10 years ago, I was going through my diagnosis of what turned out to be an incurable, although manageable, blood cancer – chronic lymphocytic leukaemia (CLL). Having mortality stop by and stare me in the face at 40 wasn’t quite what I had planned or expected. This curve ball has been one of the biggest challenges in my life and, at that moment in time, I did not believe I would even be here to celebrate my recent 50th birthday.
My GP was very good; knowing that someone of my age would probably have googled my symptoms – including overwhelming fatigue, enlarged but not sore lymph nodes in my neck, and repeated infections – he asked, “What do you think it is?”, to which I responded ‘lymphoma’. I then went through various hospital appointments in a two-week period resulting in a diagnosis over the phone at the end of the month. My first appointment I was sent to a lymphoma clinic, but on arrival the full results of my tests had been received and I was later referred to the CLL clinic.
CLL is a strange form of cancer to live with, in particular if you are on ‘watch and wait’. Most cancer patients have the ups and downs of diagnosis and invasive and sometimes aggressive procedures and treatments. With CLL you have the rollercoaster moment during diagnosis and then you’re just left there hanging in limbo with the expectation to just carry on with your life as it was. The old ‘normal’ life though has changed and has been replaced with living with cancer. One now has the uncertainty and anxiety between regular check-up appointments, always wondering if this will be the one where you’ll be told that treatment will begin.
The ‘it’s a good cancer to have’ and ‘you look so well’ quotes can begin to make one feel like an imposter in the cancer world. This can leave one feeling like you’re not entitled to the same concerns and worries. Family and friends begin to forget you are unwell. Empathy for symptoms such as fatigue and anxiety begin to wane.
I feel grateful for my family and friends and for their love and kindness. In particular, to my partner of 21 years, Paul, who has been right by my side through every moment and the obstacles have only made our love stronger.
I hope these events have not defined me although, undoubtedly, they have changed me and have given me an understanding of my own strength and how resilient we are as beings.
I have learnt to live my life like every moment is stolen. As Auntie Mame said, “Life is a banquet and most poor sons of bitches are starving to death.”