Dermot’s Story

Everyone, STOP, put that fag out, put your knife and fork down, providing you're not driving or doing anything ‘risky’. Take a deep breath and hold it, hold it, keep holding it.

Well done, some of you made it a minute and 10 seconds before having to gasp for air. That breath was good I bet, and the one after it is satisfying. Well, every morning I and almost all my fellow warriors feel like that. We are here, we are breathing. We are the ones that for now have overcome brain tumour treatment. Some of us have ended up with impairments, some with death, and it’s not only us, it’s our families that feel the pain.

I was told “You have 2 years of breathing left if you’re lucky”. That was six years ago.
My name is Dermot, I am in my early 60’s, medically retired, and this short story is my journey. Hope you enjoy it.

It’s Oct 2017, I am a reasonably good IT project manager, working as a contractor. My role at that moment was software focused, my team is great but dispersed round the world. It’s a Thursday morning and I am out in our garden room, starting a Zoom meeting. One of the seven meeting participants join, his location somewhere just outside Sydney, like me in his office shed. The others join, and our meeting commences. It’s about midway through the project, so it’s all heavy detail and concentration is paramount, with lots of minute taking. The meeting goes on for about 4 hours well into the Australian evening before ending and I feel fine.

I get up for a pee, exit the office, head towards the house, but never make it. No, I didn’t wet my trousers, instead I woke up in St Richards Hospital Chichester. Being scanned, tested and everything between. I was disoriented but okay, and with my wife was told I had what looked like a tumour in my head. Released after further tests, I was driven home and straight to bed. Got progressively worse, becoming very discombobulated. A friend who is a doctor visited, insisted my wife call the local surgery and demand a home visit. This was done and not much later I was back in hospital, having got a ride in an ambulance under Blues and twos (the blue lights and two-tone siren). More head scans.

I was still with it and understood this was serious. My brother-in-law Richard had also come down to help my wife, Sarah. The doctors had already contacted the local Neurological Centre of excellence department, at Southampton hospital. They could see the scans and test results, and mentioned they would see me if I could get there under my own initiative. I said yes immediately, was wheeled out in a wheelchair and man handled by Richard into his car. We finally got to the hospital, about 5pm having discussed all types of scenarios, good and bad. First thing I had to do was walk in on my own. I was wheel-chaired to the front entrance, where under close supervision by Richard and Sarah, I walked to the Neurology department. I was called into the consultant's room almost immediately and asked loads of questions, but no more tests. I did mention my 11-year-old daughter, and that I was determined to see her graduate. Finally advised that they would do a biopsy first thing Monday. This meant local anaesthetic, a hole drilled into my head, and a sample taken from the tumour for analysis. We departed having been told to be back Sunday evening.

I can’t recall that weekend at all, next proper memory was Monday morning in hospital going for a final MRI so they could work out where to operate. I think they provided a slight anaesthetic, as I woke up back in my private room with my lovely wife, brother-in law and two surgeons, around me. Their first words to me were that things had progressed far worse than expected over the weekend and that the tumour had grown. He showed us a scan of my brain which meant nothing to me. To cut this short, rather than a biopsy they would do a full Excision if they could. This carried bigger risks, and they gave me my life expectancies in percentages.

If I did nothing and with the tumour's aggressive growth, I would have a week, possibly two. So, I signed my life away; I asked that if things got worse or something went wrong when they were in my head, unless there was a good chance of survival, I requested a DNR (Do not resuscitate).

I insisted on walking to the theatre. For brain surgery they don’t have a huge, big, theatre, rather a small well-lit room. Again, I reiterated the DNR request and was put to sleep.

Early that evening I came round in my hospital room. Things appeared to have gone well, or put it this way, my wife saw the two surgeons’ high five-ing each other. Although late, they were still there and came to update us. Asked loads of silly questions, what day is it?, When is your birthday, where do you live, what was your first school etc.
Once completed and having successfully answered all, they explained that things had gone well. They got 90+% of the tumour out. The tumour in mass was the same size as a small rubric cube, and the 10% was too risky as it was near life systems. They said things were looking good and would be back tomorrow and ushered my wife out as well. I did sleep well that night. Up early, I managed to sit on the side of the bed, then stand, and finally with tubes and bottles in tow, I managed to get to the toilet. This caused a bit of nurse panic! Back in bed I got fed.

Later one of the Doctors returned, inspected their handy-work and said I would be monitored for the next 3 or 4 days. Then they were told of my walk to the toilet. Smiling with pride, they suggested the nurses remove the various catheters etc that afternoon, but insisted I needed to drink as much as possible. I asked for a beer; they rephrased their earlier comment suggesting I go with H2O only. Had various visitors and all was good, with the big plus I felt almost normal again, all be it with one big black eye and what appeared to be staples, loads of them holding my head together.

Again, had a good night sleep, but this was where my first cancer side effect started. I woke up at about 4 am and still do 5 years on. Being awake I decided to stretch my legs; the hospital seemed entirely asleep. As the saying goes, I walked the corridors. Did some stairs and finally found the kitchen. Through a Perspex window, I could see and smell, pain aux raisins. I negotiated with the chef and managed to acquire and eat one. Whilst searching for my way back, a nurse took pity on me and brought me back to the ward, who were none the wiser. That day I had a further scan; after being checked over by the neurosurgeon, I was advised later by the nurses that I was to be discharged! This I understood was unheard of after major brain surgery; normally it was 4 days plus. My wife was pleasantly surprised to get a call from me, asking her to collect me. On her arrival I was in the Physio ward along with my new bright red stroller.

This was to be the start of what I call my new normal. Day one at home left me feeling very fatigued, cognitively slightly impaired and feeling a little apprehensive. I knew I had the big “C” but not the type or long-term prognosis. True to their word, the physio staff had organised one of their departments to do a home visit and installed handrails, provided a commode, wheelchair and other bits to help in my recovery. Over the next two weeks my stroller proved to be the best device ever.

Drugs were numerous, the big one being Dexamethasone, which provides relief for inflamed areas of the body. In my case inflammation and swelling, from both the cancer and the surgery. This and paracetamol were to become my go to drugs. Luckily in my case, I was generally fairly pain free excluding repeated pounding headaches. But life was good.
I also discovered early in the process that my cognitive power was a bit weird. For example, watching TV I could sit there watching an episode of something like the X-Files, but if I had to concentrate for more than an hour, I wouldn’t know what I was watching. Still living with this, but it’s no longer a problem and easy to live with.

With time on my hand, no prognosis expected for 10 days whilst the lab analysed the removed tumour, I started googling. Very quickly, I discovered this was long term or very short if the cancer was still active. Once you get your head around the fact that death could be imminent or that this condition would be long term, I realised in the medium term I would not be working. I resigned my contract and started chasing my final salary pensions.

Richard, Sarah and I were early for the next appointment but were ushered straight through. The neuro consultant didn’t beat around the bush and went straight to the point. The lab had confirmed their diagnosis: a Glioblastoma (GBM), also referred to as a grade IV astrocytoma, a fast-growing and aggressive brain tumour. It invades the nearby brain tissue but generally does not spread to distant organs. Long term, the prospect was not good! The average glioblastoma survival time is 12-18 months– only 25% of patients survive more than one year, and only 5% of patients survive more than five years. The latter, I am pleased to confirm is where I am! He then looked at my surgery wound, was satisfied and asked me to contact my local surgery to get the staples removed, and he would contact oncology about follow up treatment.

I left feeling very apprehensive, slightly worried, but quite good.

It’s been just over 10 days now and on the outside and most of the inside I am fine. But, despite the love and care from my wife and daughter, I feel alone in the new normal. There are not many people you can talk to on a one-to-one basis. My puppy became my confidant and buddy; he also forced me to get out of the house for walks, which were slowly getting longer, and this is where my stroller proved its worth. I was getting dizzy spells of short duration. Many a time I recall sitting on the stroller seat on the side of the road stroking the puppy, whilst waiting for it to pass. Was also advised by the DVLA that my driver’s license was suspended for two years minimum; that was a shock.

I received a letter from Oncology at Cosham’s Queen Ann hospital for the start of my secondary treatment. Arrived for the appointment being fairly unprepared, other than a little Googling. Feeling apprehensive, I sat down with my wife, the senior oncology nurse and the oncology consultant. My treatment plan was to consist of Chemo in pill format and almost daily Radio therapy for 6 weeks, starting with a further MRI to provide a base line.

Although worried I soon discovered all this was relatively pain free, the worst being the insertion of the cannula installed before MRI’s.

Dermot