Kirsty Edwards , aged 18, and her fiancée Daniel Clarke, age 19, from Coalville, Leicestershire, recently stayed at the Youth Cancer Trust for the very first time. Kirsty found out about the charity when she saw a leaflet in the Oncology Department in Leicester Royal Infirmary.
Kirsty and Daniel had only been together for a month when Kirsty was diagnosed with a brain tumour in September 2007.
Kirsty had been enjoying a glittering career as an acrobat / gymnast and had just won a scholarship in the Midlands to further her training.
Kirsty explained what happened “I started to get head spins. Everytime I turned over on my left side in bed I would feel really sick and dizzy. My symptoms started at Christmas in 2006. I was studying for my GCSE’s at the time and managed to pass 11 – I don’t know how I did it now looking back, as I felt so ill.
It took 9 months to be properly diagnosed. A locum sent me for 9 pregnancy tests and put me on anti-sickness pills, which obviously didn’t work.”
It takes, on average, 7 months to be diagnosed with cancer as a teenager, causing obvious delays in treatment.
“I was then told it was my ear, then ‘Vertigo’. One of the consultants made me sit on a couch and then pulled me back really quickly to see how I felt – it made me feel so ill and my eyes went into spasm! I went back every month for a while and they would keep repeating these ‘Vertigo’ tests.
Finally, one of the consultants asked for a second opinion on the ‘Vertigo’ and I was sent for an MRI scan. It was then that I was diagnosed with what was either a cyst or a tumour.
I then had another scan which showed a growth the size of a chestnut – After completely freaking out, I decided to give my tumour a name – ‘Bob’
2 days later I was in hospital in surgery. It took 6 hours to remove the whole tumour and I was in for 6 weeks. Poor Dan had to drive 45 minutes every day to come and see me and unless Dan gave her a lift it would take my mum 3 hours on a bus
After my operation I was in intensive care but because I was on a Pediatric Ward I was not really given much attention as there were little children for the nurses to look after. When my food was brought to me I couldn’t reach it to eat so started to lose a lot of weight. My speech got worse and worse as I wasn’t receiving the right rehabilitation, which you need after this type of brain surgery. I developed Mutism and could only speak a few words to my parents or Dan. I wanted to communicate but couldn’t get the words out.”
A month or so after Kirsty came out of hospital; she had a course of radiotherapy for 8 weeks, along with Chemotherapy every Wednesday.
“This treatment took place in 2 different hospitals which meant I would have to go by hospital car and it would take pretty much the whole day.
Losing my hair and finding it in clumps on my pillow annoyed me so I shaved it off.
Every single day Dan would be there beside me until 10 every night after my mum went home to be with my little sister.”
Dan would sit and study whilst Kirsty slept.
I asked Dan how he managed and he replied that he had a strong faith in God and that had helped him keep strong.
“Just before Bonfire Night I came out having been back in for a further 5 weeks as they were concerned about the fluid on my head and wanted to watch me whilst I finished my radiotherapy.
I looked terrible with no hair and a nose tube, but I didn’t care as I wanted to watch the fireworks.
After Christmas Kirsty explained how she deteriorated again and became very weak and tired.
“I couldn’t get out of bed. My dad would have to carry me upstairs. I slept all the time, spending everyday on the sofa or in bed. I got worse and worse and started Chemo again a week after my 17th birthday – 3 days every 4 weeks for 11 months. I got an infection in my Hickman line as it wasn’t in properly– an intravenous catheter most often used for the administration of chemotherapy or other medications. I had a horrible blister so they had to put another port into my belly so I could also be fed through it.
My main nurse was trying to help me with my speech, it felt so weird trying to speak again but gradually it got better and better, but my walking got worse and worse and I was in a wheelchair all the time
Half way through chemo I got E-coli from the hospital, I was so sick, I couldn’t drink or eat. . Dan was on holiday and I didn’t tell him as I didn’t want to worry him. I lost so much weight going down to 6 stone.
I then had a blood transfusion as my blood platelets were so low. I had a really bad reaction to one of the transfusions. Luckily Dan was with me as my neck swelled up and I couldn’t breathe. Dan found a nurse to come and give me oxygen.
I was constantly in and out of hospital. I just wanted to be out whenever I could.
Then one day, Dan took me in to hospital again as I had a high temperature. The next morning I was walking to the toilet with my drip stand and the next minute I was on the floor having fainted – luckily a nurse caught me. I had had a mini heart attack and had to be resuscitated.
After that they stopped the chemo as it was too risky.
It was such a worrying period but I had a scan just before Christmas Eve and I was told that I was clear!! It was a fantastic Christmas present!!
Not long after Kirsty’s 18th birthday she had another scan as she felt something was wrong but fortunately, it was all clear.
“Since then my walking has got better and so has my talking. I used to be in a wheelchair all the time but I started to use a walker.
The part of the brain where I had my tumour affects balance, talking and walking.
I still use my sticks and walker sometimes or just hold hands with someone usually Dan.
In august Dan proposed to me. I laughed as I didn’t think he was being serious. He made a speech to me over dinner and then pulled out the ring. It put me off my chocolate cake!!
Dan stuck by me through everything. We had only been together for a month or so and I’m not the same person as I was before my brain tumour.
“Once Dan graduates we will get married. My garage is being converted so I can have a ground floor room, en suite, and everything is being flattened to maker it easier. We will live together at some point in the near future.
We didn’t think the YCT would be this big – we thought there would be less people here… I loved the fact there was more to do and more than we ever expected.
It’s been great fun.
Unfortunately sailing had to be cancelled because of the weather and I really wanted to do that – we will definitely be back again!
Doing new things, I’ve never tried before, with people who been through the same thing as you is great for making you feel confident again. We are all going to try to come back next year with the same group.”
Tracy Ann House feels safe. I don’t have to explain to everyone here what’s wrong with me but if you go away on holiday elsewhere you have to keep explaining.
The Youth Cancer Trust would like to thank Kirsty and Daniel for allowing us to publish their story