Emily was 18 and just about to start her second year studying textiles and fashion when she was diagnosed with Acute Lymphoblastic Leukaemia in 2009. She had just qualified as a studio and gym instructor in her spare time, and was a black belt at karate – so it’s fair to say she was pretty fit and healthy.
It took 6 weeks from initially starting with a pain in her chest, which got progressively worse, to finally get a diagnosis of leukaemia requiring urgent treatment that had to start the next day.
Emily was told initially that she would need 2 years of treatment – the first 6 months of which would be intensive and mean she would spend most of that time in hospital.
With the nearest teenage cancer ward in Leeds, she was faced with making the immediate choice – transfer to Leeds that day and spend most of the next 6 months in hospital, an hour away from friends and family, many of which wouldn’t have transport to visit regularly. Or, have the same treatment programme on an adult haematology ward at the local Castle Hill Hospital, just 10 minutes from her home and all the people that mattered to her. Either way, most of the time would be in a room on her own as she would be at risk of infection, so knowing that, the choice was easy – stay local.
Emily’s treatment plan quickly changed as it was discovered she would need what most people know as a bone marrow transplant, and there were many complications along the way that changed her prognosis.
Treatment was tough right from the start, but after just a couple of months things took a turn for the worse and a stay in intensive care, fighting for her life, had long term impacts and left her battling to get strong enough to be able to have the transplant once a donor was found.
Emily spent most of the next year in hospital, having endless rounds of chemo to keep the cancer under control whilst she recovered enough to withstand the transplant, yet in all that time she never really got to meet any other patients, and certainly none her own age, going through the same kind of experience she was.
Many of her friends were scattered around the country at university – they had new adventures, new friends, new lives, whilst Emily felt like hers was on hold. Her college was less than supportive, so even on the few occasions she was well enough to do work she struggled. Friends and family were with her as much as they could be, being there around their own work, college, university and visiting times. The staff at Castle Hill Hospital were great, and really helped to keep her spirits up on bad days.
Emily was lucky that she actually lived very close to the hospital she spent most of her time at. For some people. local isn’t an option, they have to travel for specialist treatment elsewhere, and for some, the nearest unit is still a long drive away and cancer means days, weeks, months in hospital. We found out, on our travels to Leeds after transplant, just how gruelling long days and travelling can be when you are suffering the side effects of cancer treatment, and how isolating that can be.
Emily just wanted to be “normal” again – to be at the gym, at karate, shopping, out with friends, walking the dog, back at college; but even if she had recovered, she was still going to be left with long term health problems and her life had changed – some options were no longer available to her. There was no point even thinking about whether or not she still wanted to apply to be a PT instructor in the RAF. She couldn’t go straight back to training for karate. She wasn’t strong enough to do a gym class herself, never mind think about teaching one. Two years out of college and all her year group had moved on, whereas she would be back at square one. Even if she recovered her life had changed.
We saw how the impact of cancer and the side effects of treatment can be devastating, both physically and mentally. Some scars are less visible, and some take longer to heal than others, and the effects can be felt for years afterwards.
Emily lost her fight in November 2010 – and for her it was a fight, and she never gave up. She made the most of her 14 months with cancer, despite everything thrown at her, and she amazed us with her strength and determination. She showed us that beating cancer is more than a physical battle; it’s about finding ways to cope with the way your life has changed. About finding things that you CAN do, rather than miss the things you can’t. Having something to look forward to, finding something positive to take your mind off the negatives. Reducing the isolation, having company that you can share experiences with, building new support networks…coping with cancer is as much about the psychological as the physical.
That’s why we formed Kickstart - because we want to help more young people like Emily live their lives, despite cancer.