Most people will face challenges and barriers in reaching goals in life. These, however, become far more complex after a brain tumour in childhood. We not only live with the effects of the tumour and treatment but also have to navigate a world that was never designed to accommodate our survival.
My treatment finished over 30 years ago but I still live with consequences of my tumour and treatment. These include difficulties with memory recall and processing speed, balance and coordination, impaired vision, impaired hearing and fatigue.
I consider myself to be disabled but within our society there is no clear category for ‘survivor of a childhood brain tumour’. The hidden nature of my difficulties makes it more difficult for people to understand the impact.
It isn’t surprising that there is a lack of understanding around childhood brain tumours as, fortunately, most people aren’t affected directly in life. However, I think it’s important that more people are aware of these issues as greater numbers are surviving and, at the moment there is no holistic care pathway to support survivors.
In my experience, mention of childhood brain tumours often conjures up an idea of children with cancer. The tumour I had was malignant and cancer but not all childhood brain tumours are cancers. All young people who have a brain tumour, will live with acquired brain injury. That is not to say that following a brain tumour, a young person cannot achieve and succeed in life. I believe that all ‘survivors’ have potential to achieve their best but there are numerous obstacles that need to be negotiated along the way. Many also wouldn’t know that treatment is toxic: I have lifelong visual impairment caused by surgery, hearing impairment due to chemotherapy and significant cognitive difficulties due to radiotherapy.
There was no rule book or support guide when treatment ended and it has felt very much as though I was left to simply sink or swim. Little interest was shown in my later development by my oncology team or indeed my school. The only consistent support and encouragement has been from my family a few loyal friends.
It is difficult when my ability to progress is dependent on the decisions of other people, many of whom don’t understand the impact of my brain tumour. The acquired brain injury that I live with means that I have had to adopt strategies to cope with the impact of my slow processing and memory deficits. This does not mean that I have ‘got over’ the issue. It means I have to work harder every day to plan and organise in a way that most people don’t. So the fact that, for much of the time, my difficulties are not obvious, has led to assumptions that I didn’t need support or that the impact of my brain tumour is not significant. I was told by a professional recently that I was ‘making excuses’ and ‘living in the past’ when trying to describe these issues.
There appears to be poor understanding regarding the developmental impact. The brain is particularly adaptable in childhood and goes through several stages of development and maturation. This means that any support or intervention would be most effective as early as possible. The final stages of brain maturation are generally thought to occur in mid to late twenties so it makes sense to me that all levels of education should be adaptable to the needs of young people who have had a brain tumour, from preschool through to postgraduate education.
My entire development since age 9 has been affected by the brain tumour and treatment. Yet, as an adult, I’ve had over 30 years of minimal understanding of my needs. From support at school, college and repeatedly at university. I don’t ask for much: extra time, a tutor in the subject I am studying, for example, but at times these have been refused. I have the determination and motivation to work the extra hours I need. However, those who have the power to make decisions as to whether I can study a certain course or be employed, follow rigid rules and prefer straight linear trajectories and faster brains. I can’t beat that no matter how hard I try.
At my age, it is generally expected that I would have achieved more. How do I gain the relevant experience required if nobody will give me the chance to prove myself? It feels as if I’m being punished for something I can’t help and am untrustworthy. The injustice is more painful than I can describe!
From my perspective, little consideration has been paid to the impact of childhood brain tumours and treatment now that so many young people will survive. Take for example, the type of tumour I had, (medulloblastoma) the most common malignant tumour in childhood. The effects of the tumour and treatment are well recognised so it makes no sense to me why there is no established support for survivors.
Society places a lot of emphasis on saving lives and ‘fighting’ or ‘curing’ cancer, particularly for children, and very little talk of quality-of-life following treatment. Many of us live but are left with life -long disabilities. Clinical trials in this field have clearly been successful in enabling large numbers to survive, but perhaps there should be a shift in focus to examine quality of survival also.
I think it is now important to re-think how survivors of childhood brain tumours are supported across all areas of life. There needs to be a coordinated effort to identify the areas that ‘survivors’ prioritise and greater funding for research into quality of survival.
From my experience as a survivor, the basis for many of the barriers for me have been lack of understanding, rigid rules and loop holes which allow indirect discrimination.
Some changes I suggest would be to:
- Improve the EHCP application process and increase pressure on schools to meet survivor’s needs.
- Improve access to employment and create incentives for employers to recruit survivors.
- Alter the GCSE biology curriculum to enable better understanding of brain development, plasticity and involvement of the brain in processing sensory information. If more people understand these issues, maybe there will be improvement in support.
Those with the power to make changes should speak directly to survivors. We understand issues that no professional (who hasn’t had a brain tumour) can!
