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As we reach the end of Brain Tumour Awareness Month I thought I would take a moment to reflect upon my own experience of this terrible disease. This is the first time that I have really stopped to pause and think about the enormity of what has happened over the past year or so – I am hoping that it will be a cathartic process but anticipate that there might be a tear or two shed along the way!
Somewhat remarkably (where does the time go?), today is 11 months to the day since my Dad passed away from a Grade 4 Glioblastoma Multiforme, or GBM for short, just 2 weeks after this 70th birthday.
Dad was a wonderful man and my best friend for the first 40 years of my life. A real ‘family man’ for whom nothing was ever too much trouble. By way of just one example, during my ‘uni years,’ I mistakenly got on the wrong train back to Cardiff one Sunday evening and ended up stranded at Weston Super Mare train station! Not knowing what to do I called Mum and explained what had happened and while talking to her heard Dad in the background say, “tell him to stay where he is, I’m on my way!” Within a couple of hours, Dad arrived at the rescue, picked me up and took me to Cardiff, before setting off home and going to work for the day! Fortunately, for those that knew him, this was typical of the man he was.
In many ways, the overriding emotion on his passing was one of relief. He had been confined to his bed for the previous six months or so and required increasing levels of care and assistance during this time. Dad did not want to go into a care home or hospice and thanks exclusively to the amazing strength, love and dedication provided by Mum he was able to pass away peacefully at home. It was obviously extremely difficult watching Dad slowly being stripped of any capacity he had to live an independent life but by the end, he was just a shell of his former being and it was almost inhumane seeing somebody ‘living’ in this way. That’s why, for all of us I think, we were grateful that Dad did not have to live like this any longer.
It all started in the Autumn of 2015. The first sign that something was wrong was when Dad started drooling unknowingly from the right side of his mouth. At first it was all a bit of a laugh and the subject of much ‘mickey taking’. We were reassured (falsely it turns out) by the fact that Dad had undergone a CT scan of his brain at or around the same time and which had been reported as ‘normal’ and so we ‘knew’ that whatever was causing him to dribble like this couldn’t be anything serious.
Dad was able to cook the Christmas dinner that year but it was clearly a struggle. He had instructions written all over the place which was very unusual for Dad (cooking a roast for his family was one of his favourite pastimes!) and, while he was able to just about manage, I had to assist much more than would ordinarily have been the case (sat at the breakfast bar with a glass of wine talking about sport for a couple of hours was normally the extent of my involvement!)
Then, just after midnight on New Year’s Day, Dad sent me a text message which simply read “New Happy Year!” I immediately showed my wife the message as I was increasingly convinced by this stage that perhaps something more sinister was going on.
A few days later Dad was driving home from the supermarket when he experienced a focal seizure in the right-hand side of his face and mouth. His face and mouth were ‘twitching’ and he had found himself unable to speak for a brief period. Fortunately, Mum was with him at the time and he was able to pull over while Mum called for an ambulance. I was at a swimming lesson with my son at the time but shortly after leaving picked up a voicemail message from Dad which simply said, “Dan, it’s your Dad, I think I’m having a stroke!”
Dad was taken to the Great Western Hospital where subsequent investigations confirmed a 3cm x 4cm lesion in the parietal lobe of his brain. Mum, being a Registered Nurse, and me a medical negligence lawyer, knew that this was likely to be a terminal diagnosis and in that instant life was to change forever.
Dad was referred to the neurosurgeons at Oxford Radcliffe who indicated that it was likely to be a GBM and most probably grade 4 – a particularly aggressive form of the disease. The neurosurgeons said that they were able to operate but asked Dad whether he would be prepared to undergo an ‘awake’ procedure as they were concerned that because of the location of the tumour he may not be able to speak following the surgery and this would allow them to test his speech and language function continuously throughout the operation. He almost immediately said “no” – there was absolutely no way he could comprehend being anything other than completely unconscious – and who could blame him.
In my mind, I thought that Dad would be ‘lucky’ to see the end of 2016. As a result of the ‘day job,’ I was aware that most patients with a grade 4 GBM were dead within 12 months of their diagnosis. Of course, no-one ever wants to be on the receiving end of a cancer diagnosis, but if you are, you definitely don’t want this one.
Dad’s first operation was carried out in February 2016 and went as well as could be expected. Amazingly, he was discharged within two days of the operation and then had to wait for six weeks or so (allowing a trip to Cheltenham Gold Cup in the meantime!) before embarking upon a six week period of combined radio and chemotherapy followed by six months of chemotherapy alone. Dad tolerated the chemotherapy extremely well, so much so that he actually received an additional three months of chemotherapy on top of that initially planned.
During the next 18 months or so Dad actually enjoyed a pretty good quality of life. Unsurprisingly, I don’t think he ever came to terms with his diagnosis – there is no cure for this type of cancer and so knew he had been handed a death sentence – but life was certainly worth living and we were able to make memories that I never thought would be possible. Being able to walk my sister down the aisle at her wedding, trips to the races, weekends away, meals out, watching my son embark upon his football ‘career’ – all of the ‘normal’ things that we used to do but which we previously took for granted.
The memory that I shall probably cherish the most though is being able to go to Wembley with Dad and my son, Lewis, back in May 2018, to watch the team I played for as a child, Thatcham Town, play in the final of the FA vase. I often find myself scrolling through the photographs from this day and thinking about it now, while tinged with sadness, of course, mainly fills me with happiness. Dad absolutely doted on Lewis and for the three of us to be able to share the experience of Lewis’ first visit to Wembley is something that I shall be forever grateful for.
Unfortunately, but inevitably, the cancer came back and in early 2019 Dad underwent a second operation at Oxford Radcliffe, something that not very many GBM sufferers are afforded the opportunity of. Prior to the procedure, he was again asked he if was prepared to undergo an ‘awake’ procedure and, much to our surprise, this time responded “yes” – he was prepared to do whatever it took. I was, and remain, in awe of his bravery. I know that his decision this time was founded on the incomparable love and devotion that he felt for Mum – by this stage even if being awake during the procedure had meant being able to spend an extra day with her I think his decision would still have been “yes”.
Further chemotherapy followed but by the Autumn of that year the cancer had spread to another part of Dad’s brain and there was nothing further that could be done. His mobility and condition declined and nature was left to take its course.
Then, in March 2019, the Covid-19 pandemic took hold and we went into the first national ‘lockdown’. Singing ‘Happy Birthday’ through Dad’s bedroom window to mark his 70th birthday was not how any of us had envisaged spending his ‘last’ birthday but by this time his condition was such that giving him the bumps was never going to be on the agenda in any event! In reality, I had already said ‘goodbye’ to him both physically and metaphorically by this stage.
Of course, I am sad that he is no longer with us, telling jokes or winding us up, but more often than not, whenever I think about Dad I find myself smiling and reminiscing about the ‘good times’. I also get a huge sense of comfort from my own father/son relationship with Lewis and being able to look forward to doing all of the things with him that I did with my Dad – a sense of ‘history repeating itself’ I suppose.
One of the great things about Dad was that he was never afraid to show his emotions – he would often tell me throughout my life how proud he was of me or how much he loved me which has meant that I have always felt very secure and able to make my own decisions without interference but while knowing that I would always have his full support no matter what. I hope that this feeling is something that I am able to pass on to my own children – leaving them in no doubt as to how much they are loved and cherished.
The restrictions imposed by the pandemic mean that it has still not been possible to give Dad a proper ‘send off’ – there were only 10 of us permitted at the funeral followed by a cup of tea in Mum’s garden – but hopefully, we will be able to arrange something later in the year which will afford friends and family the opportunity to meet again and share tales and stories about the man that I was so lucky to be able to call ‘Dad’.
To find out more about brain tumours visit www.braintumourresearch.org.