Visualising Illness
"I suddenly felt incredibly dizzy, as if I was being drawn into a vortex."
In June 2012 my father Peter was diagnosed with a Glioblastoma Multiforme grade 4, a type of brain tumour, and the most aggressive cancer that begins in the brain. Officially there is no clear way to prevent the disease. Typical treatment involves surgery, followed by chemotherapy and radiation therapy. Despite maximum treatment, the cancer usually re-occurs. The most common length of survival following diagnosis is 12 to 15 months with less than 3% to 5% of people surviving longer than 5 years. Without treatment survival is typically 3 months. My father has now been alive for 4 and half years, making him part of a small group of people that have outlived all life expectancy predictions, and it is not entirely clear why. Many people are not as lucky. Despite the rarity of this specific brain tumour (about 3 per 100,000 people are diagnosed per year), it is the second most common brain tumour after meningioma. At present there are over 130 types of ‘high-grade' (cancerous), and 'low-grade' (non-cancerous) brain tumours known to us, and currently, 29 people are diagnosed a day with a primary brain tumour in the UK. A recent study indicated that 74% of patients and carers felt that provision of information was the most important service. Considering this, some patients have responded to their diagnosis by "open sourcing" their tumours, publishing all information related to their illness online, creating platforms for experiences and advice to be shared. Response to this has been positive. As a photographer and journalist, my response to my father's illness has been to document his progress and communicate with other patients, families and carers around the world. My approach involves a mixture of mediums to convey both my and his experiences, including photography, MRI scans, and filmed interviews. I realised, through this project, that the camera became a tool that enabled me to gain control over my anxiety generated by his illness. His story is told here, as well as other patients and authoritative voices involved in the research of Glioblastomas. My aim is to provide first hand information around this often fatal condition, as well as encourage others to share their stories and experiences, and in the process raise awareness and create support for those affected.
On the 26th of June 2012, my father, noticed his left leg was not quite right when he was cycling. He went to the GP who told him he was fine. However, late that night, in the changing room of a swimming pool, he began to feel light headed. He called out to someone before "going into a vortex", and collapsed on the floor, losing consciousness. He was taken by ambulance to the hospital. An MRI scan revealed a mass the size of a grape in the right frontal region of the brain. It was later diagnosed as a grade 4 Glioblastoma Multiforme.
"I was rushed to hospital and immediately had a scan, and was told that I was going on a journey, and it was the beginning of the journey - something had been found." After successful "debulking" surgery to remove the tumour, Peter was fortunate to be accepted onto a clinical trial, that became available in London in July 2012, one month after his diagnosis. The vaccine involved injections that aimed to stimulate the immune system to deal with any recurrence of the tumour. "I'm convinced that the reason I'm still alive is because of the trial vaccine." Despite initial seemingly positive results from the trial, the desired success rate was not reached, and the vaccine was not funded. Funding for brain tumour research is far lower than other forms of cancer, despite the fact that brain tumours affect more children and adolescents than any other form - especially in males.
"The treatment I've received has been incredible." Typical treatment for Glioblastoma Multiforme involves surgery to physically remove the tumour from the brain. Removal of 98% or more of the tumour has been associated with a significantly longer life expectancy than if less than 98% is removed. However, this carries risks; the more aggressive the surgery, the more chance that neurological defects will occur in the patient after the surgery. "The first thing the surgeon asked me when I woke up was 'Do you have any paralysis?' Luckily my only effect from the surgery is a weakness down the left hand side of the body." Different parts of the brain control different aspects of the mind and body, and the type of possible neurological defect after surgery, depends on which part of the brain the tumour is growing. The brain is extremely sensitive, and has limited capacity to repair itself. Surgery is also necessary as many drugs cannot cross the blood-brain barrier to act on the tumour. Peter's treatment was successful. He suffered minor neurological defects, despite the surgeon's apparent "aggressiveness". Glioblastoma cells are widely infiltrative, and the majority of GBM patients later develop recurrent tumours within 5 years near the original site, or at more distant locations within the brain. This means for longer term survivors such as Peter, the statistical threat of the tumour is always looming.
"I went back to work full-time, but it was too much. The side effects of all the treatment were extreme fatigue and myalgia, which means you just can't work the normal hours you worked before. I did attempt to for a while, but it was absolutely exhausting, and I would suffer days and weeks of paralysing fatigue". Many longer term survivors of Glioblastomas encounter similar problems. One issue is that if you look at Peter for example, he seems superficially completely fine. The complexity of the tumour at grade 4 level (such as Peter's) is that even after successful treatment, it is still considered terminal, and likely to recur within 5 years. However, insurance companies sometimes contest this, often claiming that the employee should be able to either work full-time or not at all. "I now work half time, which is a very good balance for me, it allows me to do my job but still have enough time to recuperate. I'm very fortunate to have attained that because for a lot of GBM patients that's a very difficult thing to do." However, the process of achieving this was not entirely straightforward. As is common in other cases of GBM, the insurance company of his employer initially questioned why, if he was able to work half-time, he could not work full time. Even though they had been given the diagnosis, his life expectancy, and all the details of his side effects very clearly by the doctors. Peter is now reviewed every six months by the insurance company.
"Once I was back at work, I did have issues with appearing to be fine and functioning well, but you can suddenly feel incredibly tired, but you don't want to let the side down, so you have to manage that which can be tricky," says Peter. It is not uncommon for people who retire completely after diagnosis, to do worse because they don't have something to keep them stimulated. "I think it's important to have meaningful projects to be engaged on, whether it's through your professional life or something more personal."
Since the surgery, Peter continues to take medication each day. "Staying fit and taking regular physical exercise really help me, as well as regular support from my family. I've also been determined to get back to work as soon as possible. I try to eat well, and include anti-cancerous foods in my diet such as turmeric, blueberries, flaxseed, things like that. Not an extreme diet, but just a good diet." "There is a lot of research going on around the world. Many more people are aware of the disease now than ever before, making Glioblastoma less of a forgotten disease." So reports Professor Raymond Dwek CBE, FRS, FRSC, Director of the Oxford Glycobiology Institute, and Former President of the Institute of Biology. "International networks are being created across many disciplines in order for findings and research to be shared. Some of these approaches may not succeed but you still have to explore those avenues in order to discover what is going to work and what isn't." Raymond is optimistic that treatments for GBM are on the horizon. A 2014 investigation made a screening of various drugs for anti-glioblastoma activity and identified 22 drugs with potent anti-GBM activity, including a combination of irinotecan (a drug currently used to treat colon and lung cancer), and statins (used to reduce cardiovascular disease). Laboratory research using genetically engineered stem cells to target glioblastomas in mice was also reported in 2014 to show promise. "If we can find ways of accessing parts of the brain that are currently inaccessible, then we can start talking about a cure".
Adam Blain's (another GBM patient) Glioblastoma was also wrongly diagnosed by his GP. "I had a constant headache that lasted weeks and weeks, and intense hyper-salivation. I was initially told that the cause of this was reflux of the stomach and stress." As with Peter's case, the tumour was not picked up initially, and Adam was told generally he was healthy. It wasn't until three weeks after that the tumour was officially diagnosed. "The headaches became unbearable. My wife, who happened to be an oncologist insisted I have a scan. The news was broken to me by her, which is terrible for me and even worse for her. I was just in draw drop shock. I was told the median survival rate was 18 months." Adam has now been alive for 2 and a half years. General cancer survival rates in England are among the lowest in Europe, with 50% of cancer patients surviving 10 years or more, in comparison to 64.7% in Sweden. The cause of this is attributed to poor early diagnosis rates - something that both my father and Adam experienced. "If the government acts on the recommendations from the new cancer strategy" says Sara Hiom, director of early diagnosis at Cancer Research UK, "we can increase the number of people diagnosed at an early stage across all cancer types".
Adam uses a combination of medication that is typically used for diabetes and heart disease, Metformin - the first-line medication in the treatment of type 2 diabetes, and statin's - used to prevent cardiovascular disease. Initial research on the combinational use of such drugs has been positive. "I also take other more natural things such as turmeric, garlic, and green tea. Since his treatment, Adam has written a book on his experiences with glioblastoma multiforme: 'Pear Shaped', a witty, touching and honest portrayal of life with GBM. It has received a very positive feedback from the GBM community and demonstrates again the power of provision of information and personal experiences. A link to the book can be found below.
https://read.amazon.co.uk/kp/embed?asin=B00UNMY59C&preview=newtab&linkCode=kpe&ref_=cm_sw_r_kb_dp_eOpCyb7SCQX12
When asked about the future, Peter said, "I do have an underlying sense of anxiety about recurrence, I go for scans every few months, so that is constantly there. I think it's actually worse for people around me: friends and family. There's also this invisibility issue, because you've still got this underlying condition, but the illness is not immediately visible. So you appear to be totally well. This is something that can be tricky to manage. I just want to live a full life." "In many ways I think my illness has enabled me and my family to re-bond in an important way. Though it does also create more anxiety around me and everything I'm doing. I do tend to feel sometimes the spotlight is on me because everyone is anxious that I might suddenly get a recurrence or that I'm doing something that I shouldn't be doing that might cause my tumour to come back. But it does mean that we can spend a lot of quality time together, free from projecting long term into the future, or worry about what we're going to do with our lives," says Peter. I certainly feel personally - as the son of someone with GBM - that the illness has in many ways allowed me to re-kindle my relationship with my father, and taught me to live a day at a time, appreciating the fact that my father is still around, and that my little brother has a dad, and my step-mum a husband.
My father's story is extraordinary, and for now one with a positive ending. However it must be remembered that many people suffering from glioblastoma multiforme are not as lucky. Funding for GBM is still amongst the lowest of any cancer, despite it's often fatal nature and effect on not just adults but many children and adolescents. Diagnosis is generally also very slow, as with other forms of cancer in the UK. For more information on glioblastomas and brain tumours generally, or to donate to the charity please visit the Brain Tumour Charity website below. https://www.thebraintumourcharity.org
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Exhibited:
Fondazione Marangoni Gallery, Florence. September. 2017.
Fondazione Marangoni Gallery, Florence. September. 2017.