A YOUNG woman from Exeter has gone from planning her own funeral to organising her own festival after defying her terminal cancer diagnosis.
Four years ago Gemma Wensley was told she had an inoperable brain stem tumour and had just months to live.
She left her job as a nurse at the Royal Devon and Exeter Hospital to prepare for the “inevitable.”
“In my head I was planning my funeral and saying goodbye to friends,” said Gemma, 31, who lives in St Leonards.
Yet despite four years of gruelling chemotherapy treatment, she remains full of life and, to the bafflement of her doctors, her tumour has shrunk.
While her long-term prognosis is unclear, she is now focusing her efforts on putting the finishing touches to Gem Fest – a festival she hopes will raise thousands of pounds for charity.
Gemma, a former pupil at Exeter College, has always been a big festival fan and regularly attended Glastonbury before she fell ill.
Gem Fest spawned out of a surprise 30th birthday party for Gemma - as she reached a landmark she thought she would never see.
Now, in its second year as a public event, tickets went on sale this week with a host of live acts and performers already confirmed for Exeter Phoenix on Sunday, April 20.
Gemma said organising the event with her friend Susan Luscombe was a welcome distraction to her treatment. Proceeds will be split equally between The Brain Tumour Charity and Hospiscare.
“We have been working really hard to pull it all together and we want to raise even more money and get even more people than last year,” she said.
“Organising it definitely gives me something to focus on. I was a busy nurse so going from that to doing nothing was hard. I like to be busy and I need something to do. Having this to organise, even though there is a lot to think about and to arrange, has kept me sane.
“I need to take every day and year as it comes. My cancer is such an unpredictable thing. Doctors can not touch it and cannot get to it. They don’t even know what is going to happen and they don’t know what they are dealing with.
“It could get worse very quickly or stay like this for several years. It has been a massive rollercoaster. One minute I am being told I only have a few months left and then here I am.
“I am still on the chemo and still going ok. All my scans are stable and I am hoping to try and come off the chemo later this year. I have been on it for four years and it has been really up and down. Sometimes things are ok and others I will be sick all week.”
Gemma was first diagnosed with cancer after going for a routine scan towards the end of 2009.
She said: “I had six weeks of radiotherapy and chemotherapy every day. I came through that ok, but a few months later I took a massive turn for the worse.
“I could not see or hear anything. I was put on a high dose of steroids but was not getting any better.
“I was told that if it carried on growing the way it was I was looking at just a few months to live.
“I was preparing for the worst. They said they could not give me any more radiotherapy, and because the tumour was in the brain stem it was inoperable. They decided to carry on with the chemo to see what would happen, but told me realistically it would be a matter of months.
“I was a hospice patient and things were pretty grim. Although I carried on with the treatment in the hope something may happen, it is still very unusual to be on a drug for that long.
“But then out of nowhere it started getting better.”
Gemma went for a scan in November 2011 she was amazed to discover the tumour had started getting smaller.
“My doctors were baffled at the sudden improvement, so I began to wean myself off the steroids,” she said.
“I had looked a lot better and had more energy in the months before the scan, but I still could not believe it. The doctors were pretty baffled but said they did not want to take me off the chemo as they couldn’t be 100 per cent sure that wasn’t what was having the impact. They cannot take a biopsy from the brain stem so they don’t know.
“I take the chemo in tablet form for five days every four weeks. The tumour is still there and needs to be treated, and I just take things a scan at a time. As long as my body can tolerate the chemo I will keep plodding along with it.
“I am a lot more positive about my future, but I do remember how I was before and that at any point things can just change. I felt ok when I first got my diagnosis and had no idea what was coming. Now, more than ever, I just take every single day as it comes.”
The festival itself is divided into two sections.
The daytime is a family orientated event and free of charge to attend. This will run from 11am - 4pm and will include arts and crafts, drama and dance workshops and much more besides.
Additionally there will be several stalls in the main auditorium selling handmade goods, facepainting, balloon modelling, a silent auction. Gemma Evans–Determan is helping to organise the stalls.
The evening’s entertainment featuring several live bands across three stages, along with comedy and other entertainment takes place between 6pm-2am. Headlining the main stage is Audio Razor while Sound of Sirens will close the acoustic stage.
“It will be pretty much the same set-up as last year. But we wanted to make it bigger and better and continue it growing every year.
“I am living and breathing Gem Fest at the moment but I do feel in control of everything. We just need to tie up the loose ends.
“I also wanted to get a local charity on board and Hospiscare were amazing to me when I was unwell and are such a brilliant charity.”
There are three joint sponsors for the event this year Ashfords Solicitors, Exeter Family Friendly and Shipman Financial Planning Ltd.
In addition to pushing ticket sales the team are also looking for businesses to donate prizes to a silent auction. To buy tickets visit www.exeterphoenix.org.uk/events/gemfest-2014. For more information and regular updates visit www.facebook.com/gemfestexeter