David John's story
On reflection, I made many mistakes in the early days of my illness. There are many people who would say these mistakes were typical of many men, and they may be right!
My first mistake was to ignore the strange and bizarre symptoms I was experiencing and delay a visit to the Doctor for over 6 months. This, I’m told, is like many men, avoiding the Doctor in fear of wasting the GP’s time or even, God forbid, being told there was something so wrong that was more serious than a bit of man flu.
My symptoms, which all presented at the same time, were a strange mixture of an awful taste in my throat, (a bit like burnt electricity, not that I can really make that assumption having never tasted burnt electricity), dizziness for a few seconds and, as time went on, my voice changing into a deep whispering witch mode for a brief period.
However it was only one morning when on the telephone, I lost the power of speech and the co-ordination of my right arm that I decided it was time to visit the Doctor to see if this self-diagnosed issue of wind and indigestion could be sorted out with a brief course of anti-biotics.
At this point it would appear my life was saved! My GP wanted to make sure that nothing too serious was wrong and arranged a Cat Scan the very next day. By the end of the week my GP left a message on my answering machine.
As it was Friday, I was in the local pub with friends talking football, the price of a pint and the great joys of being married and so I phoned my GP back on the Saturday morning. My GP was at home but he asked to see me that morning and would I bring my partner with me and not to drive the car. At this point I had an idea it was not an ingrowing toenail that had been discovered.
The diagnosis of Brain Tumour had been made and Dr Pope, the kindest most caring man I have ever met, attempted to answer a barrage of questions, what was it, why was it there, what would/could happen, what are the treatments and, oddly; could I still run the London Marathon which was now only 12 days away.
The answer to that last question was a big No from all the medical people I spoke to, as it appeared it was likely the tumour now the size “a golf ball” would explode and, at the same time, my demise would occur, but this didn’t stop me asking if I could still run the Marathon. It was 4 months of hard work and training and not giving up easily I again asked my local a local Consultant who, looking at my wife, asked her; “Is he crazy?”
My second mistake was not to tell my family or friends of any of these developments. This just left me with my wife as support as we headed into the unknown. It was a lonely week or so waiting for appointments and decisions, and I still kick myself for not sharing the news of my illness with others. I thought my elderly mother in the UK should know first but felt it could not be done over the phone and so was waiting to travel to Sussex to break the news to her and then to many sisters and brother.
At the same time I was informed that I was no longer able to drive and medication was prescribed to prevent any more epileptic fits. A clear year of no fits was now required before I would be allowed to drive my car again. This was a real blow as it’s just not feasible to get buses from Gorey to B&Q and back carrying a length of 2 by 4.
Weeks of appointments then followed with various visits to the National Neurological Hospital in London resulting in surgery and an unsuccessful attempt to remove the tumour. At the same time swabs for biopsies were taken to test for cancer. I was discharged to my Mother’s home a few days later with steel stud staples in my partly shaven head, which caught the eye of many a tourist at London Victoria Rail Station.
So, in vaguely remembered order, the following is a brief list of what happened next:
Back to National Neurological hospital to be told that the biopsy was clear of cancer but they were still unhappy about a dark area of the tumour which they had not taken a sample from. So good news and bad news, plenty to worry about!
Next, 3 day visits from Jersey to Southampton for a face mask to be cast before 6 weeks of Radiotherapy treatment could commence.
Then just prior to treatment I was told by my consultant that I would lose all my hair and that due to my age it would not regrow, ………………… oh happy days!
And then, I was informed that my prescribed medication to prevent the epileptic fits would have to be taken twice a day for the rest of my days.
Then I made another big mistake! I choose to stay independently in a Hotel in Southampton for 6 weeks. At the time I was still recovering from the brain surgery and slightly depressed with it all. I felt I wanted to be alone, with just Hilary visiting at weekends. This was madness I only had her support at the weekends and daily on the phone but that was it.
I soon became a recluse with only a daily visit out to the hospital for my 4 minute treatment and a miserable walk around Southampton shopping centre before returning to the hotel room. I met no one from Jersey, somehow missed out on any support networks available, and saw no professional medical worker apart from my consultant each Friday morning for a few minutes, (I fib, I was sent to the Hair Loss clinic at the hospital when my hair fell out, however I declined the offer of a wig, although I did look fetching in a few of them, if I say so myself!)
The 6 weeks dragged by. I was ill and for 15 days and could not eat or drink, (soon rectified by additional medication). I was not up to travelling back to Jersey at the weekends and I looked forward to my partners’ weekly visits. She was my support, a shoulder to cry on and the lady who brought me fresh laundry.
Recovery from the radiotherapy was simple; it mainly consisted of several months of sleep and rest.
I’m now fighting fit, having annual MRIs to keep an eye on the tumour and, my hair grew back!
So if it helps, my advice to anyone is:
• Never hold back from seeing the Doctor when your body starts to act in strange ways.
• Secondly, if you are told you have a battle on your hands share this with family and friends, you could not wish for a greater support network.
• And thirdly don’t be dumb like me! If you’re in Southampton for 6 weeks, mix with others; get to know the professionals and when you return to Jersey suss out the local support services.