FEEL Lab member Aya Uchida wins Karl David Yeomans Prize

By Aya Uchida

As I sat down to write this essay, I reflected on the reason this award exists. I want to thank the Yeomans and Buxton families for this opportunity, for their recognition, and for keeping the light burning for brain cancer awareness. Karl David Yeomans passed away 11 years ago, aged 33. This is for Karl and thanks to Karl, without you I may never have pushed myself to reflect on and put into words everything brain cancer taught me.

Brain cancer is not something I ever thought about—until it happened to me. Even after my diagnosis, I didn’t know how to feel, what to expect, or what this illness would mean for my life, and I still don’t. You can’t understand brain cancer from statistics or textbooks alone. You have to reflect on living through it—or deeply listen to someone who has. This is my story. My hope is that by sharing it, I can offer a window into both the medical and emotional realities of brain cancer: not just as an illness, but as a part of someone’s life.

Brain Cancer as an Illness

When it comes to brain cancer as an illness, diagnosis comes from a brain scan through Magnetic Resonance Imaging (MRI), which often includes ‘contrast’ by injecting an intravenous magnetic dye (gadolinium), that accumulates in certain tissues to create a clearer outline of a tumour. What followed for me, were several behavioural, blood and visual tests, and a lumbar puncture (spinal tap). The spinal tap was to check for any signs that the tumour could be cancerous and spreading into cerebral fluid that flows around the brain and the spine. Thankfully, for me the signs were clear, but I learnt, this does not mean you are in the clear from cancer. This just means it is not aggressive enough to spread cancer-signalling cells into the cerebral fluid.

Unlike other cancers, brain cancers are graded, not staged, because they do not progress in a predictable sequence. They can begin at any grade, and even change grades. There are primary and secondary brain cancers, where the latter are the result of metastasis (spreading from other parts of the body). As for primary tumours, there are four grades. Grade 1 being benign (tumours that grow slowly and rarely spread into nearby tissues), and grades 2, 3 and 4 being malignant. Where the tumour grows slowly but may spread into nearby tissues or recur (grade 2), grow quickly and spread into nearby tissues with cells that do not look like normal cells (grade 3), or grow and spread very quickly with abnormal cells (grade 4). There is no way to determine the grade of a brain tumour without a biopsy. A biopsy can be done in a keyhole-like surgery, or a craniotomy where a portion of the skull is cut away. With a biopsy and a more concrete tumour diagnosis, comes more concrete treatment options. Namely, surgery, radiation or chemotherapy.

This is a brief description of the objective diagnosis and treatment process for brain cancer. But brain cancer doesn’t occur inside a vacuum, or a textbook. It occurs inside a human being. A person who is part of a family, with friends, colleagues, routines, responsibilities, and society. Brain cancer, like many cancers, is an invisible illness. But the survival rate of brain cancer is much lower than others. Where the average five-year survival rate for brain cancer is approximately 33%, compared to breast or prostate cancer, which is approximately 90%, and 98% respectively. This is likely due to the many different types of brain cancers, which have different trajectories based on their location and grade. Practically, this also means it is rarer for us as a society to know and learn from people with brain cancer experience. The facts alone cannot convey the lived reality. This is my story.

The Diagnosis

I’ll never forget the moment I was told I had a brain tumour. I was at work when an unknown number rang — it was the principal investigator from the MRI study I’d participated in a few weeks earlier. Their voice was shaky, and I thought that was strange. Then came the news: my MRI had shown a mass, I needed further scans, starting tomorrow. Unfortunately, I happened to be moving house tomorrow, so after packing the car, I went and got a two-hour brain and spine scan, went back to unpack my things in the new place, then got a call from the hospital. I needed to pack my bags and return to the hospitals’ emergency room for more tests.

The hospital visit was a rollercoaster; everyday was a new doctor explaining their (different) plans for treatment. Take a biopsy to find out if it’s cancerous, start with radiation to shrink it then cut it out, and finally on day seven, the last doctor explained that because I had no symptoms, I would be discharged and monitored with regular scans and check-ups. I figured out the treatment plans kept changing because 1) my tumour was rare – a pineal parenchymal tumour and 2) it was an incidental finding. Meaning it was found by coincidence, and not because I was showing symptoms.

The pineal region is right in the middle of your head, encased by the cortex, the wiggly grey-matter part of the brain. Because the tumour was blocking cerebral fluid, this made the margins for entry (through the corridor where the two hemispheres of the cortex butt up against each other) too slim for even the tiny keyhole surgery tools. So without a biopsy, I was preliminarily diagnosed with a pineal parenchymal tumour of intermediate differentiation, grade 2, and the neurosurgeon decided to see if in time the tumour grew, either fast enough, or blocking too much cerebral fluid, to move on to surgery.

The first scan, three months after the hospital visit – no signs of growth – great, life as per normal. I wasn’t even bothered, I really thought it would stay that way forever. Sadly, three months later, there were signs of growth. Meaning the tumour was not worth waiting for something potentially catastrophic to happen. We booked in the surgery and that was that. Finding out I needed brain surgery, happened to come the day after I passed my one-year confirmation for my PhD candidature – where I had just laid out the next two years’ worth of plans. Needless to say I was devastated, and too distraught to function, I could not imagine my future.

Surgery and Recovery

Nothing about life is guaranteed after brain surgery. The risks include death, stroke, infection, disability, to name a few. More than fear, I felt despondent. I was overwhelmed by everything I needed to do – like re-planning my whole life, not to mention breaking the news to everyone.

Waking up from brain surgery was the worst I have ever felt in my life. Nausea, throbbing pain, immobility, barely able to open my eyes and cross-eyed if I did. That was life for the next few months. The good news was they were able to cut out the entire tumour. The neurosurgeon was impatiently waiting for the lab results to tell us how cancerous it was. I was under the assumption their tests would clarify if it was a grade 1, 3 or 4 – no such news came for the entire of my 10-day hospital stay. One day after leaving hospital, I was at home in bed, about all I could manage for the next few months – when I noticed a missed call and voicemail. The neurosurgeon left a voicemail telling me the lab could not determine the tumour’s grade, and the tumour simply was a grade 2 pineal parenchymal tumour of intermediate differentiation. That didn’t mean much to me, I was still struggling to shower without wanting to collapse from exhaustion.

Some weeks later, I was informed I had appointments with various cancer departments about treatment options. Luckily, the outcome was that with no presence of tumour remaining, there was no need for treatments, and that MRI monitoring would be sufficient. I’m very grateful for that outcome. While a very optimistic brain cancer survivor told me radiation wasn’t that bad, another friend with brain cancer had an awful experience being very sick and now with permanent hair loss.

Brain surgery recovery is a monstrous task. The end is never in sight – there is no certain path and I felt stranded by the medical system. I was told I could get back to work six weeks after surgery. Come two, three, even six months later and I could still barely get ready let alone leave the house. I got tired just having breakfast, a shower, and getting dressed. How could I walk down the road, get a tram, then sit at work for another eight hours, only to commute back home and need to do the night routine? Impossible. There were times I tried, and there were so many failures – leaving me close to collapse on several occasions. I just wanted to be well, and still wasn’t. I tried everything I could think of, was suggested, and could get my hands on. Finally, about 10 months post-surgery, I still felt half-alive and a doctor suggested physical therapy. For me, this was the turning point. Which made me wonder: why hadn’t anyone in the system suggested physical rehabilitation sooner? After a month or two of one-on-one scaled back personal training, I felt confident enough to join the gym, and have been going consistently and feeling better ever since!

Reflections and Meaning-Making

Despite the prolonged and ongoing intensity of this experience, starting from diagnosis, to surgery-lead up and finally recovery, one thing I can say is, brain cancer taught me so much, mostly about myself, and not taking anything for granted. Every day I am more and more grateful for having experienced this intensely unique side of life.

More than anything, this illness taught me the value of health – and how little we prioritise it. What could possibly be more important? For example, I no longer feel guilty cancelling or rescheduling social or work plans if I’m unwell. I finally learnt to never put anything above my health, even if it took brain cancer to realise. Related to this, the gym – I never saw the point of paying to exercise, but this is something I can thank brain cancer for. I learnt the value in pushing your muscles to their maximum capacity on a regular basis, a unique benefit of weight training exercise (thank you Dr Roy for your insight and Dan for your exercise plan).

Second was navigating disability, and along with that, ableism – where our society unconsciously favours able-bodies. I now have an acquired brain injury and permanent vision disability, both of which are invisible disabilities. Our society is not built for people who can’t ‘keep up’, and I sometimes feel like our society isn’t even built with anyone’s health in mind. People with invisible illnesses shouldn’t need to declare their disabilities, but we often feel like we need to just to receive some (not guaranteed) understanding. Without my own personal experience, I too would be living unaware of accommodating a wider range of needs for people, without them having to explain.

Challenging reflections also crossed my mind. For example, do I agree with brain surgery? While I was struggling to recover, I had some morbid thoughts about the validity of modern medicine. In particular, life-threatening interventions like the brain surgery I just had. I started to think that sawing open my skull, holding my cortex apart for hours to cut out cancerous tissue from within my brain was like bypassing my fate, playing god. I felt like the aftermath of that level of interference was the proof that what had occurred was not right, healthy, or valid. The intense struggle directly after the surgery felt inhumane, and the prolonged struggle where I felt half-alive, made me question the importance of medicine that reduces quality of life. I doubted whether this pain and struggle was necessary. Especially, because I had never had symptoms before the diagnosis. For a long time, I wondered whether it would have been better to either do nothing and keep living, try alternative, eastern, or naturopathic methods, then get sick and pass away naturally, whenever that is, without the interference. But that did not happen, so I live to tell this story, and I hope it brings any small insight and value.

Practical Advice

Based on my experience, here’s how I think we can better support those with brain cancer:

• Diagnosis: Offer comfort, avoid pity.
• Surgery: Seek realistic accounts for your specific surgery if possible – not just optimism.
• Recovery: Do not rush, it takes years. Healing is not linear. Fatigue is normal. Support groups are lifelines.
• Compassion: Invisible illness is real. Assume there's more going on than you can see.

If someone tells you they’ve been diagnosed with a brain tumour – of any kind – comfort them. It could be a hug, bringing groceries or home-cooked food, or saying ‘I’ll be here with you’. There are no perfect words, no matter how much you want to, you cannot make it better. If you haven’t had a similar diagnosis yourself, chances are your sympathy will feel more like pity. Your job is to simply understand that you will not understand, and convey that you are there to help. Having to deal with other’s dread and sorrow on top of my own was awful. Just comfort me, that is all anyone can do.

Next is the surgery. One thing I wish I had known was more accurate information on what to expect after brain surgery. The medical system warned me of the textbook risks, but I was never given practical information on what to expect for my daily functioning. I did reach out to brain cancer organisations and met with the president of a support group – who herself has had nine brain surgeries. She was bubbly, bright, and at 50-something years old and nine brain surgeries down (plus radiation), starting from when she was a teen, I was in awe. Perhaps she didn’t remember the aftermath, or was trying to shield me from the despair, but I left thinking I could get back to work after six weeks like the doctor had mentioned, which for me, was not a realistic picture of what to expect. If anyone is about to have brain surgery, please know that for months after, you will not be ‘yourself’. Every day is a new day, where you need to check-in with yourself, gauge your physical and psychological state, adapt, be flexible, get comfortable fearlessly prioritising your healing.

After the surgery, in my desperate hopes for more information on when I could expect to get better, I found a support group of other people living with brain cancer. This opened a whole new world. I didn’t realise there were so many types of brain cancers – all with different treatments and different outcomes. Some cancers are terminal from the get go, and I got the sense the person didn’t have surgery and probably wouldn’t. Some couldn’t have surgery for some reason or another, so had to live with the cancer in the uncertainty. Others have multiple surgeries and treatments, but ultimately live with an incurable cancer. Then some were like me, told they could be back at work after two months and confused at six months wondering why they could still barely sit up. Thankfully though, through this, and from the support group organisers I found that brain surgery recovery takes years, and fatigue and exhaustion are perfectly normal. For me, I found the fatigue began improving around 12 months, which was also soon after I began the gym. Now at two-years, although I have now completely adapted my lifestyle, I’m relieved the fatigue doesn’t loom over me anymore, and I can go about my day without the fear of urgently needing to lie down and rest.

Which brings me to my next point for anyone recovering from any type of illness, rest rest rest rest rest, and do not rush or push yourself. Earlier on in my recovery (3-6 months) I was trying to be active, thinking that might help. Whether by taking walks or trying to work. I doubt it did help. I think time and rest are going to be your biggest allies, and eventually there will come a time when you can work and be active.

Finally, for recovery and beyond, survivors and people living with brain cancer need compassion. Being an invisible illness means people treat you as if you are ‘normal’. I really struggled with this in the earlier months of recovery because to the public, I appear young and healthy, and people understandably treated me accordingly. They didn’t know I couldn’t see properly, that I struggled to keep up with pedestrian walking pace and stand on public transport. Try not to see someone behaving out of the ordinary as someone inconveniencing you. They live with that inconvenience, are more than likely hyper aware of their (in)ability. They at least deserve compassion.

Conclusion

This essay offers only a sliver of what life with brain cancer is like. It may sound strange, but I am grateful for what this illness taught me. Despite pain, loss, and uncertainty I have emerged stronger, wiser, more compassionate, and in many ways, more alive. My hope in sharing this, is that my story illuminates just a little of what some brain cancers can look and feel like, and bring insight to how we can better support people with it.