When Deb Wortelhock was diagnosed with leukaemia 11 years ago, her first thought was that she was too healthy to have such a devastating illness. Her second was that she was too busy: her first grandchild was due any day and she had promised to be her daughter Katie’s birthing partner with her daughter's husband Geraint. “I was a university microbiology lecturer and was plotting results on the board when I realised my arm was really aching,” she says. “Then I struggled to walk up the steps out of the lecture room and I put my exhaustion down to having given blood 10 days before. I had a huge blood blister on my arm from the needle and my head of department urged me to see my GP.”
By the time Deb reached her GP she was also developing lumps on her neck and, after bloods were taken, she was sent to hospital. “Alarm bells only rang when they did a bone marrow biopsy and the doctor came to see me,” she says. “He was struggling with his words and I said to him, ‘It’s leukaemia, isn’t it?’ and he confirmed it. I still didn’t feel ill but I was told that if I didn’t start chemo immediately I would have only two months to live. In one afternoon it all went like a tsunami crashing over my life. Survival became my singular purpose.”
The hospital wanted to keep Deb in and start treatment immediately, but she and her husband Ross wanted to tell their children at home. As well as Katie they have another daughter Jess and son Joshua – and although telling them was very hard, it marked the beginning of their family approach to her illness. “A dark shadow had been cast on our lives and we were about to enter a type of hell that only those afflicted can possibly appreciate.
“Katie and her husband Geraint had our first grandchild Evan within the next few days and Ross stepped into my place as birthing partner,” Deb says. “I could only see the baby through my hospital window, but we were all strong and I never felt I was going to die. I had six courses of chemo and I was very weak but never really ill with it, although I lost my hair. However, the cancer kept coming back and my prognosis was bleak, because at that point, 10 years ago, a full transplant didn’t have a high success rate at my age – although there have been advancements since then.
“It was decided there was no other option than to have a stem cell transplant. But I was considered too old for a full transplant and advised that a part-transplant would be safer, using some of my own stem cells along with the donor’s.”
The transplant team needed justification that a full transplant would work, as they were reluctant to perform a procedure with a low rate of success. Deb was very fit and also very persuasive, and eventually her consultant decided to go for the full transplant. Amazingly, Anthony Nolan found three donors who were a good enough match.
“For me the transplant was rather an anti-climax in a way - the stem cells came in such a little bag! One of the hardest parts is that when you’ve had the transplant you’re confined to your room, which is something so many more people will now empathise with after lockdown. We all had different roles to play. Mine was to recover – but I also needed to feel good, so Jess’s role was to make me look great and get me into designer pyjamas, while Katie kept me entertained with their boy Evan. I was desperate to be well enough to cuddle him.
“Josh, meanwhile, had been so inspired by my treatment he wanted to become a doctor, so I helped him study and that gave us both something to work towards. Ross was like a dictator, in the best possible way, like the old ward sisters: take your medicine, don’t go near the dog, let’s get the duvet washed.”
Now, almost 10 years on, Deb has two more grandchildren and the family are closer than ever. “I was part of a clinical trial that paved the way for other older patients, and now we fundraise for Anthony Nolan at every opportunity. We are all so grateful to Anthony Nolan and well aware of how life-changing it would have been if it did not exist, for my children to lose their mum. I get to have small worries again. I might look in the mirror and think ‘Oh I’m all wrinkled now’ – and it’s amazing to have those thoughts instead of the grand-scale thoughts like ‘Will today be the day I die?’. It’s just fantastic, it really is. I didn’t realise at the time how very lucky I was to have those matches. I know others aren’t so lucky. We will do anything we can to help Anthony Nolan and I will always aim to be the best I can be as a result. I’m alive and I feel fabulous.”
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