The Mark Hughes Foundation is a charity raising funds to support research, raise awareness for brain cancer and support brain cancer patients.

Tom's Story - Life Begins at 20

At the age of 19 I was a fit and keen Rugby Player playing in the ACT region Under 20 (Colts) competition. I played as a flanker and loved the sport, loved the training and loved competing. We didn’t win many games but I didn’t care. That year, 2002, I was selected in the ACT Under 19’s Rugby Union team to play in the Trans-Tasman Under 19 competition. This was a great thrill and planted the seed for potentially making a career out of Rugby. The same year I was also awarded the ‘Best Forward’ award for the Colts team.

The following year I switched clubs to be closer to home and to try an environment where I wasn’t known. After having several shoulder injuries from playing in the forwards I decided to have a go playing in the backs and developed into a fullback. I was, fit, fast and strong and looking forward to making a splash in the open age grades the following year. At the presentation evening (for which I was absent due to a family holiday to Queensland) I was awarded the ‘Best Back’ award for the Colts Team.

About a month later I was working at a Queanbeyan Primary School presenting a Farm Animal Patting Paddock, (that was my job at the time). We had just driven the 50 minute from Yass to Queanbeyan, unloaded the animals, and were introducing the first lot of children to the animals. One of the children asked to pat a duckling, I opened the cage, and then woke up on the ground throwing up, being comforted by an Ambulance officer. Unfortunately I don’t know what happened in between, other than what I was told at the hospital. I’d had a Gran Mal seizure.

My dad arrived at the hospital soon after, looking understandably worried. Initially the doctors were assuming that I was experiencing the onset of Epilepsy. This was quite concerning and not something I was too keen on. They monitored me through the afternoon and as I had had no further seizures they decided it safe for Dad to take me home. I was to have a scan of some sort the following week. I was starving, so we stopped off at McDonalds. We then headed home via Sutton. When I woke up this time Dad was carrying me into the hospital, I was covered in regurgitated McDonalds and I think he was too. I think I stayed that night in the hospital and the following day went via Ambulance to have an MRI scan. The first time was an unusual experience but I managed to sleep through most of it.

That evening, the 27th November, back at the hospital with my Dad, Mum would have been at home with my sister Bethany, The doctor came to have a chat and advised me that the scan had shown up ‘a spot’ on my brain. Not really knowing what that meant, my dad and I asked questions. It turned out that ‘a spot’ means a tumour, roughly the size of a Golf Ball or a Small Lemon. They told me I’d be going to have brain surgery to remove some of it but not all because of its close proximity to the motor cortex. They told me I would then probably have Radiation treatment. I stayed in hospital for a few more days before being allowed to go home once they had me stabilized on some anti-seizure medication. And then for a few days all was back to normal.
As normal as it could be... There was extra attention, my brother had come home from Sydney and everyone looked genuinely concerned. Which was a bit weird, because I felt fine. I was still strong, still healthy, still fast, but there was thing in my head. I carried on with my hobbies while I had a few days off, my ‘hobbies’ had been basically the same since I was seven and revolved entirely around football and ducks. Yep, Ducks. They are my quirk, my pets, my downtime. I breed them, hatch them, grow them, sell them and I show them. I did not realise their importance in my life for a number of years to come but I’ll get to that. And yep, Ducks.

I went in for surgery on the 12th of December 2003, the day before I had gone and got my head shaved, I think my Aunt Sharon kept the hair for an art project as I had a fair mop of it. That was the first time I felt a bit concerned. I’d not had surgery on anything before, not even stitches, so my first one was going to be a big one!

When I was getting prepared for the surgery they shaved my head a bit more, painted my head with disinfectant and got me into patient scrubs. It was then time to be wheeled away from my parents and seeing the fear and worry on their faces choked me up. That didn’t last because then I had the overly cheery nurses and anaesthetist talking to me and at me. The anaesthetist explained a few things, put in a canular and then challenged me to count to 100.

The surgery apparently took 8 hours and was conducted as a large biopsy, taking out much of the centre of the tumour but leaving untouched the outer rim that was in direct contact with healthy brain tissue.

On waking up the first thing I asked for was a sandwich, I think this provided great relief to my parents. The only real side effects I was suffering was a bit of ‘neglect’ in my left hand which meant that my fine motor skills were a bit out of tune. This returned to normal after a couple of days and 7 days later I was on my way home with a massive horse-shoe shaped scar on the right side of my head. I decided to not have Radiotherapy at the time due to the very real side effects it could have on the rest of my brain such as memory loss, reduced functioning etc. As I was only twenty I wanted to get as much use out of my brain as possible.

The tumour was monitored frequently over the next few years as I continued my life. I had commenced a course at uni in 2004 (3 months after having surgery). It was hard initially but I eventually worked out the best way to get through it. By this I mean I took the P’s = Degrees approach and spent my spare time in the gym.

I attempted a return to Rugby in 2005 but this was short lived as my parents and coaches grew concerned over the wisdom of me engaging in contact sport. They took the approach to not select me anymore based on their concerns. This hurt because I was fit, but I must admit the difference between colts rugby and Grade Rugby, where you are competing against seasoned hard heads was much bigger than I had imagined, and despite being physically fitter and stronger than I had ever been, I accepted the decision and moved on.
As well as Uni I had several casual jobs that I fit in around study and on weekends, something had to pay for my hobby. I did weekend mornings at the local farm supplies shop, weekend evenings cleaning dishes at a local restaurant and afternoons delivering an after school sports program to schools across Canberra. In 2005 I began doing after school care at the YMCA and it was in this role that I met Brianna, my future wife! We didn’t talk much during our shifts together, mainly cos I was too busy playing footy with the kids, and because I was scared of girls. And because I was scared of girls she figured I just didn’t like her. We both worked at several centres and knew most of the staff and started going to trivia nights, these were good fun and allowed people to get to know each other. One night my centre manager asked if I wanted a beer, I declined, Brianna asked why, I told her ‘I just don’t’.

She persisted, ‘there has to be a reason, like pancreatitis or something.’ I told her I had a brain tumour, some people at the table knew, others didn’t. Bri, being who she is, managed to carry the conversation on without appearing too awkward.

In December of 2005 we became boyfriend and girlfriend, moved in together 6 months later, and months after that, on my 23rd birthday we got engaged! I cried several times, like 6 times I think.

The tumour carried on being monitored by MRI, I kept taking my medication (mostly) and we both kept studying and wedding planning. I also had another crack at Rugby, with a different team and was going really well, I was happily playing in the centres for 3rd grade, and then at training one night I got told I’d be playing 2nd Grade the coming weekend. I was pretty excited! As I was riding to training on the Thursday night I got hit by a car! It wasn’t too serious, no breaks or cuts, just some bruises, initially. A couple of days later I could barely walk, a visit to the chiropractor revealed a bulging disc. Unfortunately that ended my season. 4 weeks later Bri & I were on our way to Canada, England & Italy on a pre-wedding honeymoon. When we returned the season was at its end and I didn’t dare risk my back by returning. Without knowing it at the time, I’d played my last game of Rugby.

I had my last exam for university on the 2nd November. The day after, We got married! Everything was going great. We had bought a house, I had commenced working as a personal trainer and was building a veggie patch and a little ducktopia in our small backyard. Overtime I had started having annual scans, and they usually coincided with Christmas, so I would usually get a bit edgy at that time of year. Its important to remember that the tumour was never fully removed and it had been monitored for growth or changes since the surgery in 2003.

The scan I had at the end of 2007 looked like all the others had, possibly a bit bigger, but the radiographer had made a note that there was a slight enhancement within a section of the tumour which could be indicative of more rapid growth. My original surgeon thought it was fine to continue monitoring but encouraged us to get a second opinion. So we did. We met with a Dr at the Canberra hospital who was doing awake craniotomy’s, the idea being that he could get as much tumour as possible without damaging essential brain tissue. He also made a point of saying that ‘it’s there, and it shouldn’t be.’ So we made the decision to proceed with surgery which would hopefully eliminate most, if not all of the tumour.

I arrived at the hospital with a bag and a grin on the morning of the 28th Feb 2008 (about 4 months after our wedding). The nurse on the ward reception looked at me puzzled when I told her I was there to ‘check in’. She questioned whether I was on the right floor and proceeded to look through her notes. She commented that I didn’t look like I needed to be there before commencing paperwork. They didn’t have a bed ready for me on the ward so I spent the evening in the abdominal ward before being collected for surgery in the morning. I choked up once again when mum and Bri waved me off into theatre but again it didn’t last long, I was feeling pretty confident given how well it went last time, and there was no fear or apprehension. They challenged me to count to 100 and I was off!

I remember them waking me up during the surgery. They asked me who I was, where I was and asked me to perform a couple of hand movements and that’s all I know. 

When I woke up Mum and Dad were there holding my hand, talking gently. They said I had taken longer to wake up than the doctors had expected me to. They asked me if I was hungry, I wasn’t really. Then they started telling me that everyone else was outside but they would only let three of them in to the ICU... I asked who the third person was They said ‘Brianna, Tom, she’s over there, and pointed to the other side of my bed... I turned my head, and there she was stroking my arm, problem was, I couldn’t feel it, and the other problem that I quickly realised was that I hadn’t been lying on my right side, as that was the side of the surgery, I had been lying squarely on the back of my head, so by rights, I should have been able to see Bri without turning my head!
I was immediately concerned! I couldn’t feel my left arm and I thought I couldn’t see out of my left eye! I could move my arm but it was terribly uncoordinated and really had no feeling to it. My parents called a nurse over and told them what was going on. The nurse fetched the doctor. I was feeling quite agitated and distressed and pulled a couple of my canulas out, and the catheter that was still in. The doctor initially said that I probably had some swelling that was causing the symptoms. The symptoms were confirmed as a Hemianopea (loss of vision through the whole left side of each eye) and left sided neglect (my brain wasn’t recognising the left side of my body).

I got worse over the next day or so and developed a super high fever. On the second day after surgery i was taken for a CT scan which showed what looked like an infection. I don’t know the order of things because I was pretty out of it but over the next few days I had a spinal tap, morphine injections and a second operation to wash out the infection. Unfortunately the infection had gotten into the bone that had been removed during surgery and it had to be discarded (this was a portion of skull roughly the size of the palm of my hand). It had also gotten into the protective linings of the brain/head causing meningitis. I was a bit of a mess.

I had antibiotics through a drip line to try and clear it up but the fevers continued so they went in again to clear out the surgical bed. I remember thinking to myself before going in for this second clean out “I’ve had enough”, “I give up”. It was too much for me, it wasn’t meant to be this way. My whole body was in pain, I was weak and there was still this third surgery in eight days to go.

In the end I didn’t eat much for about ten days straight and the fevers had caused my previously healthy and muscular body to waste away, I had lost 10 kilos. I remained in hospital for another 10 days. This was hard, and it wasn’t fun at all. At one point I had to have a drainage tube pulled out of my head and I swear this was the most painful thing I have ever experienced, I cried like a little baby. I was broken.

I was finally allowed to leave hospital. I had entered as a happy, strong, fit Personal trainer weighing 82kg, I left 18 days later weak, sad, half blind, weighing 72kg with an arm I couldn’t feel or control and a quarter of my skull missing. I apparently didn’t have a brain tumor anymore though so that was something.

I spent the next 3 months relatively housebound and under constant supervision due to the fear of me damaging my brain because of the missing skull. I had Occupational therapists visit, someone from the guide dog association and probably some other people. I hated going anywhere in the car as every time we went round a corner I could feel my brain shifting. I was pretty down in the dumps. Finally it was time to have a titanium mesh plate installed in place of my skull. Unfortunately it meant surgery again.

Once the surgery was done the physical things began to improve due to the extra stability the plate provided. My eyesight began to improve, my left side began to operate better. Unfortunately my mental state was stuffed. I returned to some fairly basic part-time work and soon after got a full-time job. My mental state continued to deteriorate. I was still unable to drive and still had a visual deficit. After trying to leave home one evening I called the police when Brianna took away the car keys. A couple of days later, instead of catching the bus to work I rode my Bicycle to Murrumbateman (about 40kms) because it seemed like a good idea. I realised at this time I needed help and went to my GP, severe Depression and Anxiety was the diagnosis.
I overcame the depression, as did my marriage. My eyes improved to where they are today which is a lower left quadrantinopea ( no vision in the lower left quadrant of each eye). I was given approval to drive again, and my left arm is a bit uncoordinated these days and my fingers have their moments but I can’t complain. I now have two beautiful children, Jasper (5) and Grietja (3) who are my light and my motivation.

The only downer is that the tumor has returned and now sits in the motor cortex. I had a Biopsy in 2014 to confirm this and have been on oral chemo ever since one week on, three weeks off, which isn’t so bad.

We became aware of the Mark Hughes foundation when Carrie Bickmore donned her beanie at the logies, I have always been an admirer of Carrie with the way she dealt with her husbands illness and death, so when it was time for beanie week and beanie day we hoped to do our part to raise awareness and funds.

My battle will probably be a forever battle, one that my children will eventually be aware of. While the tumor is in a terrible spot as far as surgery goes, the nature of it means that time is on my side. The chemo has halted it’s growth so I will continue this treatment and constantly look at other options that not only treat the disease but leave me as able as possible so that I can enjoy my life with my kids.