In Our Hearts
Less than 20% of those diagnosed with a brain tumour survive beyond five years
The diagnosis of a brain tumour is devastating for the patient, their family and friends.
For these people life will never be the same again.
These very brave people will remain in our hearts for ever and it is because of them that we are fighting to find a cure so that no other family should have to suffer in the same way.
We thought of you with love today, but that is nothing new.
We thought about you yesterday, and days before that too.
You are forever in our hearts.
“Brain tumours take every bit of you, everything shuts down. Doctors don’t prepare you for this, probably because they are trying to protect you, but I think they need to be more up front. The tumour took away Sue’s body and mind and part of her personality. It affected her whole being. She couldn’t talk or even express how she was feeling. In the last few weeks the only way I could tell how Sue was feeling was by looking into her eyes – that was our connection, and how we expressed our love.”
It was at a party thrown by a colleague of hers at Reed Employment that Sue and I met 35 years ago. A friend of mine was temping with them, which was why I went along with other friends. I remember it was 8th January 1981, it was snowing and we were somewhere in deepest, darkest Surrey! I walked into the kitchen where all the food and drink was and there was Sue – the lady of my dreams! We started chatting and really hit it off. In fact, each of my mates and I paired off that night, two of us later realising we had met our future wives at that same party.
We got married in Kingswood Church two years later and were soon blessed with children; Holly was born in 1984, then Rachael in 1986 and David in 1989. Sue adored being a mum; she loved every second of it. She would often say: ‘if God could give me one more day, I would ask for a day with my children when they were small.’
Some years later, we spent a glorious holiday in South Africa, staying with Sue’s sister Gill and her husband, where we found ourselves getting very involved with the Church out there. It was a year after Nelson Mandela had been released so we were there at a wonderful time, seeing God doing amazing things.
Our faith in the Lord inspired us to return to South Africa, this time with our young family, where we stayed for seven years from 1991 to 1998. It was an amazing time in South Africa, bringing up our family, working and serving God in our local church, where we went to Bible School and graduated after two years in 1995.
After seven wonderful years in South Africa, Sue and I felt it was time to return to the UK. Sue and I remained very active in the local church and also picked up her career at Reed Employment, where she was very career-minded. She eventually became a Senior Regional Manager, instrumental in setting up a Reed branch in Poland. Sue treated everybody as friends, whatever their rank or level of seniority and everyone who worked for her or with her loved her. They admired her for her passionate commitment to whatever she did. Sue always gave 100% of herself.
During the last three years of her life, Sue worked for Adecco, again in career recruitment. It was a move she was excited about and a challenge she thoroughly relished. We also ran fitness clubs together in the evenings. Sue was very healthy and always very nutrition-conscious – she loved helping people with their weight and was a strong advocate of a healthy, nutritious diet. She also swam and went to the gym and was a fit and healthy person. However, our lives were about to change forever and not in the way we could ever have imagined.
It was early in 2013 when Sue started to experience pains in the side of her face – a neuralgia type pain, but far more extreme. She was never one to make a fuss, but the pain wasn’t going away so in July 2013 she had an MRI scan. We were told she had a low grade astrocytoma of the left insula, which they didn’t suspect was fast growing and might never become a problem. It was apparently so deep in the brain that it was untreatable and incurable.
They didn’t even do a biopsy at the time, but it was like opening a black box that couldn’t be closed. It was devastating news for all of us as a family and yet our hope and our faith remained strong. We all felt, knowing the person Sue was, she would beat this.
Sue’s pain was brought under control with medication and we kept being told there was ‘nothing to worry about’ – it was just a case of watch and wait. We wanted to be sure that this was the best option so we sought a second opinion with world-renown neurosurgeon, Henry Marsh CBE. His verdict was that there was an extremely small area of abnormality in the left side of the brain which was very slow growing, but so deep into the brain that there was nothing which could be done. He told Sue to ‘go off and live your life’ and confirmed that there was nothing on this planet that could help her, not even in America. So that’s what we did and decided to look up and trust God, despite our devastating news.
It felt utterly numbing, but we had our faith and put our trust in God, and he was a source of comfort and strength. We stayed strong and full of belief and determined to live life as best we could. As a family, we pulled together and resolved to keep pressing on, come what may.
In May 2013, a month before Sue’s diagnosis, I had been diagnosed with prostate cancer and found myself having to deal with my own problems while also coping with Sue’s. I felt very low at this time and suffered with depression, but something inside of me kept my belief that things would be ok for both of us.
In August 2013, I had an operation on my prostate, which thankfully went well and now I have yearly check-ups. Sue, despite her own health issues, was an absolute rock for me in the midst of all this.
Our son David, his fiancée Hazel and their son Ryan, eight months, came over from New Zealand in December 2013 for their wedding in Glasgow, which is Hazel’s home city. This meant so much to Sue, especially being able to experience the joy of being a grandmother and having cuddles and precious time with Ryan. It was a wonderful period of celebration and a break from the norm of hospitals and doctor’s appointments. Afterwards, life carried on as ever, but normal it never was – living with this type of disease!
In June of 2014, Sue wasn’t feeling right with more pain and cognitive issues around memory, speech and general confusion. We arranged another scan after our GP pushed Sue to have it, which revealed that the tumour had grown. Every appointment seemed to produce more bad news. We were on a rollercoaster that we couldn’t get off!
This time a biopsy was scheduled for 17th July 2014 and ironically Sue suffered her first seizure the night before the procedure. She was rushed into St George’s, Tooting. The surgeons debated whether the biopsy would still go ahead. Our eldest daughter Holly was getting married the following month to her fiancé Lewis and she was desperate for her mum to look how Sue had imagined. The neurosurgeon was incredulous when Holly boldly asked him not to shave her mum’s hair because her wedding was just three weeks away!
After the biopsy which confirmed that the tumour had upgraded to a glioblastoma multiforme grade 4 (GBM4), the neurosurgeon smiled at me and said: ‘Tell your daughter I saved her hair’.
Sue was able to attend Holly and Lewis’s wedding and she looked stunning, which was a miracle in itself, considering that she was still recovering from the biopsy.
Following on from the biopsy in July, we went into automatic pilot. A course of chemotherapy with concurrent radiotherapy was planned, starting at the end of September. The idea was that Sue would have three cycles of temozolomide at home and one cycle of intense radiotherapy every day, lasting six weeks. This seemed to stabilise the tumour for a while, but Sue had a terrible allergic reaction to the chemotherapy which affected her skin and made her feel very ill. On top of this she was in and out of hospital with seizures and chest infections.
In the end, Sue only had two of the three cycles of chemo and then it was decided they should be stopped due to the adverse reaction the chemo was causing.
As a last resort they tried Avastin, but Sue started to deteriorate daily. She became very confused and we witnessed her struggles to speak and walk. It was heart-breaking to see such a vibrant person, who was always full of life, who loved life and her family, having the life sucked out of her. Nevertheless, Sue still had her happy and positive nature and was still going to Church where it was humbling to see her focus on encouraging others shoulder what they were going through.
A good friend asked Sue: ‘Why you?’ to which she answered: ‘Why not me?’ We both believed that we live in this world where there are lots of horrible things that we cannot control, but we have to put our faith in God. Brain tumours, like any cancer, are random and can strike anyone.
Even before Sue was diagnosed, she would say: ‘I have had a wonderful life and been blessed and wouldn’t change a thing.’
It was a very challenging time for the family and we all dealt with it in different ways, but the glue for all of us, which helped us through, was the love of God. The strength of our family – Holly, Lewis, Rachael, David and Hazel, was a huge source of hope for Sue and myself.
In September 2015, Sue and I went on a cruise for a couple of weeks, even though we couldn’t get insurance for either of us. I am sure people questioned our decision to go, considering Sue’s health, but the consultant told us to go. It was again a break from the Avastin treatment. We sailed on the Britannia around the Mediterranean and Sue got off at Gibraltar to see her sister Gill who lives in Spain. Sadly, Sue couldn’t remember anything about the trip afterwards, because by then her memory was so bad. However, I know she enjoyed the holiday and it was a very special time for us as a couple as we literally ‘lived for the moment’.
We had an appointment with the oncologist at the Royal Marsden on our return, who again had more bad news for us. The Avastin was not working and so that was it – no more treatment, only palliative care. The end of the road had been reached.
For the last three months, I didn’t work at all. We remained positive in our faith and our trust in the Lord that there would be a miracle. I felt that if anyone deserved a miracle, it was Sue, but it didn’t happen. It didn’t, however, dent our faith.
It was so tough seeing Sue increasingly debilitated. We had a bed for her in the lounge and for the last month she was bed-ridden. She never lost her sense of humour, even though she was no longer able to communicate at all.
Sue died at home on 1st December 2015, holding my youngest daughter Rachael’s hand and it was such a comfort to know then that she was in heaven and to know that one day we would all see her again.
As hard as it was, and still is for us as a family, we have peace that Sue is in the best place, in heaven, happy with the Lord, with no more pain and no more tears. In the end she was ready to go and it was so comforting to know she had been released from her suffering. It’s impossible to romanticise pain, suffering and death and I will not try to do so. Therefore, I will say it was a relief to see it end for Sue… someone who I loved so dearly and who lived life so fully.
We knew Sue wanted to be cremated and Holly, Lewis, Rachael, David, Hazel and I, knowing the songs she loved, planned her funeral for close friends and family. We wanted it to be colourful and that’s what it was. Sue’s signature song which she was known for at Reed - Simply the Best by Tina Turner, was played as well as Gospel songs that Sue loved. It was so fitting, because Sue was SIMPLY THE BEST.
After the cremation service, we held a celebration of life in church and 300 people came. The atmosphere of love towards Sue was overwhelming and a day the family and I will never forget.
Shortly after Sue passed away, we had new life in the family when David’s wife Hazel gave birth to Ella Susan Thomas on 30th January 2016 and Holly and Lewis had baby Sienna Hope Sue Still on 31st May 2016. It was always going to take two beautiful little girls to replace the wonderful person Sue was!
This summer, Holly, Lewis and I went to Cornwall together for a short holiday. During this time, our fundraising group ‘The Song for Sue Foundation’ was birthed. We began to plan a dinner dance with an auction, not knowing what response we would get. We needn’t have worried, however, as all the tickets sold out within just one week!
Reed Employment sponsored the evening which more than covered our expenses, so we hope to be in a position to sponsor at least four days of research into GMB4s at Imperial, London.
Brain tumours take every bit of you, everything shuts down. Doctors don’t prepare you for this, probably because they are trying to protect you, but I think they need to be more up front. The tumour took away Sue’s body and mind and part of her personality. It affected her whole being. She couldn’t talk or even express how she was feeling. In the last few weeks the only way I could tell how Sue was feeling was by looking into her eyes – that was our connection, and how we expressed our love.
Sue was never a fearful person, but I remember her once saying she would hate to be trapped in her own body, unable to communicate and that’s exactly what happened. It is a horrible disease and we really need more awareness to drive far greater funds towards research. As a family, we therefore stand committed to the cause in Sue’s memory.
I am absolutely convinced that there is a cure out there and that one day it will be found, although sadly it will be too late for Sue. If The Song for Sue Foundation can play a part in finding this cure, then what a legacy this will be for such an inspirational and loving woman, who served God, her family and her friends until her dying day.