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.
“I was aware of brain tumours, but had never equated them to brain cancer until Dad was diagnosed. I spent an inordinate amount of time researching treatments such as electric therapy in Germany, as well as immunotherapy trials, but it was soul-destroying not to be able to find anything available to Dad no matter how hard or far we looked.”
Here is Arthur’s story as told by his son, Malcolm…
Mum and Dad were married for 41 years and, although Dad worked long hours (he was an accountant with his own firm – Arthur Boyd & Co), they were never apart. They had three sons, Grant was the oldest, me – Malcolm in the middle and then James.
Dad first noticed a slight slur in his speech in late November and this was confirmed by those close to him – he was very softly spoken – so he went off to see the GP. After seeing a couple of specialists in case it was a mini-stroke or myasthenia gravis, Dad had a first brain scan in early December 2015, swiftly followed by many more scans and tests.
It was on 17th December, that my world was rocked forever. I remember dropping the phone and breaking down, having heard that the reality was even worse than we had all imagined. Dad had a brain tumour and the neurosurgeon at Belfast City Hospital wanted to operate in the next few days.
The surgeon had explained to my parents that the scan suggested Dad had a grade 4 glioblastoma multiforme (GBM4), but that she couldn’t be sure until she had the results of a biopsy. She offered one option where Dad had a biopsy and was then treated with radiotherapy and chemotherapy, which might give him six months, while doing nothing could mean he maybe survived just a couple of months. Alternatively, he could have a full craniotomy and then treatment after maybe a couple of months in recovery, which might allow him to live for around eight months. It was hard to hear from Mum that they had opted to go for the biopsy and not a full craniotomy, but we trusted their decision and I believe it was definitely the right one.
My brothers and I, who all live in England, flew back to Belfast, as it was suggested we spent time with Dad in case he didn’t make it through the operation or was mentally affected by the surgery.
Dad was fit and healthy otherwise, but we had to face the fact that there was no cure and treatment would just help manage his quality of life for as long as possible. It was a hard journey to follow, but Dad faced it head on, rooted in his faith and supported tirelessly by Mum.
I can’t put into words how much Dad meant and means to my family, he was a rock,
always there. He was a man of faith, a man of integrity, a loving husband to Mum, Dad to me and my brothers, Grandpa to his seven grandchildren, brother, uncle, boss and mentor, as well as a true friend to lots of people, even throughout his illness.
Dad had the biopsy on Monday 21st December and was discharged on Christmas Eve. He seemed very well post-biopsy – he was naturally a very upbeat sort of man, who would tackle things head on. He was never afraid because of his strong Christian faith.
One of my brothers spent Christmas with my parents and then my family and I went over for New Year. On New Year’s Eve it was very traumatic to hear the news that the tumour had been confirmed as a GBM4. We were very emotional and certainly didn’t feel like celebrating a new year, although having to focus also on our two young children, Juliet then five and Noah three, helped.
I was aware of brain tumours, but had never equated them to brain cancer until Dad was diagnosed. I spent an inordinate amount of time researching treatments such as electric therapy in Germany, as well as immunotherapy trials, but it was soul-destroying not to be able to find anything available to Dad no matter how hard or far we looked.
In early January, my elder brother and I accompanied Mum and Dad to see the consultant oncologist to talk about treatment and having a mask fitted for radiotherapy. Fighting for my Dad’s life, I explained that we wanted to try every avenue without being constrained by cost or structure. It was so hard to hear that all he could offer was radiotherapy and chemo. Dad was happy with this and didn’t want to have a second opinion. He felt secure in the knowledge that his treatment had been decided not by just one individual, but by a panel of experts who discuss each patient’s case in depth.
As Dad’s scar was healing well, it was suggested to bring forward the start of treatment to early to mid-January. Dad said he wanted first to go to a Christian retreat in Wales so Mum and Dad went off for what was really their last little break away together.
Back home, Dad started on the radiotherapy which was due to continue up until Easter at the end of March. He had his chemo in tablet form at home, just visiting the hospital weekly for tests and checks and mercifully didn’t experience headaches or sickness as a result. He also had his steroid dosages reviewed and changed as appropriate. It was hard to witness the changes in his ability to lift his left leg and arm, as well as in his speech which was also increasingly affected.
At Easter, we had a special weekend with all the family flying over to Belfast to be together, which Dad really appreciated, although the radiotherapy had taken its toll. He was still able to walk and thankfully we could still understand him when he spoke.
I continued to fly over to Belfast whenever I could just for the day and then during May half-term my wife Caroline and I took our children over for a couple of days. By then Dad was downstairs and imminently to be under the care of the community support team. He was struggling to walk and had a frame and various additional aids and had just got a hospital bed installed at home.
It was heartbreaking having to help Mum remove his wedding ring as his left hand had become swollen. It was numb and his left arm had been put in a sling. Apart from minor lapses of memory and difficulty speaking however, Dad was still very much with it.
On the Thursday while we were still there, Dad developed a high temperature so we phoned the oncology help line who sent an ambulance. I was in the ambulance with him as we were blue-lighted across Belfast to the Royal Victoria Hospital. He was treated quickly and transferred to Belfast City Hospital’s dedicated cancer ward. Initially we thought that this was merely an impact of the chemo and they would just need to get his temperature under control, but, devastatingly, the consultant’s opinion was that he might not survive the night.
My brother Grant was in Disneyland Paris with his family and my brother James in London so they got the first flights available over to Ireland. By 3am we were all there to say our goodbyes and let Dad know that it was ok to go, but he rallied and pulled through. They wanted to keep him in until he was stable so he stayed over the weekend, eating a bit. The hospital staff were amazing, showing such care, dignity and love, they shaved him, did his nails and hair and made him look the best he could. Because he always had loved ice cream, one of the staff even went out to buy some and Dad sat and ate it with his one-sided smile.
I flew home, but on Monday Dad heartbreakingly phoned and said goodbye and that he needed to ‘check out’ now. I got back to Belfast on Tuesday and Dad was fading rapidly and had started to drift in and out of consciousness.
My other brothers arrived on Wednesday. Dad was still responsive and could answer the odd question, but was not interested in food. He was restless when out of consciousness and was put on more pain-control medication.
Mum stayed in hospital with Dad throughout, nights included, with one of us sons taking it in turns to stay with them both during the night.
On Saturday 11th June in the morning, Dad’s pulse and breathing slowed quite rapidly and 20 minutes later he died. He was 69.
The last two weeks went very quickly and looking back we were very blessed for the first few months after his diagnosis.
Up to the very end, Dad never doubted his faith – we are all strong believers so this was a great comfort, knowing he had gone to a better place. We had a private service for him followed by a service of thanksgiving in our home church which was attended by a huge number of people. I gave a tribute, sharing many wonderful memories of my beloved Dad. It was the hardest thing I had ever done, but I wanted to do it. That day I found out how much Dad had touched people’s lives.
One such example was during the banking crisis when the Presbyterian Mutual Society (PMS) went into administration and Dad was asked to be the administrator. He believed this was the reason for his career to date and worked diligently to get the best outcome for the investors. They were eternally grateful to him.
I learnt of many other occasions when Dad had done things quietly for others, never boasting about it, or even letting anyone know.
In the last weeks of his life, I said to Dad I would do something BIG to raise money for research into brain tumours. We talked and I shared the idea of the Cotswold Way Challenge with him, an ultra-marathon consisting of running more than 100 miles in four days finishing outside Bath Abbey. This particularly resonated with Dad and me as Bath Abbey was the scene of my graduation ceremony 12 years earlier. Poignantly too, the challenge finishes on 12th June, which will be exactly a year and a day after we lost Dad.
Having only started jogging a couple of years ago, it has been a very steep learning curve. With the help of a personal coach, I am about to run my first half-marathon in March, and will then run the Brighton and Milton Keynes Marathons in April and May respectively, before going for the big one in June.
I quietly hoped to break my target of funding one day of research, but we have just passed two and it may even reach three, which will be a wonderful legacy for Dad. I have also discovered more examples of Dad’s kindness when reading messages left by donors on my Just Giving page.
The options were so limited for Dad and even if he had opted to go for the full craniotomy his prognosis was barely much longer, assuming he actually survived the surgery and wasn’t adversely affected by it either. This is why I am supporting Brain Tumour Research – it’s too late for Dad, but other families with loved ones diagnosed with brain tumours need to have the comfort that more effective treatments have been identified and ultimately a cure found for this devastating disease.
Thank you, Dad, for the time we had and all you did for our family and others. I am so proud to be your son – these 100 miles are for you.