“In October 2017, I visited A&E due to having severe pains in both elbows. I was told it was unlikely to be nerve damage as it was both elbows, but they booked me in for a telephone appointment with a physiotherapist and told me to make an appointment with my GP. The physiotherapist was great; they agreed it was unlikely to be nerve damage as it was in both elbows. She also insisted that the GP should do a blood test, which the GP reluctantly agreed to do. Whilst waiting for availability for a blood test, the GP gave me naproxen as they continued to believe it was nerve damage.
I finally had my blood tests done, and then my husband and I went out for the rest of the day. We were enjoying a beer at the Octoberfest tent when I realised I had a missed call and voice message from the GP. I rang them back, and the GP told me that my blood test showed abnormal blood cells and a bed was waiting for me at my local hospital.
I went home, packed an overnight bag, and told my family and manager where I was going. The GP did not mention leukaemia, but I knew enough to think it could have been a possibility. I spent the weekend in hospital, not being told anything but having lots of blood tests. Monday morning I met with my consultant for the first time, and he told me I needed a bone marrow biopsy. I asked him, “Other than leukaemia, what are you looking for?” and he responded saying, “Nothing, we just need to find out what type of leukaemia you have.”
So, I had a bone marrow biopsy that afternoon – I have never felt pain like it. The pain went all the way down my leg and across my lower back. I was too scared to move my leg as I was in so much pain. After laying there for hours, I needed the toilet and couldn’t put it off any longer so my husband and care team helped me up. But, as soon as I stood up, I passed out and woke up with an oxygen mask on and a team of doctors around me.
The following day we got the results back, and my acute lymphoblastic leukaemia (ALL) diagnosis was confirmed. We had to break the news to our children and my little sister; it’s amazing where you find the strength to do that from. Thankfully I have the Lord with me always. We spent the next few hours telling family members and friends. I had an aunt tell me I had the good cancer, but thankfully she was a lone voice amongst the hundreds that offered words of support and encouragement.
I was immediately put on steroids, we were also awaiting the results of a further test, which told us if I was Philadelphia chromosome positive or not – which I was. So, I was started on imatinib each morning. Friday that week I had a Hickman line put in and I met with a wonderful surgeon, a fellow Christian, which we discovered when I took my phone into the theatre with me to play worship music to keep me calm. I knew God was there with me in the room.
I went home later that day to have a flu jab and I was to be back in hospital the following Monday to start my treatment. My consultant told me not to be disappointed if the first months of treatment did not get rid of the Philadelphia chromosome, as it was rare to happen in the first month. Each morning I took my imatinib and prayed to the Lord that he would work with the medication and my body to get rid of it. He answered my prayers, even my consultant was amazed at that.
Because my Philadelphia positive was irradicated so quickly, I could be put forward for a stem cell transplant. I had been put on the register to find a donor, and my little sister had the tests to find out if she was a suitable donor. Thankfully, she was a perfect match and in February 2018 I was able to have my transplant. The consultants and nurses at the transplant were all wonderful and supportive.
My transplant was a success, although I needed weekly blood transfusions and several top-ups of stem cells. In September 2019, I had acute graft versus host disease (GvHD), which ended up being so severe that I needed extracorporeal photopheresis (ECP) treatment. I needed a line put back in, as my veins were not strong enough to take the treatment. I was back on immune suppressants and steroids and I felt as if I had gone back to the start again. I became really poorly in December and ended up in the intensive care unit (ICU) over the Christmas period with pneumonia.
I am now 100% donor, which was confirmed in Summer 2020. I have developed an underactive thyroid which is being treated with medication. I am waiting to start treatment to lower my ferritin levels, as I had so many blood transfusions; we tried to lower the levels by a venesection every month, but we were only successful two out of the six times we tried. I am also awaiting an eyesight appointment, but there is a year waiting list. I have had my hearing tested, as the medications can damage both sight and hearing, so my consultant won’t start treatment until they have a record of both. I am still taking ponatinib until March 2023, which will be five years post-transplant. I see my specialist nurse at the long-term clinic every three months, but once I stop taking ponatinib, those appointments will become less regular.
If my GP was more aware of the symptoms of leukaemia, he would not have made me wait for blood tests – and it was only because I insisted that he did. That is why more awareness needs to be made!”
Diane’s symptom of leukaemia was:
• Joint pain
Are you currently dealing with a similar symptom to Diane’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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