Surviving Brain Cancer in a Precarious World
Part 10: The Fightback Starts
My first experience at Clatterbridge Cancer Centre was to see the phycologist as recommended by my oncologist. My mother and I had to get up quite early that morning to be ready for the ambulance taxi service which had trouble finding the tiny hamlet where my Parents house was located.
I remember when it arrived getting into this minivan thinking if it would be difficult meeting other patients along the way when therapy was underway. I was very thankful for this service because when treatment did start I would be relying on them almost every weekday to get to Clatterbridge and back home.
It felt surreal on the long journey there, as long car journeys often are as a passenger, there is a lot of time to think. I thought to myself I should try my best to meditate when I had inevitable long moments of waiting between various appointments.
The vlog on youtube was also there to keep me occupied when I had long moments waiting. The first vlog had quite a large response to messages of support I was even contacted by a girl from my past where my mental health issues had killed any chance of a relationship and we had ended up parting on bad terms, was simply wishing me well and encouraging me to fight the disease. I was too overwhelmed to really respond then so simply liked the post and moved on.
Once at the hospital, I was told to go to the Papillion suite and sign in for my appointment. I could feel my heart pounding in my chest knowing because being here for the first time made everything even more real. The appointment itself was pretty much like Part 4 to 7 where I basically had to give my life story and focus on parts that were difficult for me.
As my Mother was there it was also hard for her to hear some stuff she had not known about such as the bullying I had experienced off my own sister trying to impress her friends when I started at college.
After the appointment, the mental health specialist took me for a short tour around the hospital.
This was actually the hardest part of the day for me because it was so frightening seeing a cancer hospital for the very first time and knowing that I was there because I had cancer too. The smells of a hospital environment can also knock you sick especially if you have anxiety.
The reality of it all was made worse when my Mother and I were left to sit in the waiting area for a different ambulance taxi home. The wait was incredibly long at almost 3 hours. We chatted for a while about the appointment and tried to log onto the wifi to let people know how it went.
As time went on it became very difficult to deal with my surroundings because down the hall I could see where people were going to get radiotherapy and you could tell who the patients were given the printing on their faces from the mask used to keep them in place. There was also the difficulty of seeing other patients clearly having chemotherapy who looked very ill.
What broke my heart the most was seeing a little girl who was bald at the front of her head, she couldn’t have been more than 4 and she was struggling to eat her food that her poor worried parents were feeding her. It made me think about how lucky I was that I had life experience before my diagnosis. I hated seeing kids affected by it so young.
It made me think about all those years I had been donating to cancer research UK and how it awful it was that kids are still at risk of this awful disease.
Because I was mindful of how I needed to adapt to the ketogenic diet I ended up having to fast the whole time I was there because there was absolutely no keto compliant food available in the entire hospital.
This was frustrating because I was learning so much about how effective the diet is for managing cancer and clearly the hospitals were still offering nothing but the high carb Western diet to patients who have probably been put there as a result of such a diet.
When we finally got home we were completely drained from the whole experience, drained of emotions and drained of energy from all the waiting so I literally had whatever was available at home which happened to be a tin of soup which of course is loaded with sugar and other unnecessary additives.
At this point, I just needed something warming and comforting before I did that day's vlog recounting the whole arduous experience. It was still very hard to contain my emotions at this point and I felt stupidly uncomfortable on camera.
Although I knew I wouldn’t be making a very popular channel, I felt a sense of duty to make sure I had one done every day of treatment to show anyone else walking in my shoes what to expect and also for myself because although my family and friends were there to support me, I felt so alone being the one with the deadly disease.
There is a cruel divide that comes about as a cancer patient between you and your loved ones in this respect. Your family are tormented by worry for you and maybe not knowing what to say to keep you going, sometimes guilt that it’s you and not them. But as the patient, you can face difficulties trying to communicate your true fears with them because you don’t want them to worry or be as stressed as you feel about the situation.
As I got to know my online survivor friends better I was able to feel less alone because I was communicating with people that are in the same boat with their own loved ones. I was also finding more hope in communicating with them because they had all been through the worst of it and now managing the disease to make sure it doesn’t return.
It was around this time that I was lucky enough to meet other patients across the country, including those who had lower grade tumours but also facing the difficulties associated with that type of fight for survival. It was eye-opening to see that even people diagnosed with grade 2’s were losing their battles but in most of those cases, it seemed they were the ones that were told they didn’t have cancer so they simply lived their lives as though nothing had happened.
This was in The Brain Tumour Charities group on Facebook. I had gone there hoping I would find more answers for survival like I had from Andrew and David but instead it just seemed a group filled with patients who had accepted their prognosis and were simply “making the best of what’s left”.
Although it was frustrating seeing them accept it, I was in no place to intervene and tell them to put up a fight because mine had only just begun and I had no idea what even the near future had in store for me. Luckily there were a few inspirational proactive patients in that group.
One of them was a book editor called Vicki Harris who was rebuilding her life after her first brain surgery for a low-grade tumour. I was pleased to see she was already friends with Andrew so I knew she would be in the right mindset to “Never Give Up” which is a saying all us proactive patients say to each other like a kind of blessing or group chant.
I also met Claire Leach who was due to start the same length of radiotherapy shortly after I was to start mine. I was grateful for her friendship because it meant I could also concentrate on helping someone else with what lays ahead for once rather than relying on survivors that were much further ahead of me in their journey.
A week before my first session I had to go back to the Clatterbridge, this time with my fiancée to have my mask fitted. Aside from the anxiety, I was still blighted by, I was glad it wasn’t the first time I had been there because the fitting procedure was a very strange experience.
First, there is a lot of measuring and then the cast itself covers your whole face leaving you with a few seconds without air until the nurses poke a hole for you to breathe through. It’s also quite hot when it’s first laid over so it makes you gasp for that first breath. I could only imagine it must be what makes the act of “waterboarding” such a horrific toucher technique that is so celebrated by the sociopathic minded in society.
After the fitting, my only worry was that my fiancée would end up facing the same unbearable wait for an ambulance taxi home but this time we were luckier to only wait 30 minutes. Which was enough time for my fiancée to comfort me back to my proactive state of mind about the start of treatment.
We had one more day back there at this mask moulding department to meet with the Oncologist again, this time I was joined by both my parents so I didn’t need to use the taxi service as my Father could drive us all there as he was able to most Fridays when he would be off work. This was the first time my Mother got to meet my oncologist so it was a helpful opportunity for her to ask him questions about my treatment.
By coincidence there happened to be a lot in the news at the time regarding radiotherapy. The big story was an announcement that Proton Beam Therapy was due to come to the UK within 2 years. Because of the story of Ashley King was in the news that his life had been saved after his parents had taken him out of NHS care and off to get this treatment in a country that had it available.
The news almost acted as a sales pitch for it because they focused on the fact that Proton beams end when they hit a solid tumour rather than shine right through the brain causing more damage on the way out making it potentially much better for younger developing brains. However, I later found out that the media neglected to mention that it can cause much more damage on entry before it hits a tumour than the standard x-rays used in conventional radiotherapy machines which shine right through the brain hopefully killing most of the tumour than healthy cells.
Following on from this story cluster there was another related story that most of the Radiotherapy machines in the UK were out of date and much less accurate than the latest ones. It happened that is was the story that broke the very same day we went to see the Oncologist before treatment so my first question was how old the machines were that would be used on me.
I was pleased to hear that all the machines had been newly installed so I wouldn’t need to worry about accuracy. Dr Shenoy also debunked the story regarding proton beam therapy after my parents asked about it. He simply said that Proton Beam Therapy machines were overhyped in terms of their outcome and suspected that something else would have been in play to save the child’s life who had featured in that story.
Unlike the experience, my Parents faced at Walton, my oncologist here was much more upbeat about my chances which were long overdue comforting words for my Parents to hear after weeks of being more worried for me than ever before.
To Be Continued…