About The Three Tumours
About The Three Tumours
About The Three Tumours. We are a new North East Charity determined to support brain tumour sufferers and their families. Four of us set up The Three Tumours Charity to celebrate how far we’ve come from our original Brain Tumour diagnoses.
We are here to share our experience and to offer support in coming to terms with the diagnosis, treatment and finding a new purpose to life.
We don’t have all of the answers but have probably had the same questions and emotions that you or your friend or family member are coming to terms with.
We believe a journey is easier with a guide, we’ve been there we’ve made the mistakes and want to help you avoid making them.
We aim to:
- Signpost resources that might help you.
- To raise awareness about brain tumours.
- To raise funds to find a cure and improving the quality of care for sufferers and families.
Mr Surash Surash
I have been a Consultant Neurosurgeon in Newcastle since 2011, having trained in Leeds previously.
My main area of interest is in tumours of the brain, not just on a clinical side, but also in research too.
Having completed a Doctorate in Medicine in Leeds, looking at killing tumour cells, I have also extended my research areas into clinical trials, leading on the current FLAGS trail in Newcastle which looks at the use of the ‘pink drink’ for high grade brain tumours.
I am a keen supporter of brain tumour charities, both regionally and with the main brain tumour charities nationally. I am also passionate about raising support locally and bringing research into our area.
When not operating, I am a keen family man and an amateur DIY/Landscape gardening enthusiast!
The Founders of The Three Tumours
In October 2012, I was finally diagnosed with a brain tumour. Having spent several months visiting doctors to complain of nausea, dizziness and a lack of concentration. At the time, I felt pleased to finally have a diagnosis. How inappropriate these feelings were!
I was originally told the tumour was probably a GBM 2 and I would probably make a full recovery after a treatment. I was flown back from the USA where I had been working.
Interpretation of a further scan indicated it was likely to be a GBM4. I don’t recall I was aware of the significance at the time, as my family tried to protect me from the implications and I was perhaps incapable of comprehending.
The craniotomy was a success getting 95% of the tumour; subsequently had 6 weeks of chemo-radiation and 9 months of chemotherapy. The mean prognosis for a GBM4 with treatment is only 12-18 months.
I am pleased to be still be alive, over 5 years on. I can exercise; my written and oral communication skills are still strong and I am driving again.
However, my life has been significantly impacted. Emotionally, I continue to be as positive as possible, but I’m simply not the same person I was. I feel a sense of loss and anger “why me”, why does my family have to suffer this.
Yet, I’ve found new meaning in my life, I’m kinder, more empathetic and emotionally aware. I volunteer regularly for a wide range of causes. I’ve taken up a host of new hobbies, such as oil painting, playing the guitar and DIY.
“Never give in, never give in, never, never, never, never—in nothing, great or small, large or petty—never give in except to convictions of honour and good sense.” Churchill
That and… “Live life like you’ve stolen it”
Sadly Graydon lost his battle with brain cancer in February 2023, but his legacy will live on.
I am married with 4 girls. I previously worked for 25 years as the head of art at schools around the north east. My life consisted of teaching, golfing, cycling and swimming. At the age of 45 I was diagnosed with terminal brain cancer GBM grade 4, and was given 12-14 months to live.
After my first operation on April 8th 2011, I began chemo-therapy and radiation, adding up to a total of 8 month chemo-therapy and 8 week radiation therapy. After the long period of completing my radiation therapy things started looking up but then the cancer came back. Then came my second operation, things totally changed. I couldn’t speak or recognise simple things such as doors, windows and even my family. This is why I call my four daughters 1,2,3 and 4 (1 being the oldest and 4 being the youngest).
Two years on from all the speech therapy and struggles, I came along another hurdle. I was diagnosed with epilepsy, causing myself to have seizures and more medicine. I also lost my sight from half of my view downwards, not allowing me to see below me unless I physically move my head to look.
I haven’t let my illness stop me from living my life, I have ticked things off my bucket list and am living my life to the fullest.
As I can no longer work, for the last five years, my time has been dedicated to numerous charities, including Local community work and working with people affected by strokes.
The Three Tumours gives us a chance to send a sense of hope and positivity to others that may be affected themselves or someone who has someone close effected by brain tumours/brain cancer.
My motto: “Don’t count the days…make the days count”.
Sadly, Ian passed away on Friday 31 July 2020 and will be sorely missed by everyone he came into contact with. He was a truly inspirational person.
I was diagnosed with a grade 4 glioblastoma when I was 19. I had 5 brain operations and intense radiotherapy. Everything went wrong so quickly and I ended up with the tumour growing fast and I suffered a major infection. I lost most of the use of my right side.
I had a lot of anxiety walking or using my right side when I got home, I always felt like I was about to have a seizure.
I survived and have been stable for over 6 years. I go to Physio for my right side and it is much better then it was. I started my own personal training business, Howard Fitness, and have developed a loyal client base. In addition, I coach young boxers and help other cancer patients get on with their lives.
Richard Stewart was one of the founding members of the charity. He was instrumental in setting up the charity and raising funds. Unfortunately this cruel disease took Richard from us and his wonderful family, in September 2019. Gone but never forgotten, rest in peace Richard.
“I am 64, married for 42 years with three sons and four beautiful grandchildren.
Having been misdiagnosed in February 2015 as having had a stroke, I was eventually diagnosed in July 2015 with a GBM4 and given 12-15 months to live.
Unfortunately, during surgery August 2015, my optic pathway was damaged, I lost my left peripheral vision in both eyes.
I considered myself to be very fortunate and managed to do most things, all be it at a slower pace. I miss driving such a lot.
Sadly in Feb 2019 it was found I have 2 new tumours, both inoperable and my mobility had been compromised. I am just out of hospital after having a fall.
Without the continued support from my family and friends I am not sure I would be here now.
I will not let this beat me, the fight is not over yet.”
Representatives of The Three Tumours
The Representatives of the Charity, volunteer and give their valued time and effort into ensuring The Three Tumours Charity fulfils it’s aims.
The volunteers are: Claire Downs; Graydon Downs; Vincent McCluskey; Mark Walsh; Iris Rutherford; Karen Devlin; Alex Brown; Linda Hardy; and Jo Ede.
Claire Downs - Chairperson
See Claire’s story
In October 2012 my husband Graydon was diagnosed with a GBM4 brain tumour. He was told that he would probably only have 12-18 months to live. I am overjoyed to say that against all of the odds 8 years later he is still here! I would hope that my love and support has been a contributing factor. I am so proud of his positive and determined attitude.
I am a Trustee and the Chairperson of the charity. The Three Tumours is extremely important to me as I know that unfortunately we won’t be able to find a cure in our life time but we must do all that we can to fight this terrible disease and to raise awareness and of course funds for essential research to help others in the future.
The most important purpose of the charity to me is to provide support and guidance to sufferers and their families as after the devastating diagnosis you have no idea what to do or where to turn. I know at first hand how this feels and hope that my experiences can help in some way.
Graydon Downs - Treasurer
See Graydon’s story
See Karen’s story
In December 2013 I was finally diagnosed with a very large brain tumour. The then GP said I had depression and gave me antidepressants. I suffered with terrible travel sickness and kept going dizzy when standing up. Thankfully I changed my GP and the new one sent me straight for an eye test, who sent me straight to Sunderland eye infirmary to do some tests. Who referred me to Sunderland Royal hospital, where I had a MRI scan on a Saturday afternoon. The following Monday morning I was admitted, then transferred to the RVI for emergency surgery the next morning. My tumour turned out to be a grade 1 Meningioma.
It was hard to come to terms with what I’d been through. I was very confused and had to really think about the words I wanted to say, I’ve also be left with weakness in my left side.
6 years later I was diagnosed with another grade 1 Meningioma, which was picked up on a routine surveillance scan and it was very small. I had 1 dose of seriotatic radio surgery and a scan 6 months later to see if the treatment worked.
I count myself lucky as I was told I should be at least partially paralysed. Through the support group I’ve made some very good friends.
Hi everyone! I am Alex and I am one of the newest trustees for the charity. I became involved with the charity when they joined a local networking event my dad attends. He explained they were looking for people to help promote the charity and soon after this I became involved. I have always been involved with fundraising – mainly for Cancer Research UK, but once I learnt more about the charity and the statistics for brain tumours and funding for research around this I knew this was something I wanted to get involved with.
I am a full time teacher and university lecturer and often get my students to help with the fundraising. Those who know me would probably best describe me as this little one usually asking for money for raffles and other fundraisers. Those people will probably also tell you that it works in their favour to give me the money and keep me quiet!
I am a friend of the Hardy family having known them for several years. When they told me of the plan to walk Hadrian wall, I immediately offered my assistance to walk with them. I was humbled to be able to spend all the walk with the team and to find out more about each of them. This in turn led me to find out more about their plans for the charity which I knew I wanted to be a part of.
Although I have not suffered from a brain tumour myself, I have numerous friends and family that have, and this has made me passionate about increasing the funding available. The charity has been a place for people to get more information about what is happening to them from people who are going through similar experiences.
I am a trustee for the charity and The Three Tumour’s is important to me as it is a place, I know that people can come to when they need someone to listen and perhaps some guidance. Helping the charity grow will give more people the opportunity to get this help.
See Jo’s story
In May 2008 after being very tired all the time for some months and sleeping through a whole bank holiday weekend, I was finally diagnosed with a brain tumour. Apparently I was given 48 hours to live if I hadn’t have reacted to steriods. It was a long and difficult journey to some semblance of normality and coming to terms with the effects of the tumour. I still have some difficulties with getting words out and being able to explain things, but it is better than it was.
I am not the same person as I was before and the most annoying thing is that I don’t drink that much any more as I don’t know what I like these days, apart of a good old cup of tea!!!
I volunteered for a national brain tumour charity but it didn’t quite feel right as they really didn’t have much going on up in this area. A friend of mine introduced me to this charity at a support meeting and I enjoyed the company of others who had gone through similar experiences. I am now part of the team that steers the charity and feel that I can now make a difference in supporting others and raising vital funds for research.
You Are Not Alone
Local Support Near You
Our support group meet at Eldon Square Leisure, Grey’s Quarter, Newcastle-upon-Tyne, Tyne and Wear, NE1 7XY. If you would like to know more about The Three Tumours and how we can help, make sure to pop down and meet others dealing with similar issues.
The fourth Wednesday of the month at 11 am.