Surviving Brain Cancer in a Precarious World

Part 21: Free of disease, riddled with flaws...

As autumn came in 2016, news broke that one of the most well-known brain tumour patient activists had passed away called Anna Swabey. She had recently been to all the major parliament debates on increasing funding and had done many pieces online and on TV to promote more funding for brain tumour research.

My initial reaction was my most embarrassing and reactionary move I had made that year. I was aware of her podcasts that she unlike me and my friends in the Beating Brain Cancer support group, accepted that the disease would likely kill her before any major breakthrough would be made clinical.

So she made a choice to live her life to the fullest and not make any huge sacrifices or disciplines like we were in radically changing our live styles to have a shot at beating it. She was due to get married that year to her fiancé who had in his own way become a great ambassador for caregivers who had a loved one diagnosed with the disease.

This was not to say Anna was not making any efforts to fight her own disease, she had surgeries and was on a staggering 14-month continuous chemo protocol.

In the Beating Brain Cancer support group we are not dissidents to the standard of care, more a group advocating that it is applied better and optimized so that data where adjuvant therapy of all kinds show an increase in effectiveness of the standard of care, they should be adopted and not ignored.

The problem was when I saw this story I freaked out because I felt she had been left with 1 monotherapy what has seems to have only around a 4% chance of providing long-term survival. So I vented my anger and posted my presumptions on FaceBook. Big mistake…

The problem was it was rude and disrespectful of me to do this so soon after she had passed away because it simply used her case to highlight my own opinions that continuous monotherapies are useless and simply just make the patient feel awful with the side effects.

Whether that is right or wrong, it was most certainly wrong of me to just use the news of her passing to make this point when really I should have just paid my respects to her family and her fiancé who lost her just a day before they were due to marry.

This set in motion an argument on Facebook between my own family and my fiancée’s best friend who rightly called me out for my abhorrently timed post. This reminded me of how irrational I could be before my diagnosis. So although I had clear scans, I felt it was a reminder that I was still a deeply flawed character with a very clumsy approach to social media.

The rest of the day was ruined because of this because it had upset everyone involved in this dispute, leaving me feeling embarrassed and ashamed that I could have avoided it all if I had thought more rationally before I made such a post.

This played into the hands of my sister who had on and off had many fall outs with the whole family through my entire adult life. The problem was, she seemed to revel in the chaos of it all because there would always be a cunning smile when she knew she had successfully played someone off against another family member or exploited someone’s weakness.

I should state that I had never really had a good close relationship with my sibling especially since college where I would be getting bullied on a bus home by her and her friends when she was meant to be looking out for me and helping me adjust to the new environment out of school.

It had got to a stage where I was not bothered by how I was affected by her games but more upset that she would always be targeting my mother phone with abusive text messages designed to bring her down whenever she just needed some support to boost her confidence, whether it was recovering from a car accident or dealing with the fact that my Dad sometimes had to work so far away as the UK car industry struggled ever since the late 90’s.

We were told it was because my sister had hormone issues that she had so many anger problems but I had met plenty of women in my 20’s who had the same but would never go as far as to use their own children as emotional blackmail to hurt their parents. The fact is, she had threatened my parents in the past to remove their grandson from their lives and done that very thing for an entire year before she found out I had cancer.

There was definitely something more malevolent than just hormone issues causing her to have so many anger issues. It seemed her partner would egg her on when these events would happen and strangely he had ostracized his own parents just 2 weeks after their child was born. I felt even worse about my mistake that day when I realized my sister had waded in and released a torrent of abuse at my fiancée and her friends.

I had basically enabled her to go back to her old ways of reveling in chaos and division. At one stage later that day it seemed things were cooling off. When I went to bed that night I felt dizzy from all the stress but mostly anger at myself for being so foolish. This was also poor timing because my parents were looking to move to a nearby village from the isolated hamlet they were living in which was torcher For my mother in the winter months, especially after she had already had her grandson removed from her life and as a proud loving grandmother, she was tormented on so many levels.

The whole experience of the early part of my cancer diagnosis had also taken a huge toll on her and I felt guilty that cancer had come ruined the year for her through me. I also felt truly guilty that I had made such a poorly thought out divisive post after my mother had been there for me during almost every radiotherapy session.

As my sister signaled to my parents she would take their grandchild out of their lives again unless my fiancée was punished in some way for defending her best friend against my sister's abuse, I knew I had to get out of the way of their house move at least because I had caused the argument to erupt.

I then spent the next month living at a friend’s parents’ house while both my parents and I waited for our houses to be ready to move into. Because I had such a big computer set up, it would have been in the way of them trying to sell their home so I needed to get it out of there too.

As I left that night I gave my mother a big hug and I could see in her eyes that she was simply scared of losing her only grandchild again, along with my Dad who avoided social networks because of these very divisive events they can cause families to have.

When living away, I was able to turn up to work each day as it was only a few miles from the office. The family I was staying with were lovely and very understanding of my situation waiting for my house to be ready to move into.

That October, we were promised by the builder that our house would be ready to move into in early November, so I was then put up by my fiancée’s parents who lived closer to the new house and the storage unit where all our furniture was being kept. When I moved in I then went to work carpooling with a freelance friend from work who would commute twice a week and where I was staying just happened to be along with his route to work.

After the first workday commuting this way I was dropped off at a restaurant in Chester where my Fiancée had gone to with some friends. Aside from feeling a little tired from all the traveling, I felt fine and had a meal with them.

To combat the tiredness from the earlier start to catch my friends lift, I had drunk some coffee at work that day as I was just getting a taste for it again now that I no longer had stomach issues since starting cannabinoids and the diet.

Shortly after I finished my meal my fiancée and I were chatting with her friends and suddenly my left leg started to twitch. Only it didn’t stop, it started to jolt more and more and each time it felt like an electric shock was going through my legs. Before I knew it my whole lower body was doing this painful jolting and twitching. My heart race went into panic mode as I leaned over to my fiancée to say “I think I’m having a seizure”.

The next thing I knew my hearing turned to increasingly loud tinnitus, beyond the ringing I could just hear people screaming my name as my eyesight just went more and fuzzier. At the same time, I felt dizziness like I had never felt before. It was such an awful feeling that I just couldn’t wait to pass out.

The next thing I remember was waking up in the back of an ambulance with a paramedic attaching lots of things to my chest for monitoring. I felt like I had been put through a boxing ring blindfolded. I was so out of it that although I knew I had suffered a breakthrough seizure I didn’t really care about anything because I was still coming around to reality.

When I was then put onto a bed and wheeled into an A&E ward, that is when I started to feel uneasy. I started evaluating to myself what had caused it and if this meant the tumour was back because I had never experienced a seizure since the very start of this cancer journey and back then I had no memory of the seizure starting because I was in a deep sleep.

What frightened me most was the pain memory and familiar confusion I felt when I first woke up from that first seizure. Every grand mal seizure is life threatening so I was of course just happy to know I had survived it. It took me awhile to notice my tongue had been shredded like the first one.

After falling back to sleep I was greeted by my fiancée, her parents and my parents who had been called to come over. I could see that everyone was very worried because I had been doing so well up to this point. I asked the staff there if I would be able to get an MRI to check if anything had returned, They tried to reassure me that I should be fine to go home and contact my oncologist to see if I could get an earlier one booked with them.

After all my blood work had been done it seemed the staff there got quite confused. They thought I had diabetes because my blood sugars were so low. I explained to them that I was on a strict ketogenic diet. After a few minutes of them talking with each other, they agreed it was due to my diet and said I could get out of the bed and go wait with my family for the rest of my blood results to come back.

This is where the cracks in the underfunded NHS become super apparent as we ended up waiting until 3 in the morning after one nurse after another told us the results would be coming soon. In the end, we just gave up and went back to reception to tell them we were going home. The man behind the desk who had originally told me to go wait for my blood results looked embarrassed and apologized in a way that he was simply over-worked and couldn’t keep up with the chaos around him in a busy A&E department.

My parents dropped me and my fiancée back at her parents’ house where I needed to get to sleep soon before my seizure threshold dropped again with such a messed up sleep cycle. I really didn’t want my parents to leave though after everything that had happened and I felt terrible that they had come all that way and been made to wait for hours with us so late at night all for nothing in the end.

The next day I instantly felt the pain from all the pulled muscles, mostly in my legs and abdomen. I contacted Doctor Davis my GP to explain what had happened. Because she had originally prescribed my Clomipramine over the summer as an off-label anti-depressant from my request after talking we researchers who had trailed it and found therapeutic benefit against brain tumours, she suggested I lower my dose.

This was because a possible side effect would be a lowering of my seizure threshold or interference with my anti-seizure medications. The problem with Clomipramine is that although the data showed promising results against brain cancer, it was only therapeutic at a very high dose which had to be slowly worked up to with increments every 2 weeks.

At the time I had this seizure I was on 150mg which is just 50mg shy of the estimated therapeutic dose for a middle -aged or elderly patients with a slower metabolism. We agreed I should try to lower my dose back to 100mg and see how things went from there.

To Be Continued…