using the worldwide registers, which meant I didn’t need the third cycle. I was allowed a few precious days at home in between finishing my second cycle and starting the preparation for my transplant, which involved 3 days of intense chemotherapy and then 4 days of double whole body radiotherapy sessions. This was the most mentally taxing bit of all my treatment; by the last one, I felt like even blinking took a monumental effort. However, the day after this, I received my transplant from someone who was a stranger, but I am now in contact with. Then, 25 days later, I was allowed to go home to start my recovery and my 100-day isolation. During this time, the effects of the medications kicked in and I could barely go anywhere without ‘Barry the basin’ by my side (sorry to any Barrys reading this), but as time went on, I could walk one lamppost further than I did the last time.

Now, 3 years on, I am still getting used to living a new normal life and making the adjustments I have had to, but each day gets better. I still have days where doing the simplest of things takes a great effort, but it is a small price to pay for the time I am getting to spend with family and friends, which I was unsure if I would have. I have made lifelong friends with people I would never have met if I hadn’t got ill, and I am living by the mantra I used throughout treatment—that being positive was the only option for me.

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