Surviving Brain Cancer in a Precarious Nation

Part 9: The Race to Wise Up

When I had been contacted by Clatterbridge Cancer Centre the day before the official brain cancer diagnosis, I was also told that I would need to meet an oncologist and that day happened to fall directly after the official diagnosis at Walton.
So far be it from having time to take it all in, everything was still busy the next morning.

My Father took me early so that we could go somewhere nicer before the meeting at Walton. We ended up at New Brighton where he went to go get himself breakfast. I was still in too much shock to eat anything beyond a tiny pack of dried fruit.

Walking into the shops I got a strange look from someone working there, probably because I looked so terrible and depressed with a scar across my shaven head. I thought to myself if it was a common sight in this part of the country given how big these cancer centres are on the Wirral and in Liverpool.

When we left for Walton I wondered if I would ever see New Brighton again under better circumstances and be able to enjoy the scenery instead of walking around like a marked man. It had always been a location I wanted to go to on a sunnier day because it features in one of my favourite songs music video "It's a Wonderful Life" by Black.

Once at Walton I had to be dropped off to the waiting area on my own while my father found a place to park which I imagine to many people there feels as difficult as brain surgery itself.

Perhaps some irrational OCD or superstition prompted me not to sit anywhere near the place I was sitting the day before when I received the awful news. After a while, my father came through to the waiting area and with perfect timing we were called into a room past where I had initially got to be assessed fit for surgery.

This is where I met my Oncologist Dr Shenoy. I had read up on him the night before that he had a wealth of experience in oncology going back to 1990.

From the get-go, he was much more friendly and personable than my experience with the surgeons. This is not a dig at Surgeons because I believe to do their job, you have to be a very special kind of tough and confidence as they are paid to save lives with intricate brain surgery.

The first thing Dr Shenoy asked me is if I understood what my diagnosis was. I said “An Anaplastic Astrocytoma and I understand it’s very hard to survive”. This is about as far as I got before I totally broke down again. Whenever I did break down it would be because I was thinking about my fiancee and how I didn't want her to lose me.

It was explained to me the schedule of the treatment and what possible side effects it could cause such as glaucoma and blindness. For most of this meeting, it was mainly my father asking the questions because I was just in such an emotional state trying to explain my history of anxiety and how it is now overwhelming.

It was clear to Dr Shenoy that I was in a terrible mental state and gave a worrying nod to one of the other nurses in the room and suggested that I had counselling booked at Clatterbridge before treatment. There was time for this because I would need to wait a few weeks before radiotherapy for the surgery swelling to settle first.

To calm me down a little he asked me some normal questions like my general interests and what I did for work. He seemed quite impressed when I explained to him I had just finished a 3d model of an animal and plant cell at work to be sent to Reading University which he seemed very interested in.

Before I could leave, I was sent to meet my specialist nurse called Helen. She was the best person I had met since the nurses at Walton after surgery because she could tell I was in the worst position mentally to face a death sentence and no one had given me any hope that I could beat it.

She was the first person to give me hope because she said, although I had been told what I have is very aggressive, there are a small number of people that do beat it and go on to live another 30 years. I didn’t care how small the percentage was. I just needed to hear it was possible.

Once out of Walton my adrenaline was all over the place after crying and I ended up puking before I got to my Fathers car. I could feel that horrible gushing sound in my head again, with every wretch. Once on the way home, I started to think about what it would take to be one of the few to beat it.

This was when I knew I had a very limited amount of time to wise up and get some answers. When I was home I started to search online for long-term brain cancer survivors. Prior to this, I had just been reading about statistics on it which were generally all bad.

The first site I found was called virtualtrials.com which had a list of different types of brain cancer and a number of survivor stories in each. I was surprised to see there were so many of the ones that had the highest grade being a Grade 4 Glioblastoma.

I noticed a lot of their stories involved using off-label chemo drugs such as Tamoxifen. When I looked into this drug I found out it wasn’t available to me and this seemed to be the problem with a lot of off-label approaches because patient’s success depends on how willing their doctor is to prescribe something off-label.

When I was reading the survivor stories of those who had what I had, I was delighted just to see people making it beyond 8 years. I ended up emailing every survivor on the website to try and get as much help as possible to be as successful as them.

Unfortunately, none of them got back to me, probably because the website was not working so well at the time or they were too busy helping others.

I then found a website of someone diagnosed with a grade 4 GBM about half a year before I was called David Bolton. When reading his story it seemed he had been dealing with brain tumours for much longer as originally he had a grade 2 that had turned into a grade 4 just 6 months after his initial diagnosis.

What impressed me about him was how he was clearly a fighter that would never give up no matter how hard things got. By now he had already outlived his 3-month prognosis so it seemed like he was doing something right.

I really wanted to contact him to explain my situation and he was very swift to reply. I explained how I had a history of anxiety so coming to terms with the diagnosis was just giving me a breakdown.

He then gave me a much-needed reality check by explaining “Look I know it’s tough, believe me, I’ve had breakdowns and I have the highest grade, but if I dwelled on that it would beat me! You have to think positive and not get upset otherwise, as brutal as it sounds, it will beat you”.

This was the first time since my Fathers pep talk about not dying that I felt I was given a healthy fear to snap myself out of feeling sorry for myself. Dave went on to explain a scientific reason for avoiding crying which is that it can activate stress hormones like cortisol and these hormones can be used by cancer cells to progress.

Just reading that was like a switch were the tears stopped and gave me some fire in my belly to continue learning. He explained to me that he was on a trial for GBM patients to see how well patients tolerate chemotherapy while being on a ketogenic diet. This was the first time I had heard about this diet.

I turned to Youtube to see if there was anything about the diet there. Initially, I had stayed clear of Youtube because I knew it was full of what can go wrong for people with cancer and I needed to stay positive, not accepting a death sentence.

I found some luck after persisting my search and found a video called Tackling Brain Cancer with Ketogenic Presenting Andrew Scarborough. This video changed everything for me because this video was about how Andrew had used the ketogenic diet to manage the same type of tumour I had been diagnosed with.

I was quite eager to contact him to find out more and just like Dave he was kind enough to respond and provide some useful advice. In the video, he was being interviewed by 2 advocates of ketogenesis who were finding out how he had been successful in using it to manage his brain cancer.

It seemed he had a much more scary diagnosis than mine in that his diagnosis came off the back of a brain haemorrhage rather than a 25-minute nocturnal seizure like mine. Unlike Dave, Andrew was not on a trial for the diet or using chemotherapy anymore but had instead learnt about the diet sometime before his diagnosis thanks to studying nutrition in London.

He told me of some very difficult times when he was first given the standard of care. Unlike my oncology team, his had sent him down the Royal Marsden route which is a hospital that seems to heavily favour chemotherapy and radiotherapy of anything else.

I was curious why he had been given both chemo and radio but I was only going to get radiotherapy with no chemo. My understanding at the time was that chemotherapy was an extremely dangerous toxic treatment that’s successes was mostly dependant on what type of cancer you have. I didn’t know much about radiotherapy so I naively considered it to be less problematic.

Andrew explained to me that if he had a choice again, he wouldn’t have radiotherapy because of the long-term side effects which can be life-changing. He then told me a bit about Hyperbaric Oxygen Therapy (HBOT) which is said to do the same as radiotherapy by putting cancer cells under oxidative stress but without the deadly radiation. Sadly it wasn't available in my area because the HBOT centre in Chester only accepts patients with MS.

After a few days of learning about the ketogenic diet I knew I only had a few weeks left until my first treatment date but I just still didn’t have the guts to reject radiotherapy for alternatives and my loved ones around me which knew even less about alternatives, were very worried about me doing anything other than what the doctors suggested.

I explained to everyone that I would slowly get into this diet the more I learn about it but I would still do the radiotherapy. Back on YouTube, I remembered that I had seen a daily vlog by a brain cancer patient years earlier called Charles Trippy on a channel called “The Internet Killed Television”. When I found it again I was given even more hope because he was in remission and had a grade 3.

Looking back through his massive amount of videos I was able to see how he dealt with side effects of treatment and keeping positive by embracing the internet in a kind of daily video diary format.

This inspired me to start doing my own. The first one was incredibly difficult because I had never been on TV let alone shown myself online like this before, talking openly about myself or what I’m going through. It was like self-counselling which although is therapeutic, made me break down when I was explaining how worried I am more for my fiancée losing me than what I was personally facing.

My best friend Dave Houghton came to visit me and help me move all the stuff out of my old apartment in Llandudno as it was clear I would have to move into my parent's house given it was closer to treatment and I was unsure what would happen with my job. I also hated the idea of living alone now just in case something else happened to me with seizures.

Dave was brilliant throughout the whole initial diagnosis. He had come to visit after I first got discharged from the hospital in Chester and was back to help me with the physically demanding task of clearing out my apartment while I was still feeling rough from the surgery.

The landlord I had was a careless old toff who just wanted his money so he only gave me a week to get my stuff out of there once I told him I had brain cancer and would need to leave.

Dave helped me document it all with my new daily vlogging. Because there was so much stuff and 4 flights of stairs to deal with, we eventually needed my father, fiancée and her father help to get the place returned to the market. I was incredibly lucky to have them all with me through this process.

Because I was still suffering from fatigue so much from surgery, I felt like a spare wheel most of the time as I could barely carry anything. I also felt sick and sad that I was losing my apartment. Towards the end, all I could do was lay on the floor in my old room with no bed and just kept telling myself over and over that I need to pick myself up and never let the cancer beat me, no matter how much independence it would take away from me.

To Be Continued…