Less than 20% of those diagnosed with a brain tumour survive beyond five years
Colchester mum battling to survive
A young woman and mum from Colchester being given end-of-life care is fighting to survive, after being given a survival prognosis of just a couple of days.
Gemma Edgar, 33, mother of six-year-old Dylan and Noah, four, and wife of Rob, was diagnosed with an aggressive glioblastoma (GBM) brain tumour in 2014, after just a few days of migraine-type symptoms. A paediatric nurse at Colchester General Hospital until she became unwell, Gemma underwent surgery to remove as much of the tumour as possible, followed by radiotherapy. She remained well until a year ago when the tumour recurred and she underwent further surgery, followed by chemotherapy.
Gemma’s dad, Andy Relf said: “Sadly a scan in August revealed that the tumour had regrown. Plans were made for Gemma to have a third craniotomy. However, at the end of September, Gemma deteriorated rapidly and was admitted to hospital. It was heart-breaking to hear after a further scan that the tumour had grown considerably in just six weeks and was now deemed to be inoperable. Not only that, but we were told that Gemma was unlikely to survive the weekend.
“The medical care and professionalism at Colchester General Hospital were first class. Three weeks on, Gemma is still with us and is receiving superb care and kindness in St Helena Hospice. Although she remains very poorly, Gemma quickly started to amaze the staff with her strength of mind and upbeat demeanour. This mental approach, linked with her medication, has resulted in daily improvements: first she restarted drinking and then eating and then slowly her degree of alertness started to increase. Gemma is now fully alert and slowly regaining physical strength to the left side of her body which had become completely paralysed.
“Gemma still has big limitations, but we believe at the rate of improvement she has shown over the last week she may combat these too.
“We are desperately searching to see if she might be accepted onto a clinical trial to complement the current medical care and help improve Gemma’s quality of life and possibly also prolong it.
“Brain tumours kill more children and adults under the age of 40 than any other cancer yet historically just 1% of the national spend on cancer research has been allocated to this devastating disease. This is just not acceptable and is why Gemma’s mum, Barb, her brother Lee, Rob and I are all supporting the Brain Tumour Research charity in their mission to find a cure for brain tumours.”
Sue Farrington Smith, Chief Executive at Brain Tumour Research, said: “I am so terribly sad to hear of Gemma’s deterioration and inspired with how Gemma continues to fight. Gemma and her family are in our thoughts and prayers at this difficult time.
“For too long, brain tumours have been a neglected cancer. Gemma and her family should be proud of how they have helped us both to fund research into brain tumours at our dedicated centres and also to campaign for change. The Government and Cancer Research UK are now listening but there is still so much to do to bring parity with other cancers such as breast and leukaemia. We all owe it to Gemma and her family to make another push and donate in Gemma’s name. Please, please show your support for Gemma and donate now. Together we will find a cure.”
Brain Tumour Research funds sustainable research at Research Centres of Excellence in the UK; it also campaigns for the Government and the larger cancer charities to invest more in research into brain tumours in order to speed up new treatments for patients and, ultimately, to find a cure. The charity is calling for an annual spend of £35m in order to improve survival rates and patient outcomes in line with other cancers such as breast cancer and leukaemia.
If you would like to make a donation inspired by Gemma please go to www.justgiving.com/fundraising/lee-relf3
For further information, please contact:
Liz Fussey at Brain Tumour Research on 07811 068357 Liz@braintumourresearch.org
Notes to Editors
Brain Tumour Research is the only national charity in the UK dedicated to raising funds for continuous and sustainable scientific research into brain tumours, and we are a leading voice calling for greater support and action for research into what scientists are calling the last battleground against cancer.
We are building a network of experts in sustainable research at dedicated Centres of Excellence whilst influencing the Government and larger cancer charities to invest more nationally.
We welcome recent funding announcements for research into brain tumours from the UK Government and Cancer Research UK – £65 million pledged over the next five years. However, this potential funding of £13 million a year comes with a catch – money will only be granted to quality research proposals and, due to the historic lack of investment, there may not be enough of these applications that qualify for grants from this pot.
We want research funding parity with breast cancer and leukaemia. We are calling for a £30-35 million investment every year for research into brain tumours in order to fund the basic research groundwork needed to accelerate the translation from laboratory discoveries into clinical trials and fast-track new therapies for this devastating disease.
The Brain Tumour Research charity is a powerful campaigning organisation and represents the voice of the brain tumour community across the UK. We helped establish and provide the ongoing Secretariat for the All Party Parliamentary Group for Brain Tumours (APPGBT). We are supporting the crucial APPGBT 2018 Inquiry into the economic and social impacts of brain tumours and will publish their report in the autumn. We are also a key influencer in the development strategy for the Tessa Jowell Brain Cancer Mission.
Key statistics on brain tumours:
- Brain tumours are indiscriminate; they can affect anyone at any age
- Brain tumours kill more children and adults under the age of 40 than any other cancer
- Historically, just 1% of the national spend on cancer research has been allocated to brain tumours
- In the UK, 16,000 people each year are diagnosed with a brain tumour
- Brain tumours kill more children than leukaemia
- Brain tumours kill more men under 45 than prostate cancer
- Brain tumours kill more women under 35 than breast cancer
- Less than 20% of those diagnosed with a brain tumour survive beyond five years compared with an average of 50% across all cancers
Please quote Brain Tumour Research as the source when using this information. Additional facts and statistics are available from our website. We can also provide case studies and research expertise for the media.