I don’t really like the word remission. What does it actually mean? I have learned to accept my CLL; it is a part of my life now and it will never really go away. It doesn’t define me, and I won’t let it.
It all started with a sore throat in the summer of 2015, nothing unusual, and I put it down to the demands of being a teacher. I never for one moment thought it could be leukaemia.
I knew a little about CLL; my aunt had been diagnosed some years prior, but it didn’t help me understand my diagnosis. My life changed in so many ways. I’m married, I have three sons, what must they be feeling? How were others going to react to my diagnosis?
I can tell you how they reacted. Some were direct and interested, others were dismissive. They thought it couldn’t be that bad if I wasn’t having treatment. But cancer is cancer, so why was this any different?
Their reactions in conjunction with the thoughts I already had on my diagnosis overwhelmed me. Sometimes, there was not a single second of the day I wasn’t thinking about my CLL. I started to go downhill fast whilst trying to come to terms with my failing health as well as my diagnosis. I showed everyone this persona of myself that I was coping, but I was in fact desperate for treatment to begin. I began to feel like I had leukaemia.
Treatment went well; I was in remission and could return to some sense of routine. Well, up until I grazed my fingers down the side of my neck and felt something unusual. A lump. I remember the horror I felt when I found it there. I struggled telling anyone about it; saying it out loud made it all feel so real.
I walked into the consultation rooms a few days later and burst into tears. “I’m pretty sure I’m relapsing!” I managed to say through the sobs. My consultant sat me down, ran a few tests, and agreed with me. In an odd sort of way, I felt relieved I was right, but it didn’t stop the tears. I felt sad. Fearful. Angry. How do you tell your family and friends that it’s all starting again?
CT scans showed the progression of my CLL and it was clear treatment would start imminently. So, the cycle began again.
But, as I sit here writing this today, my eyes flickering between the laptop and the clock as I countdown the minutes to my appointment with my specialist nurse, I feel extremely grateful.
The treatment regime is complicated to begin with and it feels like you can never get away from hospital, but it gets easier. I’ve learnt that it is okay to admit when you need help and it’s empowering to be able to do that.
Each day, I wake up and am grateful. My life isn’t as I expected it to be but sometimes I am even grateful that CLL slowed me down and made me appreciate the good things in life; the blue skies the noise of the waves on the beach, the little hands of my granddaughters in my hand, the good friends I have, my family, the laughter and the tears too.
Bethan’s son wanted to add…
“My amazing Mam, or Granny Beth as she is known to her favourite people, keeps smiling throughout everything, and is the best mam and granny around! Her granddaughters have no idea she has CLL or how it impacts her life; they simply see her as fun Granny Beth who looks after them and provides as many a treat as all grannies should!
I am taking on this year’s Great North Run on behalf of my wonderful Mam with Leukaemia Care as my chosen charity. I’ve taken part in the run a number of times – it’s incredible – but I’m particularly looking forward to this one as I will be running for such a great cause. Leukaemia Care has been a great source of information, advice and support to Mam and us as a family and we are grateful for them.
If there’s one reason to get involved in the Great North Run aside from raising money for a great cause, it’s to be a part of the ecstatic atmosphere. There’s nothing quite like it!”
If you’re like Ben, looking to get involved to raise money on behalf of a loved one, then the Great North Run is the one for you! Whilst you might just miss this year’s race, be an early entrant in the 2024 Great North Run, or secure your place in another event as part of Team LC, here.
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