In Our Hearts Stories
Less than 20% of those diagnosed with a brain tumour survive beyond five years
“One of the strangest quirks that Sandy developed was the compulsion to draw or write on anything with anything. He would use whatever was to hand - food, lotions, you name it - and draw on hospital tables, windows and walls. A friend once brought in a red marker and, by the end of the visit, there were two grown men looking like they had been involved in a crime scene.”
Here is Sandy’s story, as told by his widow, Theresa…
It all makes sense with hindsight. My husband, Sandy, had always been a reserved, well-read and very intelligent man. Before his brain tumour diagnosis, I started noticing some changes in him that were completely out of character.
As a commercial pilot, he was usually very methodical and calm. Sandy approached his great passions, aeroplanes and motorbikes, with care and calculation. Safety, particularly of his air passengers, was incredibly important to him and he never compromised on that at any stage. He was a Training Captain, so safety management was a large part of his role. He had in his younger days been one to take risks, but had mellowed with age. Although he had broken his collar bone twice and still loved riding his many motorbikes, now he would spend hours in his sheds with his bikes re-building them, often from almost nothing. He loved them all: trials bikes, work bikes, high performance “fast bikes”.
It began with little things really; moments in time that you wouldn’t think much of, and certainly wouldn’t connect to mean cancer. When he first started getting ill, Sandy would go missing for hours and I would not know where he was. There was a time when his dad was ill in hospital and we were due to go on holiday the next day. Sandy disappeared, not leaving a note, and returned late at night. This was very unusual for him.
He was incredibly tired but still worked excessively; I remember him saying he was feeling a bit “dopey” but we put it down to needing a break. Sandy and I had always enjoyed active holidays and sharing new and different experiences. We travelled the world together: diving in Costa Rica and Zanzibar; rafting in Nepal; we loved an adventure. Now, he avoided down time. It was like he was a hamster in a wheel, frantically running in a circle.
Sandy’s appetite waned significantly and he became vegetarian, like me. As a Scot, not eating meat was like chopping his arm off, yet, suddenly, he decided he liked brussels sprouts and would eat cheese when he normally hated it. I also noticed changes in his breathing at night, whilst he was asleep, he would appear not to breathe for long periods of time. One night he lay across the whole of the bed, oblivious that I almost falling off the edge. I now know this was an effect of the tumour and he was losing awareness of his left side.
He became quite obsessed with song lyrics, interrogating the meaning of particular words and phrases. Worryingly, Sandy was even hearing things. One day, Sandy was riding to work on his new, very powerful, motorbike when he heard a voice warning him that death was near. A visit to a motorbike show, eight weeks before he died, ended up with him having wills written for both of us – I wasn’t even there! With hindsight, he seemed increasingly focused on his own mortality. Changes happened steadily over months, but there’s no way of knowing what was the brain tumour, or simply food poisoning or a normal headache. I had no idea of the significance of these subtle changes.
Days prior to his diagnosis, in September 2014, Sandy telephoned from his hotel during a work trip to say his co-pilot felt something wasn’t quite right and didn’t think he should fly the plane home. We agreed he should get checked out at the local hospital that night, to be on the safe side. The doctor felt it wasn’t anything serious and could find nothing obviously wrong. Sandy was flown back, as a passenger, but was later found by a colleague trying to cross the road, rather confused and disorientated. Still in his pilot’s uniform, he was taxied from Edinburgh airport straight to Perth Royal Infirmary, near to where we lived. He was fully examined; being told he probably had a virus.
I met Sandy in A & E with my daughter, we intuitively knew something was wrong, especially when he walked into a wall while still in the hospital. We took him home to rest and recover, but he experienced sickness and headaches over the next 24 hours. I kept an eye on him and by the following day he was very cold and couldn't eat. He appeared to be really confused and could not use his iPad. I rang a friend, a doctor, for reassurance that I was right to be worried. Sandy was saying he wanted to stay in bed, like a naughty child, so I had to dress him and virtually carry him out the door. I trusted my nurse’s instincts and this time there was no way I was taking him home. We went back to A & E.
Sandy was admitted, but again there were no alarming signs or symptoms, just one “very small subtle sign on examination”, the junior doctor told us. He had a CT scan, and we were waiting for a lumbar puncture. The doctor asked us to come into the office to discuss the CT results. This was the moment I knew our lives were set to change. I could see a pot of tea on the table, next to the CT report, which looked 2 pages long! The bottom was just about to drop out of our world.
We then heard the news no one ever wants to hear: a 6cm lesion on his brain with a 11mm midline shift. We looked at our “nemesis” on the CT and, even to the untrained eye, it looked awful. Sandy said flatly “this is it”; he seemed to know that this was going to end his life. I was devastated, feeling helpless and frightened, but trying to believe there was a way of treating this. So many things go through your mind.
Sandy was given Dexamethasone which helped him feel better and we were transferred to Dundee for possible neurosurgery. At 2am he rang me from his mobile phone confused, he was quoting a Genesis song, trying to tell me he had “marbles on his grave”. He was quite distressed and deteriorating relatively quickly, finding simple tasks like turning the shower on very difficult. He also had no appetite.
The hospital continued with tests over the next three days, including an MRI and a brain biopsy. Sandy was now in the High Dependency Unit opposite a cyclist with a bad head injury and very low heart rate. Sandy decided he would try and make his heart rate even lower than the cyclist’s, setting off all the alarms on the monitors throughout the night. He was also able to recite back the conversations that the nursing staff had been having overnight! His hearing and memory were incredibly acute.
It was obvious that he was getting worse. Following the tests came the terrible news that Sandy’s tumour was a grade four glioblastoma multiforme, notoriously aggressive and, due to its location, inoperable. Its position in the right parietal lobe had resulted in his personality changes, bringing out things that people would normally unconsciously filter. The tumour was aggressive, shaped like an octopus with a 6cm body and spreading tentacles. Radiotherapy was possibly an option but we needed to wait 10 more days for the brain biopsy report.
Sandy’s continued personality and behaviour changes were becoming more challenging daily. He was anxious, talkative, forgetful, quite obsessive and even childlike at times. He would become lost and disorientated very easily and could not be left alone for very long. Last week he was a commercial pilot, highly valued and well respected. So much had changed, so fast. It upset me to see him both behaving, and being treated, differently. As a nurse, I understand that you treat what you see and I suppose what was really upsetting me was to see those drastic and rapid changes in my husband.
I knew it was the brain tumour, making its presence known and having very powerful effects on Sandy. He couldn’t make decisions or speak about anything that mattered. We had been married almost 30 years and his personality was changing, replacing the Sandy I knew with someone who was quite different. I remember needing him to sign a document, it was impossible – he could draw a picture of a motorbike or church, but not sign his name! I had lost my confidant.
One of the strangest quirks that Sandy developed was the compulsion to draw or write on anything with anything. He would use whatever was to hand - food, lotions, you name it - and draw on hospital tables, windows and walls. A friend once brought in a red marker and, by the end of the visit, there were two grown men looking like they had been involved in a crime scene. Red streaks covered them and even the bed sheets. Another day I left him with a banana, to come back to him writing on the nicely-cleaned windows with it. These were some of our funnier moments. Writing implements were confiscated and banned, only allowing bananas under supervision!
Sandy became very talkative, the polar opposite of my previously quiet and often reserved husband. He would talk incessantly about anything to anyone, often not making much sense. This even stopped him eating, drinking and sleeping normally. I had to warn his visitors that he wasn’t the person he had been. Sandy was easily tired which would make him anxious, confused and upset. Some days visitors were just too much for him. Telling his family and friends about his diagnosis was one of the hardest things I have ever had to do. Sandy was very popular, with friends at the local flying clubs, in the aviation world and at several motorbike clubs. They came to see him in droves
We did go home for a short period following diagnosis. It was the day of the Scottish Referendum in September 2014. We voted as it was so very important to us both. Sandy had a major crisis outside the polling station and ended up voting from the car, but we did it! The person we brought home from hospital was almost unrecognisable from the man I married.
I was so grateful to have our daughter Katherine and her husband Sean for support throughout and especially when he was home. We often felt helpless, with what felt like no support or guidance. Sandy had always been interested in the idea of a left brain and a right brain performing different functions, he would now describe himself as having three brains, his third brain causing all the problems, always working overtime. Sandy became very obsessive at home writing instructions for us all over the house. Post-it notes turned up everywhere telling us what we should do and say: on the phone; in the shower; and so it went on. Sandy became very sensitive to any noise and we were not allowed to have the television or radio on. He even stopped listening to music, previously one of his passions.
He was not sleeping, and would instead wander around the house at night looking for anything to “write” with, even using torches to trace patterns of light on the wall. One night I found him at 4am, freezing cold in the front room, having ripped up a tissue box and written all over it. I have kept piles of scrap books and still, several years later, I come across notes written in the back of books and other unexpected places. Some of his writings and drawings are about his tumour, or his feelings. Some things make no sense.
We were not coping, but tried to struggle on. Being sent home with very little support was just a nightmare. We were all so worried that he would hurt himself, wander off and get lost. Sandy deteriorated rapidly four days after being discharged from hospital. He became photophobic, needing sunglasses to go outside, had lost the sight in his left eye for the second time and was now losing the function on his left side. He was unable to walk and vomited all over me as we returned to the hospital. I thought this was the day I was going to lose him and I was nowhere near ready for that.
Another MRI told us that his tumour had grown with a larger midline shift. It had only been two weeks since diagnosis. More steroids helped but when we finally received the biopsy report, it confirmed that there was nothing they could do. It was inoperable and the location of the tumour, combined with his erratic behaviour, (some of the worst they had ever seen and very atypical) meant that radiotherapy wasn’t an option either.
I remember hearing the healthcare professionals say what a difficult meeting, and decision, it had been for them. I couldn’t believe it, they had nothing to offer him, no treatments, yet only a fortnight had passed since that day in the little room with the teapot and long report. How can there be NO options for brain tumour patients like Sandy? We were referred to palliative care, and commenced anti-psychotic drugs to try and moderate his behaviour. We were transferred to the hospice by ambulance where Sandy, much to the entertainment of the ambulance crew, used my hand as a microphone, making passenger announcements for the whole thirty-minute journey. By this point, Sandy was hallucinating both visually and aurally; he would see people in his room and hear things, usually around death and dying. Amazingly he still appeared to be happy, despite losing his independence. He was now in a wheelchair, paralysed down one side and blind in one eye, with no control over his bodily functions. I felt that my Sandy was still “in there” but you did have to know him and look for it.
Sandy was a great hit with the staff in the hospice and kept them entertained, while also working them hard. There was never a dull moment. He fell out of chairs, broke the bed and the clock, somehow managing to keep getting himself out of bed despite the precautions we took. Because of the tumour Sandy no longer had awareness of his left side. It just didn’t exist for him. On one occasion, clearly conscious of his previous life as a pilot, he decided to use my shower cream on the windows to deliver a crew briefing. He was obsessed with identifying people he met and giving them names he could remember, helping him retain his short-term memory. He would use his work pass to “scan” them. Dr Kelly became “Dr Smelly” which didn’t go down too well. It was, however, something to make us smile.
Sandy died on 21st October 2014, just five weeks after his diagnosis. His funeral was a major event. We all wanted to remember the man he had been: popular, funny, caring, hardworking, a much-loved friend, brother, dad and husband. His coffin travelled on a motorbike sidecar with a 30-motorbike escort. Friends at the local flying club organised a fly past for the funeral and an air display for the wake. Sandy has also been recognised by his employers and we recently attended a dinner to present The Spirit of Sandy award. In October 2017, they are planning to name one of the aircraft fleet after him, with our daughter and I attending the event.
There have been many moments of pure shock and horror throughout this experience. The effects of the brain tumour on my husband’s personality were completely unexpected and very hard to accept. We lost “him” very soon after the diagnosis. The information and support we received was, at times, was very limited. We knew nothing about brain tumours, but our journey has taught us many things. On a positive note, we did meet some amazing, caring and exemplary doctors, nurses and allied healthcare professionals. Their care and compassion made our journey so much easier. Yet charities seem to be doing much of the work, both helping families and searching for treatments, even though brain tumours are so devastating. This needs to change. Katherine, Sean and I are passionate about spreading the word and keeping Sandy’s memory alive by sharing his story. It perhaps makes some sense of his early death and, I sincerely hope, helps others.
Brain tumours kill more children and adults under the age of 40 than any other cancer, yet just 1% of the national spend on cancer research has been allocated to this devastating disease.
If you have been inspired by Sandy’s story, you may like to make a donation via www.braintumourresearch.org/donation/donate-now or leave a gift in your will via https://www.braintumourresearch.org/legacy
Together we will find a cure.
The views or opinions expressed within are not necessarily those of Brain Tumour Research. This content has been shared for information purposes only. Brain Tumour Research does not recommend or endorse any particular treatment. If you have or suspect you may have a health problem, you should consult your doctor or other suitably qualified medical professional. Our member charity brainstrust can provide additional information on treatment options.