One Percent
A few months ago, I began following a YouTuber from Derry in Northern Ireland who goes by the name of Eireann Sharkey. I subscribed to Eireann’s channel because I was interested in following her unique story after she was diagnosed with brain cancer in late October last year. Overall, I find Eireann’s videos, both the positive and the negative ones regarding her experience, to be very inspiring. I cannot even pretend to understand her situation but it’s precisely for this reason that I find watching her videos to be nothing but valuable. I often find that whenever I am having a bad day, it’s easy for me to slip into the habit of thinking that situations are against me and I start to stress over my day-to-day problems, believing that they are more significant than they actually are. Something that Eireann said on Instagram which really touched a chord with me was that she would “cry with happiness” to be able to go back to her past “problems.” It truly resonated with me because it puts things into perspective. If I was given Eireann’s prognosis I don’t think I would be viewing a bad day at work or the stress of a deadline as crushing problems anymore. When you are told that you might not have the longevity that you were expecting to have in your life, it’s not that your problems disappear but you just don’t have the time to think about them as you used to anymore. Each day instead becomes about honouring the time that you have left with your family and friends, making memories that you can enjoy in the present and that will look to outlast you in the future.
Eireann was living in Ontario, Canada with her Canadian boyfriend Devin when she first discovered that she had brain cancer. She posted a video online just before her life-changing brain surgery, describing the events that led to her diagnosis. In August of 2023, at just 26-years-old, Eireann experienced an incident which she now believes was her first seizure. She was in an ice-cream shop after she went on a walk with Devin and his mum, when she spotted a packet of “bacon fries” that she recognised from her childhood in Ireland. As she turned around to her boyfriend and his mum to tell them about what she had found, she described a moment of confusion, as she forgot the name of the snack she was holding in her hand and the words struggled to come out. A little taken aback, Eireann phoned her mum to tell her what happened but in the end it was concluded that her confusion was due to the summer heat and Eireann didn’t experience another seizure for several weeks after. However, in late September, whilst Devin was away for the weekend, she said that the seizures returned and that sometimes they lasted “all day long.” She attempted to look up her symptoms online but said she forgot what she was searching for, could no longer read what was written on the screen and found that she had an intense pressure in her head. Eireann became seriously concerned for her health and she even began suspecting herself that she had a brain tumour. After seeking medical help, she was put on a waiting list for a CT scan as the doctors did not believe her symptoms were the result of anything serious. But whilst she was waiting, she had another seizure that turned her boyfriend Devin “white with fear” as he witnessed her forgetfulness and struggle to communicate. Concerned for her health, Devin took Eireann to the hospital and they waited 12 hours for an appointment. After an intense conversation with the doctors after struggling to persuade them to take her case seriously, Eireann finally received the CT scan she needed, alongside an MRI and it was here that the doctors discovered a “golf ball-sized tumour” in the part of her brain responsible for communication.
Eireann’s recent health update video was the most heartbreakingly honest one to watch. Not that a cancer patient’s journey is entirely damning. Of course it’s in many ways astonishing that the most physically weak of cancer patients and often the ones who are also in a lot of pain, are able to somehow find the strength to enjoy moments with friends and family. However, due to the potentially fatal nature of the disease, it is also expected for many cancer patients to still have their down days. After Eireann’s brain surgery, she was eventually able to receive some results as to the specific type of brain cancer that she had. The results showed that Eireann’s brain tumour was a grade 2 diffuse glioma. Gliomas are tumours that begin in the glial cells which can be found either in the brain or in the spinal cord. The glial cells are largely structural in purpose; they protect the brain against external damage, they create the fatty myelin sheath that insulates nerve cells and they also hold nerve cells together in order for them to carry out their function. A diffuse glioma is a tumour that begins in these glial cells and that spreads into healthy non-cancerous cells. Eireann explained that her neurosurgeon did an excellent job at cutting away as much of the cancer as possible, creating a good margin of error. This work, alongside the fact that the tumour is grade 2, means that it’s highly likely that regrowth would be slow. However, there has not been one person as of yet who has achieved complete remission from a diffuse glioma diagnosis. This is because after surgery, glioma cells tend to escape into the bloodstream meaning that regrowth is inevitable. When a glioma tumour does reoccur, it tends to come back more aggressive than it did previously which means that future regrowth might eventually lead to a grade 3 glioma. Eireann had a specific BRAF mutation in her cancer cells which meant that she could have been eligible to receive specific BRAF inhibitors that could slow down growth further, according to her doctors in Canada. However, in her recent health update, Eireann said that her doctors in Ireland advised against this treatment as it has hastened growth in some cases. She also said that her doctors in Canada were reluctant to give her chemo and radiotherapy immediately as it can lead to brain damage, something that is undesirable for her young age. As such, in her video, Eireann was explaining to her audience that she has an estimated 11 years left live.
I do not know what compelled me to write this article. It’s not as if I have had any close family who has suffered from brain cancer, except for one son of a family friend who sadly passed away at the hands of such a horrific disease. However, I would say that government policy does interest me and when I discovered that brain tumour research still only accounts for 1% of the UK’s national spend on cancer, I was completely shocked. I think the disease that scares me the most is cancer and of course being diagnosed with any type of cancer means signing yourself up for what will be a horrific ordeal. Chemo therapy can be a life-saving treatment for many cancer patients but it does make people very sick, extremely tired and many also lose their hair from the treatment. As such, with any type of cancer, it’s the loss of dignity and sense of self that can feel particularly demeaning, even though the treatment available is there to make you better. Nevertheless, brain cancer is still responsible for the vast majority of cancer fatalities for children and adults under the age of 40. Considering that the national spend on such a deadly disease is only 1% of the national cancer research budget, this is simply not acceptable. As it stands, there are many barriers in place to providing appropriate treatment for individuals with brain tumours. For instance, it has been reported that medical oncologists receive no mandatory training for neuro-oncology specifically. This is crucial because in contrast to clinical oncologists who specialise in radiotherapy, medical oncologists attempt to treat cancer with drugs. If such training was provided, there would be an incentive for medical oncologists to develop new drugs to treat brain cancer patients. Furthermore, preclinical models that are often tested on mice do not accurately represent the complexity of human brain tumours. Since the brain is the most complex organ in the body, treatments that show success in preclinical trials on animals, often fail in the clinical trials when tested on humans. There is a process called biobanking where patients can donate their tumours for research, which could relieve this issue. However, many hospitals currently do not have the infrastructure in place to carry out this process effectively. The Brain Tumour Charity said that the National Institute for Health Research (NIHR) and the Research Council are open to hosting competitions to promote new models in the pursuit of brain cancer research but that relies on the government in leading this initiative. Back in 2018, the Conservative government planned to invest £40 million over 5 years in brain cancer research but as of January 25th 2023, only £15 million of that budget has been awarded to research. Research often depends on what the government chooses to prioritise and if brain cancer is not on the government’s agenda, treatments will forever fail to actualise.
Brain cancer is not only fatal, it is also so cognitively degrading for many patients that for friends and family it is often hard to witness a loved one’s deterioration. For many diseases that are associated with the brain, I think this sentiment runs true. For instance, when my family first moved into our current home, we had a lovely elderly couple living next to us who we had a good relationship with. When me and my sister were young, my family would often go to their house where we’d have dinner and the husband would often get out his piano and sing a little song for us. The elderly couple was actually of the generation that grew up during the Second World War and so the husband’s favourite song to sing was “It’s a Long Way to Tipperary” but since his wife was called Mary, he would change the song to “It’s a Long Way to Tickle Mary” to which we would all laugh out loud and have a good time clapping along to his parody. Later, when my sister and I grew older, our parents would sometimes ask us to take slices of cake over to their house, whenever we had a birthday. However, it was always a mission that would often take longer than expected since my sister and I would often get asked in for a cup of tea and some biscuits so that before we knew it, we left their house two hours later. As such, it was a very sad time when the elderly husband, Cyril, was diagnosed with Alzheimer’s disease. On many occasions, he would come to our house and my dad would be very good at striking up a conversation with him, even though it would often be the same conversation that he had with him the last time they spoke. When Cyril was eventually placed into a home because he could no longer remember his son’s name, Mary was in her house by herself so one day we decided to invite her over for Sunday lunch and she brought with her some mint sauce that she made herself. Of course, I am not trying to say that Alzheimer’s and brain cancer are the same condition but I do think both diseases still impact people in very much a similar way. With both diseases, it’s the complete loss of personhood that is particularly painful to watch. In Eireann’s case, since her tumour was located in the temporal lobe of her brain, she is at a higher risk of having seizures even after surgery so she will continue to be on anti-seizure medication for the rest of her life. She also said that she will experience cognitive deterioration as the years go on. For Cyril, it was hard to witness a former Dunkirk veteran slowly degrade in the way that he did towards the end of his life. For Eireann’s loved ones and herself, I think it will be hard for them to witness the deterioration too but perhaps even more so since she is so young.
However, I do not wish to conclude this on a note of hopelessness. My favourite videos to watch of Eireann’s are the one’s where she is enjoying life, despite what her life entails her. I very much enjoyed watching the vlog that she did where she travelled with Devin to Munich to go and see the Adele concert and I also enjoyed watching her go on a road trip around Ireland with Devin and her friend Xanthe. I like these videos not only because they also show the positive aspects of Eireann’s life since her diagnosis but also because they show the attitude that all of us should be aspiring to embody in our own lives. Eireann has just been dealt one of the worst cards in life, to be diagnosed with a terminal illness. Yet despite this, she still has the ability to laugh off her sadness in a very Irish “wit in the rain” type attitude as I like to call it. Her prospects don’t look good but when she can, she tries not to let that get the better of her. If she has the strength to keep going in the hardships that she’s experiencing, maybe that should give us the strength to fight our own battles and perhaps, to fight for the cause as well. It is said that since 1971, there has been an overall increase in survival of less than 10% for people with a high grade brain tumour. To think that there has not been much improvement in the prospects for people with a high grade brain tumour in the past fifty years, is quite telling with regards to the state of funding towards brain cancer research. I think that because brain cancer cuts people’s lives so short and so quickly, it makes coming up with better treatment harder because there is a time limit placed on these patients’ lives. As such, I feel as though people do not hold much hope for brain cancer research and I think that’s quite a universal concept. The fact that Eireann was not initially taken seriously by her doctors in Canada, suggests that perhaps for many countries in the world, brain cancer is not on their list of priorities. However, it is precisely because it is an underfunded field in medicine that it needs to be given more attention. Brain cancer affects so many once healthy young people and sees them deteriorate in the most unimaginable of ways. Perhaps it will be hard to treat many of these patients to the point of complete remission but I am confident that with a bit more funding, new treatment will enable patients to live with their condition for at least a little bit longer and with a much better quality of life. Although 11 years is not long, it’s a long enough time to make a difference and I hope that Eireann continues to make her videos regarding her diagnosis and I hope that you can also educate those around you about brain cancer. Any bit of education on this issue will help persuade the government to view research into this differently, bettering the prospects of brain cancer patients in the future.
How has hearing stories like Eireann’s impacted your perspective on life’s challenges, and what do you think can be done to raise more awareness and funding for brain cancer research? Let me know in the comments below and I’ll be sure to reply to them. I love hearing what you have to say!
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See you next time,
Bye,
XOX, Juliette