“In March 2017, I went to visit the GP after I was taken ill at work. It turned out that I had a virus, so they continued doing routine blood checks. It was then they noted that my lymphocytes were raised, as was my white blood cell count. My bloods were tested every three months routinely, and I was told there was nothing to worry about.
The testing continued for a year, and in March 2018, I was referred to haematology for further tests. I asked my GP what he thought was going on and he explained they may be looking for a type of blood cancer, but assured me there was nothing to be concerned about as I was classed as young and that people are living for many years not needing treatment for the type of blood cancer they were checking for.
In May, I visited the hospital expecting to have further tests and to be told what they were looking for. However, they diagnosed me saying “You have chronic lymphocytic leukaemia (CLL), it is unlikely you will need treatment for 10-15 years. Here’s a booklet, read that – it answers all of your questions, and we will see you in six months. You are now on Watch and Wait. Stay out of the sun, don’t smoke and keep leading a healthy lifestyle.”
It was totally surreal and scary. I was left wondering why they weren’t doing anything. Will I die soon? At the same time, I found the booklet itself even more worrying, so I avoided reading it and buried it in the bottom of the drawer. I booked another appointment with my GP who was very supportive. I wrote a list of questions and he sat and went through each one slowly, reassuring me that it was normal to feel like I did and it was also routine not to treat CLL immediately.
After the first six months, I noticed that I had a lump in my neck, which was confirmed to be a part of the CLL.
Over the coming 18 months, I saw different doctors at the hospital and I felt each one gave me conflicting information. However, my GP came to the rescue once again and wrote to the consultant. He explained that I needed consistency and that I should be seen by the same doctor each time. Fortunately, this has been taken on board and ever since I have been speaking with my consultant at each appointment.
In March 2021, three years on from my diagnosis, I was told I needed treatment, and would have six cycles of FCR. Initially I coped well, however I became neutropenic during cycles four and five. This resulted in many hospital stays and becoming very poorly, so it was decided that five cycles was enough. I am now in remission and have been since November 2021, but it has taken a whole year since the start of my FCR treatment to start to feel well again.
I’ve worked hard to get back to who I was before the treatment and I’m proud of what I have achieved and how I have dealt with it all. However, I also recognise that I don’t need to be a hero or martyr and that it’s okay to sit down some days, do nothing and just be. I’m blessed with amazing, supportive family and friends. They truly kept me going through the tough times.
The highlight of all this was in February this year, when I actually got to meet my buddy (from the Leukaemia Care Buddy Scheme) Bethan. She came to Wales with her husband for a short break, and the four of us met up for lunch and spent the afternoon laughing, crying and sharing our stories.
Lifelong new friends have been made and for that I am truly grateful.”
Do you know what the six most common signs and symptoms of leukaemia are? They are:
• Shortness of breath
• Fever or night sweats
• Bruising or bleeding
• Bone/joint pain
• Repeated infections
Are you currently experiencing any of these signs and symptoms? 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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