26
Jun
2019

Julie's Never2Young Story (diagnosed age 47)

I was diagnosed with rectal cancer in September 2012, aged 47.

I was relatively fit and not overweight. In fact, as I was being prepped for what was to be my first gastroscopy, I was told I was a bean pole (that made me laugh).

I had a very good diet, didn’t smoke, and I drank maybe a glass of alcohol a day. But I was just feeling “tired” and I have never felt tired before.

Frankly, I felt a bit ridiculous seeing my GP about being tired. But I just didn’t feel right within my body.

With my new GP listening (my original GP was dismissive of my concerns) and sending me off for tests, beginning with a blood test (followed by a number due to conflicting results, my tumour would bleed then stop), my tumour was found not much later at the pre-consult for my colonoscopy. The initial diagnosis lead to a Staging of IIIB rectal cancer.

After beginning combined chemotherapy and radiotherapy at Randwick Hospital in NSW, in preparation for my surgery (and to reduce the tumour size), a fortunate number of events led to my surgery being carried out robotically at the Macquarie University Hospital. I think at the time it was the first ultra-low anterior resection carried out robotically in Australia.

From being told (definitely) that I would have either a colostomy or ileostomy bag to not having one, this was one amazing outcome, and a tribute to the skills of both my surgeons and the developing use of robots in surgical procedures.

In fact, all the medical professionals I have and continue to be involved with in both the Public and Private Health sectors have been amazing.

After I was diagnosed, I pretty quickly became aware that the approach to what lay ahead and my attitude to it could potentially have a positive impact on the outcome. This was as I realised how feeling sorry for myself created such a drain physically and emotionally.  

I also decided that I would be a part of “my team” rather than being a passenger. So, it was with this thought process, that I began my adventure to recover my health, (hopefully) while at the same time trying to maintain my sense of humour; I gave one of my good friends the task to help me with that, (which she kindly and I think in shock, accepted) more below on that. Essentially, I wanted to ensure that as much as possible that life went on as normal.

I, for the most part wanted to be the one making the meaningful decisions and seeing what was possible, as opposed to being told what wasn’t possible. This was not easy though, as when I was first diagnosed, I had a visceral reaction to reading anything about what my diagnosis was, what it meant and what the traditional treatment paths were. I often had to push away from my desk where my laptop sat as my body broke out in a sweat and I felt physical ill.

Gradually though this changed, and I think in researching it helped me come to terms with my diagnosis.

It also gave me the confidence to ask questions in the numerous doctor meetings that you attend and at this point I became a part of my team. I also “felt” that positive thoughts with regards to all aspects of the journey would help. I even found myself talking to my tumour politely and encouragingly in the shower every morning, asking it to shrink as I was having my neoadjuvant therapy. I am sure to this day that those talks helped as my tumour did shrink. Happy Days. :-)

When I decided to proceed down the robotic route, I was a bit surprised by the number of people who asked me why I was taking a risk. I was puzzled about people’s perception that I was taking a risk. I had already been told the most likely outcome of my surgery, so in my mind doing anything that could improve that outcome was a positive. And while the surgery might not have been carried out in Australia before and I hadn’t met the surgeon, the surgery had been carried out in other parts of the world and my surgeon was pre-eminent in his field.

What risk was there? And the other positives that would flow on were, minimally invasive surgery that could reduce the length of stay in hospital (and as a flow on effect reduce the load on the hospital system), reduce the body’s recovery timeframe as well as the less likelihood of complications due to the type of surgery. I even had a conversation with one of my oncologists who told me this surgery wouldn’t improve my survival chances. But for me it was never about (just) improving my survival chances but improving my quality of life.

Length of time on earth versus quality of time on this fabulous place seems to be a different equation for everybody.

As far as the friend who helped me keep my sense of humour (Helen) we ended up creating some videos on what we thought (at the time), was a different way to approach the cancer journey. No one really seemed to want to talk about bowel cancer and interestingly most people assumed I had breast cancer when I told them I was diagnosed with cancer. It was close…just down at the other end of the body.

Anyway, we created these video’s and put them on a Facebook Page, please see the link below. I have to say we haven’t done much with them or the page. Having said that, though, our main aim was to "help one person”. To this day we both hope it has or will help that one person.

Your “Never Too Young” awareness campaign really resonated with me. I was initially told that there was nothing wrong with me, (I looked very healthy) and that I was too young to have anything serious, in fact I was told I was most likely feeling like I was as I was probably peri-menopausal, but, this was without any testing. Just looking. We are never too young to be sick (unfortunately), don’t let yourself be dismissed. If you feel there is something wrong, follow your gut instincts, there is really something to be said for this turn of phrase.

To this day I wonder why I am so lucky to be alive.

And, I wouldn’t be, If not for the dedication and ingenuity of so many in the medical profession, the on-going improvements to diagnosis and treatment and the wonderful support from family and friends.


Bowel Cancer... You're Never Too Young

Launched in 2014, Bowel Cancer Australia’s Bowel Cancer... You're Never Too Young initiative was created to provide bowel cancer resources uniquely designed for younger people.  

Offering practical and emotional support for the growing number of young people affected by bowel cancer (and their loved ones), championing what matters most to people living with or beyond young-onset bowel cancer, while challenging perceptions through dynamic campaigning that raises awareness and motivates action in all young Australians.

A highlight of the initiative is Never Too Young Awareness Week  -  a dedicated week during Bowel Cancer Awareness Month that highlights the unique challenges faced by people who are living with or beyond young-onset bowel cancer.

For further details and to become a #Never2Young Champion head to nevertooyoung.org.au

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