Fear, Challenge, Pain and Joy – Conquering Cancer

A pink sunset over choppy sea

“You don’t have to find out you’re dying to start living.”
―Zach Sobiech

There was really no choice. In the next room the skill of a complete stranger was going to determine whether or not my young son would have quadriplegia. If left alone the 2 1/2 cm intra-spinal nerve sheath tumour would continue to compress his spinal cord further and paralysis would be complete within a few weeks. It was already compressing it by 70%. But the surgery itself could leave him with quadriplegia.

I tried to prepare myself for the worst case scenario. There was no time to feel. How would I tell my son that he was permanently paralysed if the surgery went badly or explain what further treatment was needed if it was malignant? He had trusted me as I handed him over to nurses to be prepped for surgery and I felt like I was betraying him. I did not tell him the possible outcome, only that he needed to have the tumour removed because it was going to keep growing. Perhaps I was wrong but I saw no reason to terrify him just before the operation when no-one knew for certain what would happen.

The Little Professor a few months before his operation.

The Little Professor a few months before his operation.

People complain how time drags on when you are waiting for an operation to be over but this time the minutes passed far too quickly. I didn’t want to know if my son was permanently paralysed. A nurse called me into the recovery area to be with him and the first thing he cried out was, “Mummy, I can’t move my legs!” I felt the cold sickening steel knife of fear in my chest but thankfully his lack of sensation was only due to the effects of anaesthesia and quickly wore off.

A beaming female neurosurgeon with a strong Swedish accent told me that Dr R had taken over during the procedure. A week before I had been devastated to learn that Dr R, the highly renowned neurosurgeon who had been seeing my son, wouldn’t be the one performing the operation because he was a private specialist. He reassured me that the public hospital surgeon was highly qualified but I was left with many doubts and fears.

However, in the end he supervised the delicate surgery and took over at no cost to us and the outcome for my son was better than anyone predicted. Apart from some residual reflex damage in his lower limbs, an odd walking gait and a tendency towards back pain, the operation appeared to be a success. He would still need regular MRI scans until he was an adult to make sure the remnants of tumour didn’t regrow but the future looked far more promising than it had before the operation.

In fact, as he grew, the residual tumour disappeared completely and he regained most of his normal movement. And the little boy who coped with years of niggling back pain, and was teased because he walked strangely and couldn’t play contact sports became a strong, healthy, six foot young man who is now completing a PhD in cognitive neuroscience.

We were extremely thankful to have such a positive outcome but many parents are not so fortunate. It was a very stressful time though with our car being stolen from the hospital car park and crashed, my much loved brother having died suddenly a couple of months before, and my baby daughter having an unexplained seizure. We lived in a remote outback area and the cost of staying in Brisbane accommodation depleted all our available cash. I was breastfeeding my baby daughter and to this day still can’t remember much about her first year of life. But in the end, I couldn’t have asked for a better outcome for my eldest son. Our experience was one of the reasons behind me participating in the Ride to Conquer Cancer in 2012.

I’d been interested in buying a bicycle to improve my fitness and reduce fuel costs. Friends encouraged me to take up cycling but as you do when you are a parent with bills to pay, I placed it low on my list of priorities. I hadn’t ridden a bike since I was 14 and it was an over-sized ancient second hand rust heap with no gears. It did the job though. People weren’t “cyclists” back then. They were just people who rode bikes. Most children had bikes. There were no helmet rules and the only Lycra we really talked about was for 70s disco outfits and 80s leggings!

I noticed a competition being run by a bicycle company that involved sending a supportive message to a long distance rider who was raising fund for the Royal Flying Doctors which services remote regions. I admired what he was doing and was happy to send off a message but quickly forgot all about the competition aspect…

Weeks later I had a frantic call from the PR person for the cycling company. The cyclist had chosen my message as being the most inspirational to him while he was riding and I had won a beautiful racing bike. I hadn’t replied to their emails and they hadn’t been able to get me on the phone. I remember seeing emails from the company but had ignored them, thinking they were the typical promotional spam you get when you enter competitions. Hyperventilating, half crying and half laughing, I could barely reply to the caller’s questions. After hanging up the phone I started to offer the prize to my children but they wouldn’t accept. “It’s time to do something for yourself now, Mum!”

After looking up the prize online I actually started to panic. It looked so intimidating –the model was higher than an entry level racing bike, with a carbon frame and good quality Shimano gears. It didn’t look like any bike I had ever ridden. And the retail value was over $2500, more than my ancient car! The day came to pick it up. That’s when the first problem occurred. I awkwardly mounted the bike and lowered myself onto the seat so the assistant could make the necessary adjustments. I wanted to leap right off then and  there. Could they possibly make a bike seat resemble a torture device any more than that one! No springs and comfy cushioning like in “the old days”. Even my own generous natural “padding” couldn’t protect me from its rock hard “protrusions”! I also didn’t have a bike rack on my car to transport it home. “No worries,” he said. “The front wheel just comes off and we can put it in the back seat area.” The wheel just comes off easily? That didn’t sound safe! Cyclists will know by now that I knew very little about modern racing bikes!

The Little White Lion (yes, I broke the rules of modern cycling immediately by giving it a name) sat in the corner of my lounge room for a month before I could muster the courage to try it. And I still didn’t know why I even needed gears.  But in the end it was easy. It was such a beautiful bike and it gave me the sensation of flying. The addition of padded bike pants and a new seat removed the sitting pain. Riding down our street for the first time gave me such a sense of exhilaration and freedom that my jaw ached for a couple of days afterwards from all the smiling. I’m sure I swallowed a few flies in the process.

Smiling and ready to swallow some flies on a ride.

Smiling and ready to swallow some flies on a ride.

Several weeks later, after riding what felt like a “colossal” 10km, I sat staring at the entry form for a major charity group ride that raised awareness and funds for cancer prevention, research and treatment. Each participant was required to raise a minimum of $2500. The previous year over 1000 riders raised around $ 4 million for the Queensland Institute of Medical Research.  The course involves some winding hilly areas and city traffic from the UQ campus at St.Lucia to Wivanhoe Dam, south-west of Brisbane and back again. About 220 km would be squeezed into one weekend. The minimum fundraising amount equaled the retail cost of the bike so in my mind it was a way to repay the gift of winning the bike.

It was just past midnight and I took the plunge and registered online. It was one of my “Mildly-Extreme” spur of the moment decisions. My family were rather shocked but very supportive. I immediately became terrified!

The next few months involved me increasing my cycling distances until I was riding up to 400km in a week. During this time I discovered the “joys” of learning how to use clip-in pedals and how many objects people throw out of their car windows, particularly glass bottles! I caught whooping cough several months before the event which damaged my lungs and I developed anaemia, necessitating a 6 week break from cycling. And then in another one of my “Mildly Extreme” moments, I went motorised go-carting for the first time with my brother, resulting in a minor accident – whiplash and soft tissue damage to my lower back, 6 weeks before the cycling event. Then my left knee decided to retire because I had been using the wrong cycling action.

In the meantime though, friends, relatives and strangers had been extremely generous and donated $3000 towards my charity ride, which really was the main point of it all. Many wanted to donate in the names of people close to them who had died, were going through treatment or had survived. Some had recovered from or were fighting cancer themselves. I couldn’t back out now even though I really didn’t think my decrepit body could do it.

Sun sleeves with the names of cancer victims and survivors.

Sun sleeves with the names of cancer victims and survivors.

The event day came and it was a chilly August start at the University of Queensland. With over 1500 riders, the pack was huge. I remember one of the pre-ride speakers who was a cancer sufferer giving an extremely inspiring speech that left me in tears. I didn’t have cancer, so what was I afraid of? A lot actually! I was still terrified of being knocked off my bike by a car or being involved in a pile up with other riders. I decided the best course of action was to start right at the back of the pack. If I had to I would walk all the hills or sections that made me nervous. My knee was still swollen and painful.

Early morning start at the University of Queensland.

Early morning start at the University of Queensland.

I need not have been concerned about traffic though as after a couple of hours the pain from my knee had me wishing someone would just run me over. I no longer cared! Only having pain to focus on took away my fears of anything else and it became a matter of just turning the pedals and focusing on making it through the next 10km section. I never thought I would be so grateful for pain. Well, I wasn’t at the time but in hindsight it was the best thing. Something I had worried about for months – the traffic – was no longer an issue for me.

There was a shocking headwind on the first day and even serious riders struggled on the Centenary Highway between Springfield and Yamanto. I’d been looking forward to that stretch as it had wide safe edges and I’d ridden it often, so despite the wind I enjoyed the sense of familiarity. Further along though, on a short sharp hill, I lost concentration and fell over. I wasn’t quick enough at unclipping my shoes and managed to damage my other knee. At least they were now balanced in pain! In my fuzzy mental state, I didn’t notice that my brake pad was slightly jammed on the wheel rim after the fall which made the climbs up the Pine Mountain area a little more challenging. And I had just thought I was just struggling with the inclines.

Head down and focused on just turning those pedals in the strong head wind.

Head down and focused on just turning those pedals in the strong head wind.

Along the way I saw the yellow flags of riders who were cancer survivors or currently under treatment. I was reminded that the pain and vulnerability I felt was nothing compared to the fear, vulnerability and insecurity of a cancer sufferer. It was only two days of cycling for me after all, and I chose to do it! People don’t choose to get cancer. It also helped me to look down and see the names of cancer battlers I had written on my sun sleeves. The enthusiastic supporters waving placards along the way spurred us on also.

The Little White Lion was valiant...

The Little White Lion was valiant…

My brother was a wonderful support.  I felt quite emotional seeing how excited he was about his big sister doing this. He said he was now eager to do an event like this himself. In fact, he later bought a racing bike and a mountain bike and is now a cycling addict.

My brother was a great support.

My brother was a great support.

That night, my knees were extremely swollen with one resembling a melon. I wondered if I was risking permanent injury by continuing the next day but decided to think about it in the morning. The next day after plenty of ice treatment the swelling had decreased a little so it was off again for the return trip. I really don’t remember much about the rest of the ride except that I left my gloves with my brother at a pit stop and got sweat blisters on my hands.  As I crossed the finish line on my own, I burst into tears.

Thrilled to be finished!

Thrilled to be finished!

The things I was most afraid of had not eventuated. The pain of my knee made me oblivious to the dangers of the traffic and the pack of riders. The nerdy non-sporty girl had finally done a public sports event. It made me wonder what other things in life I could do that I’d never thought possible. In doing something that I thought would benefit others I ended up benefiting hugely in return.

In the 2012 Ride to Conquer Cancer, 1,519 Riders raised over $5.2 Million for the Queensland Institute of Medical Research (QIMR). I was extremely grateful for the donations that were given on behalf of my own ride. Many of my acquaintances and people living in my area were also participants so it wasn’t as easy to raise the funds as we’d hoped but people were still extremely generous though.

Life has changed a little now. I am no longer able to ride like I used to as I’ve discovered my anatomy requires a different kind of bike for long rides. I also have rheumatoid arthritis in my hands and wrists which affects my grip on the drop bars.  I miss my long rides a little but I also love hiking. A break from cycling until I can get a more comfortable bike has spurred me on to start this blog, something I’ve wanted to do for a long time but was also a little afraid to start!  Once again though, my fears were unfounded and I’m now enjoying it.

I’ve always been a fan of the saying, “When is the last time you did something for the first time?” There are many ideas we can try to get out of a rut. It can be  as simple as trying a new book author, or a different flavour of tea. It doesn’t have to be epic. Paul Kelly sings, “From little things, big things grow.” When I feel overwhelmed by the suffering, cruelty and greed in the world, I try to remember that a tiny fragile seed has the potential to become a towering tree. Small actions can make a big difference and we as individuals are not powerless. Sometimes I need a lot of reminding though…

Walking straight and tall now, my son ans his sister on a hike at Springbrook.

Walking straight and tall now, my son and his sister on a hike at Springbrook.

17 thoughts on “Fear, Challenge, Pain and Joy – Conquering Cancer

  1. wow! Jane your story blew me away!! How courageous you are, and how determined. I love hearing such motivational stories like yours that show how every day people can overcome huge obstacles and still end up achieving so much. Your story made me laugh and cry all within minutes. I admire you and your power within ever so much. Thanks for sharing such an amazing journey, and I can only hope that good things come your way, now and always! 🙂

    • Thank you for your lovely comments, but you give me too much praise really! My son has been the really determined and brave soul. I am so very glad you enjoyed reading my story and it touched you though. I was very nervous about writing something so personal, but I thought perhaps it may encourage someone. Thank you for such a heartwarming response and your kind wishes! I am overwhelmed. 🙂

      • I used to ride a bit around Brisbane. Always had a mountain bike though – never a flash road bike like yours!
        I’m also a little familiar with the roads between UQ & Wivenhoe. For a time i caught the college bus between the St Lucia to Gatton campuses, and driving out that way (over the range or up from the Warrego Hwy) is a good day out, too.
        I can imagine it was quite a challenge – even if your knees were not playing up – and I admire your spirit and dedication to see it through.

        • Thanks Dayna. They diverted us off the main road and took us through Pine Mountain, with winding roads, blind corners, double lines and no edges. It was what I was most afraid of but luckily my painful knee took my mind off being flattened by a car. 🙂

          I was lucky to have such a great bike. I actually can’t imagine doing it with a mountain bike. I needed all those nice flash gears and super smooth road action. I actually saw a super fit guy doing it on a hired city-cycle with only 3 gears though!

          I will probably get a comfortable vintage style upright ladies bike with a basket for shopping/chores or a fold up bike to take on public transport. I’d love a mountain bike to ride in national parks but I suspect my spine and wrists couldn’t handle the jarring and I quite like the slower pace of walking. My camera does too. 🙂

          • I agree, it would be tougher on a mountain bike. Someone serious did it on a hire bike?! Whoa!
            ‘One day’ we hope to get a pair of Bromptons so we can pack them into the Mini (with all our other luggage) and do some of Victoria’s rail trails. There’s a shop just up the road from us that specialises in folding and electric bikes – whenever we pass we stop and check out the Brompton in the window. Stephen’s researched and found that that brand ticks the most boxes of all the collapsable bikes, so ‘one day’ that’s what it’ll be. Not sure if that’s before or after we get snowshoes.
            ; )

            • I LOVE Bromptons! I’d buy one now if I had the money. They are a bit more expensive but are much more durable and easier to use than other cheaper models. I want one because the Brisbane trains only allow folding bikes on during peak hour times and they would be handy for short shopping trips. They are actually getting very popular with long distance tourers as well. People modify them to suit the conditions. I also love minis. My first car was a 1965 red bomb. It had a starter button on the floor and push out windows and a hole in the floor around the gear stick so I could see the road rushing under me… 🙂

              I think your idea is fantastic and should be done sooner rather than later. I want to see the pics and read the stories! Sounds like a lot of fun. 🙂

              • As soon as circumstances allow, it will be done! Things should only be talked about for so long before they come to pass. Ditto here in Melbourne for taking fold-up bikes on busses/trains/trams in peak hour. I’ve heard that when they’re in a travel bag most people don’t even know what’s being brought onboard anyway!
                Despite occasionally needing a car with 4wd capabilities (or a bit extra clearance!) it’s only ever the very last 0.01% or the drive… I’m determined our next car will be a Mini too. So many people have good memories of the (classic) car(s) and really, our modern one is pretty perfect for our needs. 🙂

    • Thank you, Oanh. I must say that I agonised over whether to share something so personal so I am glad you enjoyed it!

      Oh yeessss, I think many of us have a crush on Bromptons! One day… 🙂

    • Thank you! Yes, we were extremely fortunate to have a good outcome. I wish there was something that could have helped your beautiful boy too. My brother was born with multiple heart defects that led to his death in his 20s. Without world first surgery he would have died as a bub. Life is so unpredictable and sad at times but so beautiful also. It’s a mystery… x

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