In Hope Stories
Just 1% of the national research spend has been allocated to this devastating disease
We are grateful to Amy who worked with us in May 2017 to share their story here. Sadly, she passed away in 2019. We remember Amy as we continue our work to raise awareness of this devastating disease and to fund research to help find a cure. She will be forever in our hearts.
Determined mum Amy Quin will mark the first anniversary of her brain tumour diagnosis by skydiving 15,000ft from a plane with her sisters. The trio are raising money for the charity Brain Tumour Research. With a prognosis of five to seven years, Amy is hopeful that research will help to identify new treatments which would mean her tumour is operable giving her precious time with her family including partner Lewis and their four-year-old son Hector.
Here is Amy’s story:
“In some ways my diagnosis has changed my life in a positive way - I now say yes to many more things, I want to embrace every opportunity I can and make the most of my time. This year, exactly 12 months since my diagnosis, I will be jumping 15,000ft out of an aeroplane with my two sisters. I did ask my consultant before I signed up and he gave me the thumbs up ‘as long as I wear a parachute.’ We’re raising money for Brain Tumour Research as, for me, this is my best chance. With quality research, maybe there will be a new treatment in a year’s time and my tumour will shrink and become operable.”
I have always been a very sociable person, curious about other people and their lives and I think that's why I love my job as a barber so much. I get to meet so many people from many walks of life.
Like many people I have a busy life. My partner Lewis runs an import business and we have a four-year-old son Hector. We are fortunate to live in rural Dorset near Dorchester and when I visited my doctor to try to get to the bottom of severe headaches I was told they were caused by tension. This didn't ring true as I didn't feel stressed about anything but the headaches continued for about six months. There were a couple of days when I woke up in the very early hours of the morning and vomited. By this stage the headaches had become so hideous they reduced me to tears.
I tried to carry on as best as I could until one day when I was at work I was physically sick and felt a loss of sensation in my face and arm. My fear was that I was having a stroke but when I was taken to hospital by ambulance I was told it was probably a migraine. I was told I would need to see a neurologist as a follow-up but there was no mention of a scan. As Lewis had health insurance through his business, we arranged for me to be seen privately a week later. Just a couple of days after that I had a call as I drove into work asking me to go straight to the clinic.
It was 13th May 2016 that I was told I had a grade two astrocytoma, a low-grade brain tumour. Lewis and my dad were with me when I was given the news. I was shaking with disbelief. Other than the headaches I felt well, and it just didn't seem possible that I had a potentially terminal illness. The dreadful headaches were being caused by hydrocephalus, a build-up of fluid, which had been prevented from draining as the tumour pressed on the ventricle in my brain. It was estimated that the tumour could have been there for as long as seven years with the symptoms only presenting themselves as it grew to the size of a tennis ball. The advanced size meant surgery was not an option, I had a shunt fitted to drain the fluid and was given the prognosis of between five and seven years. I have had a six month course of the chemotherapy drug Temozolomide and, as there has been no significant change in my tumour, I am now on a six month watch and wait period with my next scan due in July.
In some ways my diagnosis has changed my life in a positive way - I now say yes to many more things, I want to embrace every opportunity I can and make the most of my time. This year, exactly 12 months since my diagnosis, I will be jumping 15,000ft out of an aeroplane with my two sisters, we call ourselves The Mighty Quins. I did ask my consultant before I signed up and he gave me the thumbs up “as long as I wear a parachute.” We’re raising money for Brain Tumour Research as, for me, this is my best chance. With quality research, maybe there will be a new treatment in a year’s time and my tumour will shrink and become operable.
If the worst should happen, I want to be able to look back on my life and be satisfied that I achieved what I wanted. I’ve put together a bucket list which, along with the skydive, includes swimming with pigs in the Bahamas – there’s a special island where you can do this – and indulging my love of live music at festivals. Next year, I’m planning to do the Machu Picchu trek in Peru.
Along with my family, Lewis has been very supportive, as have my lovely boss customers at Flash Harry’s in Dorchester. Hector is aware of my hospital stays but I think he is too young to understand much more and we will tell him more as necessary and when we think he is old enough to cope. We are doing our best to live life as normal. The biggest change for me is that I have had to surrender my driving licence which is a blow to my social life as I have to rely on others to ferry me around.
In some ways I feel fortunate in that I am still well, I know the tumour is there but its impact on my life – for now at least – is minimal.
Brain tumours kill more children and adults under the age of 40 than any other cancer, yet just 1% of the national spend on cancer research has been allocated to this devastating disease.
If you have been inspired by Amy’s story, you may like to make a donation via JustGiving www.justgiving.com/fundraising/Amy-Quin or leave a legacy in your will via https://www.braintumourresearch.org/legacy
Together we will find a cure.
The views or opinions expressed within are not necessarily those of Brain Tumour Research. This content has been shared for information purposes only. Brain Tumour Research does not recommend or endorse any particular treatment. If you have or suspect you may have a health problem, you should consult your doctor or other suitably qualified medical professional. Our member charity brainstrust can provide additional information on treatment options.