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In Our Hearts Stories

Less than 20% of those diagnosed with a brain tumour survive beyond five years

Gillian Fenton

A loving wife, mother and grandmother, Gillian built her life around creating a happy home for her family. She lived in the Trossachs and enjoyed the natural beauty of Scotland where her husband worked as a deerstalker with the Forestry Commission. At first misdiagnosed with multiple sclerosis, her anxious family were finally told she had a tumour of the central nervous system and she passed away six months later at the home she was dedicated to making.
 

“I miss my mum every day. I miss being able to talk to her, I went to her about everything and find myself reflecting on what she would have said about things. Sometimes I have very vivid dreams where we have conversations and I wake up feeling as if we really have spoken. It is only now I am able to talk about my mum openly and remember her without the fog of bereavement. I know only too well how little is known about the effects of cancer on the brain. Research is the only way we are going to make a difference and prevent other families suffering as we have done.”

Gillian’s daughter Sarah MacFadyen tells her story …

Mum was just 16 when she married my dad. All she ever wanted was to settle down and have a family of her own. She dedicated her life to us; wherever she was, that was home. She was our safe place, the glue that held us all together. She was a wonderful wife to my dad, she kept the house and brought up all four of us; Melissa, myself, Hayleigh and Daniel.

Mum was only 45 when she began to show symptoms and we started to lose her. At first, there were subtle signals that something was wrong. We noticed that mum seemed very withdrawn and distant. For example, she was a fantastic cook and made a lovely roast dinner but started making mistakes, like serving meat which wasn’t properly cooked. She then began to exhibit more worrying symptoms, in May 2011, my dad Alex, Hayleigh and Daniel noticed there were physical changes. One side of mum’s face appeared to have drooped and, totally out of character, she arrived two hours late for work, which started to become a regular issue. However, no matter who asked, she wouldn’t admit anything was wrong, as far as she was concerned, there was nothing wrong. She would only ever say “I’m just tired” and unless you knew her well the changes were very subtle and easy to miss.

We were worried something had happened to her which she wouldn’t or couldn’t tell us about, or that she had suffered a mini stroke. We persuaded her to go to the doctor but she said mum was probably overly tired and needed a holiday. That day, on the way home, mum blacked out at the wheel and crashed the car. She had no recollection as to how she got there or what happened. Fortunately she wasn’t hurt and we got her to go back to the doctor and this time Melissa went with her. From there she was sent for various tests in various hospitals. This process took months. We were chasing for answers all the time and the hospitals really struggled to work out what was wrong with her. She’d had multiple MRI scans showing the mass in her head, which often changed shape. Eventually we were told that she had a very rare form of multiple sclerosis (MS) and she was put on medication.

Following her first course of MS medication, mum started to have seizures and, on one occasion, I was on the phone to dad and could hear screaming in the background when she started having one of those seizures. Their remote location at Loch Katrine meant she had to be taken to hospital in Glasgow by helicopter. CT and MRI scans showed she still had a mass in her head; her brain was swollen, putting pressure on her skull. After all those months during which we had even been told it was definitely not cancer my mum received an open biopsy. We finally knew the truth; mum had a central nervous system (CNS) lymphoma, a cancerous tumour of the lymph cells.

From then on, she had to take medication to control the seizures which were dreadful and could last for a couple of hours. Having these seizures had also paralysed my mum down her left side, consigning her to a bed for many months. Mum was conscious throughout the seizures and must have been terrified. It was a very traumatic thing to witness.

Mum started chemotherapy which reacted badly with the MS medication. She was in a very bad way and the doctors didn’t know if she would survive. She was unconscious for much of the time and had to be moved to a high-dependency unit where we could only see her for half an hour a day. Chemotherapy was stopped after just two sessions and she went on to have radiotherapy. We were elated to find that she seemed to be getting better. For the first time in many months, her MRI scans showed her brain was clear. She was still bedbound with a weakness down one side but there was even talk of her being discharged. Although she wasn’t herself, we were relieved that she seemed to be turning a corner, our luck was changing. As far as we knew, she was cancer free and could begin to rebuild her life. No one had told us of her prognosis.

During her illness and various stays in hospital, I tried to give mum something to look forward to and we talked a lot about how I would teach her to snowboard and we would go to Austria together, which we planned to do after her recovery. Sadly, it never happened.

She lost her balance during a physiotherapy session and broke her femur. An orthopaedic consultant reviewed mum’s x-rays and told us her bones were in a poor condition and that she may have osteoporosis. Blood tests showed it wasn’t osteoporosis at all but cancer which had spread to her liver as well as her bones. On that day 26 July 2013, Melissa and I were told she was terminal.

Mum came home where she passed away six months later. She was just 48. My dad, who will be 55 this year, is a widower, my three siblings and I have lost our beloved mum and baby Emily has lost a grandmother who would have doted on her and loved her so much.  I was 24 at the time mum started to show symptoms of her illness, Melissa was 26, Hayleigh was just 14 and my brother Daniel was only 12. My older sister Melissa gave birth to Emily a few months into mum’s illness so mum never got the chance to be a proper grandmother which she would have loved. We all had to try and accept our situation as best as we could to be there for mum, it was time for us all to grow up. We were, and still are a close family but things will never be the same again.

I miss my mum every day. I miss being able to talk to her, I went to her about everything and find myself reflecting on what she would have said about things. Sometimes I have very vivid dreams where we have conversations and I wake up feeling as if we really have spoken. We never got to make that snowboarding trip and that is why I am planning a challenge, together with my husband Thomas, dad Alex, sisters Melissa and Hayleigh, and my brother Daniel. We will snowboard all five Scottish skiing resorts in one day. The event will raise money for the charity Brain Tumour Research which is dedicated to raising awareness and funding research to gain insight into such an underfunded yet dramatically life-changing disease. While I accept this is an aggressive disease on a complex organ, I find it so hard to believe there is not more funding available for research.

It is only now I am able to talk about my mum openly and remember her without the fog of bereavement of her plight and the disease. I know only too well how little is known about the effects of cancer on the brain. Research is the only way we are going to make a difference and prevent other families suffering as we have done.

Gillian Fenton
August 2015

Gillian Fenton

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