I had finally got the job I really wanted, so I was sure the fatigue I had been feeling was simply just from working too hard. Surely that was the explanation? Cancer wasn’t a thought.
Before my CML diagnosis, I never really knew much about leukaemia. And there I was, laying on the couch preparing for a bone marrow biopsy to confirm my diagnosis.
I felt like I was in slow motion. I didn’t yet understand what CML was and I didn’t know what was going to happen next. I was trying to function as a normal wife and mother as well as learning how to talk about my diagnosis with my boys and my mum miles away in Canada. Those were perhaps some of the hardest discussions.
I signed up for the SPIRIT-2 trial and I was feeling okay mentally, and between September and March everything was looking good physically, too. But, with a snap of the fingers, everything went pearshaped and my numbers started going the wrong way.
We discovered that these changes were the result of a mutation, and my options were becoming limited. The looming prospect of a transplant suddenly became very real, but would this be the best possible option for me? I was having several discussions; flicking back and forth between a trial for a new drug and transplant. Ultimately, the choice was mine, but neither were looking particularly brilliant.
So, I thought about it. I cried about it. I talked about it. I prayed about it. Eventually, I decided a transplant was the best option for me. But even the best wasn’t looking too great; the survival rates were showing it would be more likely that I would die than live.
We went through the British registry, but there was nothing on there. Eventually, I was matched with a donor from Germany and we began preparing for the transplant. There were a few hiccups along the way; spiked temperatures and illnesses that stalled the process but it was now or never.
Despite the tricky transition, I got through the transplant and everything was seemingly going well. The physical changes were tricky; my hair was falling into my morning bowl of Weetabix, so a nurse shaved my head whilst I was in hospital. It was odd how different I looked.
But I’m here and that’s the main thing. 13 years down the line, and I enjoy life with my family and friends. Yes, I’m grappling with the effects of the transplant and treatment. I relapsed soon after my transplant and remain on another drug on compassionate use grounds, which controls the leukaemia. I am forever thankful to have lived to see my boys grow up. My CML journey has made me appreciate how short and precious life is. Life with CML has become my new normal, and I have to make the most of it!
I am privileged to be the inspiration behind a Unicorn at this year’s Unicornfest trail. I met
with Jayde, the wonderful artist behind Phoenix, the Unicorn that was inspired by my story. We encapsulated words that reflected the rollercoaster journey of having a chronic leukaemia. We were even able to pay homage to my sweet-themed earrings and necklace with some liquorice all-sort detailing!
Support services available
Jo phoned our helpline for information and advice when she was first diagnosed and for her transplant. A diagnosis can be a lot to get your head around, but we’re here to answer your questions or offer advice as and when you need us.
Call our free helpline and speak to our nurse on 08088 010 444 (services available Monday – Friday, 9am – 5pm).
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