We have all had a lot of contact with The Brain Tumour Charity over the years and have now decided to join together to form a Supporter Group to give each other moral and actual support in fundraising and continue with our desire to help the charity search for better treatments and ultimately a cure for this disease.
Susan’s story
Susan (Suez), Andy’s wife, and Louise and Kirsty’s sister was first diagnosed in 2001 with a grade 2 anaplastic astrocytoma after suffering a seizure. She underwent surgery to remove the tumour as well as radio and chemotherapy.
For many years after she continued to work and live a normal life, with regular check-ups and scans until in 2009 the tumour showed signs of regrowth. A second surgery followed (her free face lifts as she called them!) bringing with it the news that the tumour had progressed to become a grade 4 glioblastoma, which absolutely shocked us all. She underwent further radio and chemotherapy and just 5 months after surgery married Andy, with Louise and Kirsty as her bridesmaids, at what she always described as the best wedding ever, usually at other people’s weddings!
Suez continued to live a healthy life, always striving to make the most of her time with family and friends, travelling around the world with Andy and taking loads of weekends away with her Mum, sisters and Aunties, always with the spirit of “making the most of life”.
We had always faced the trials and tribulations of Susan’s illness as a family, not seeking out help or advice from any charities or help groups, but Suez came across The Brain Tumour Charity by chance when looking for somewhere to donate Christmas card money and that started our relationship with the charity. One of the first fundraising activities was at Louise’s 40th birthday celebrations where she, Suez, Kirsty and a load of friends all took part in a “Loony Dook”, which for those who don’t know is where you run into the freezing cold sea. The girls did this in February at St Andrews, and it was one of the proudest moments of all of the family’s lives watching them all do this.
What we didn’t know was that at this time the tumour had started to grow back, and just two months later a scan confirmed this, after Suez had suffered increasingly debilitating headaches. The specialists agreed that a third surgery was possible, something unthinkable even a couple of years before, and whilst this was deemed relatively successful, tragically Suez never fully recovered, her body having just taken so much over the years. On 9 October 2018 she passed away with all her family around her fighting to the last.
The advances made in treatments and surgery options in the 17 years that Suez suffered from this horrific disease showed us all the value and vital importance of the work that The Brain Tumour Charity do and made us all determined to continue fund raising, and raising awareness of the charity and its work in Suez’s memory.
Andy Chalmers, Louise Anderson and Kirsty Murdoch
Penny’s story
Our mum Penny Webster was first diagnosed at Edinburgh Western General Hospital with a low grade Oligodendroglioma, aged just 43 and recommended for immediate removal. Our world was turned upside down not knowing anything about this, what treatment was available, what support there was for mum and us as a family.
Post-surgery we muddled through as a family learning about the brain tumour journey and what to expect. Mum kept fairly well, despite her acquired epilepsy and continued life as normal as possible, including working and juggling family life. Around 3 years after diagnosis signs of regrowth started and radiotherapy followed. Again a few years later regrowth followed by chemotherapy. Sadly we received the news in March 2010 the tumour was now a Glioblastoma grade 4.
A second surgery was made but mum lost her fight on the 20th May 2010 aged just 50.
Over this time we got more involved with The Brain Tumour Charity, learning more about their cause, brain tumours, raising awareness and much needed funds for this cruel and massively underfunded disease.
Our aim is to help share the fantastic work the Charity do; supporting patients, carers/families and help fund a cure so others don’t have to say goodbye to their loved ones too soon.
Jane Nolan, Gemma Brailey and Kelly Webster
Charlie’s story
Hello my name is Gillian, my dad was Charlie. Many would refer to him as the big gentle giant. To me he was my amazing dad that I loved and still love so much!!
We had no idea there was anything wrong until he didn’t return home from work one evening. It was a really horrible cold rainy Saturday night in Feb 2013. I was 19 weeks pregnant with my second child.
My mum hadn’t wanted to worry me as I was pregnant, my dad had phoned her earlier afternoon and said he wasn’t feeling well and that he wouldn’t be home too late. It was now 7pm he wasn’t home and not answering his phone. My mum called me and asked if my husband Brian would go to my dad’s work to see if he was there. When Brian got there my dad was nowhere to be seen so Brian drove the route home that my dad would take. He pulled into the end of my mum and dad’s street and found him sitting in the car in the middle of the road with the engine running. He was really confused and his speech was slurred.
Brian’s first thought was a stroke. Brian got him home and they called an ambulance. By the time the ambulance came he had come to a bit and refused to go into hospital. A few days later he was admitted as he still was very unwell. The hospital confirmed he had suffered a bleed on the brain. He went downhill very quickly and we nearly lost him on a number of occasions.
However he did pick up and got out of hospital in the May of that year. He had really been so ill in that time he had even had to learn to walk again.
He got home and was a very different man to the one we knew before, but he was home and alive. Life was very different but we had him.
The following January he took unwell again. My mum phoned me in a panic saying it’s happening again some things not right with dad. I went up straight away and he had collapsed by this point. We got an ambulance and he was taken in to hospital, he was very ill again. It was confirmed shortly after that he in fact had a brain tumour. This had been the cause of the illness the year before but the scans hadn’t shown it because of the bleed.
My dad just got worse and worse, he never got home again and sadly passed away in the June of that year. One month before my daughter’s first birthday, three days before Father’s Day. Our world was turned upside down by this illness as unfortunately many other families.
My friends and I who have also lost loved ones to this awful disease have been working together to raise much needed funds for The Brain Tumour Charity, to try to help fund new research and support families who are going through this.
My wonderful dad leaves behind his wife Marion (they had been together since my mum was 14), myself and four amazing grandchildren who have sadly missed out on having the grandad in their lives.
My lovely dad the gentle giant, Charlie Black.
Gillian McFarlane