Jeanette Lau Gooey

‘Ride Like A Girl’ and my cancer journey

November 4, 2020

The following review of ‘Ride Like a Girl’, a movie about Michelle Payne’s challenge as a female jockey to ride in the Melbourne Cup horse race, was written by Jeanette Lau Gooey. Jeanette was diagnosed with Breast cancer in 2010 and then in 2013 with Gastro-Intestinal Stromal Tumour (GIST). Jeanette sadly passed away in June 2020.

Below is her own reflections on her cancer journey – written at the end of 2019 …

I have to admit that when I decided to go to the Mt Himlung Gutsy Challenge fundraiser for gastro-intestinal (GI) cancer research, I wasn’t interested in seeing the movie ‘Ride Like A Girl’. Horse racing isn’t my thing.  The only time I’m interested is when the Melbourne Cup comes around on the first Tuesday in November & I have a ticket in a sweep.

I went to the Movie Night fundraiser to support my amazing oncologists Professor John Zalcberg and Associate Professor Lara Lipton who are treating me for Stage 4 Gastro-Intestinal Stromal Tumour (GIST) – a rare GI cancer that can affect multiple areas of the digestive system.   Both of my oncologists are actively involved in the research and community based activities of the GI Cancer Institute.

So I guess you’re wondering why I’m writing about a movie that I wasn’t interested in.

The film is about the jockey, Michelle Payne and her fight to fulfil her dream and win the Melbourne Cup.

The word “fight” is a word I often use to encourage my family and friends who have been diagnosed with cancer.   However, last year was a horrific year for me and I began to question what the word “fight” really means. For a cancer patient it is the fight to survive.  For the team climbing Mt Himlung, it is that quality that will drive them to reach the peak.

I came to the conclusion that to fight takes courage, determination, perseverance, being proactive and patience.

For me the narrative around Michelle’s journey in Ride Like A Girl is a journey that is similar to mine, a story that intersects in many ways.

Courage

Courage is the strength to overcome difficulties, even when you are afraid.

Jockeys regularly face serious injury and after being thrown from a horse during a race, Michelle sustained a fractured skull, bruising to her brain & loss of short term memory.  Her recovery was long & arduous but Michelle’s courage gave her the strength to overcome her injuries and race again.

Cancer treatment can be painful, difficult and frightening.  We face side effects that affect our quality of life.  Since 2010, I have undergone five operations for cancer.  Recovery time was approximately six weeks.  Movement was slow, painful, restricted and exhausting.   It would have been easy to give up but I had to have the courage to keep going under the knife even when it wasn’t appealing.   The end game was and still is to survive.

Determination & perseverance

Determination is the drive to achieve something whilst perseverance is the effort required to achieve it despite the difficulties that may be faced.

Michelle faced setbacks from injury and prejudice as a female jockey in a male dominated sport.  Constantly ignored by trainers she would arrive at the track in the early hours of the morning in the hope of being given the chance to ride.  Her ability was finally recognised but only after she led one of the riders to believe she had authority to ride on the horse he was responsible for.  Even then, it would take much more determination and perseverance to fulfil her dream of riding in the Melbourne Cup.

Like Michelle, the journey of a cancer patient can be long and arduous.  It is nine years since I started my cancer journey and there is still a long way to go.  Something drives our determination and the will to persevere.  Michelle’s goal was to win the Melbourne Cup.  My motivation is to survive and live to continue to make lasting memories with my family and friends.  These are the people that love and support me through the good and bad times.  As in Michelle’s story these are the people who also suffered greatly, helplessly watching as we went through sometimes agonising treatment.

Proactive

Being proactive is taking control and making things happen rather than waiting for things to come to us.

Michelle could have stayed on her father’s farm to ride for him.  Much to his dismay she left the family farm at the age of 15 to pursue her dream.  There are many examples of Michelle being proactive but my favourite was Michelle sitting in her car somewhere in the middle of nowhere mapping out the quickest routes to various race tracks to maximise her rides in a limited amount of time and still make it to her sister’s wedding.

My oncologists actively monitor my cancer with blood tests and scans.  They use various treatments to manage my cancer but treatment is a two way street.   A simple way I can be proactive is by eating sensibly and exercising in an effort to maximise the effectiveness of my treatment.  For me, it is also about taking an active interest in my cancer by making sure that my oncologists are aware of any problems that have occurred between appointments and answering any questions that I have.  Keeping a diary and writing notes to take to appointments ensures that what I want to discuss is covered. Hopefully this assists in a better understanding of how to treat my cancer.

Patience

Patience is the ability to endure difficult circumstances over a prolonged period.

This is something Paddy, Michelle’s father, tried to instil in her.  To win a race you need to be patient and wait for the right opportunity.  Patience was a key element to her winning ride in the 2015 Melbourne Cup.

This is the biggest lesson I have had to learn in my cancer journey.  During 2010, I was diagnosed with Stage 1 breast cancer and to date this has not returned.  However, in 2013, I was diagnosed with a GIST (gastro intestinal stromal tumour).  Until 2018, treatment was a combination of drugs and surgery.  However, in July of last year the drugs I had been taking ceased working and surgery was not an option.  There were two other drugs used for treating GIST but by mid-December the remaining drugs had failed.   It would have been a bleak Christmas had I not been granted access to a new trial drug.

When diagnosed with cancer, we want to see immediate results.   From my experience, it may take at least three months for the treatment to take effect.  The progress of treatment is monitored through regular scans.  However the wait between scans can cause stress and anxiety so learning patience can help overcome this issue.

For me, the need for patience is heightened as it takes time to stabilise the cancer even though I have been on the trial drug since the beginning of this year. This is something that I cannot control so remaining patient has now become a way of life for me.

But I am still here and have a good quality of life.  I honestly didn’t expect to be here, going to the movies to raise funds for research and telling my story. I owe a lot to my medical team, Professor Zalcberg and Associate Professor Lipton and their commitment to my care. Their actions to help their patients, including undertaking remarkable fundraising gutsy challenges like climbing Mt Himlung, just demonstrates the dedication of the oncologists and clinicians who are part of the GI Cancer Institute. They go above and beyond in their search for answers and better outcomes.  Thank you so much.

If you would like to help support new critical research in to improved treatments for GI cancers, like GIST, please click here to donate (all donations are directed to research and no matter their size do make a difference – providing much needed hope for those diagnosed).

 

Jeanette Lau Gooey and Lara Lipton

My cancer journey and what it has taught me

January 23, 2020

On the 9th November a bouldering (a form of indoor rock climbing) fundraiser was hosted to raise funds for the Mt Himlung Himal Gutsy Challenge.

Jeanette developed the following story based on her cancer journey and its parallels with the fundraising event. This was the second article she wrote to support A/Prof Lara Lipton and the Mt Himlung Himal Gutsy challenge.

Like the cancer journey, bouldering is full of challenges, highs and lows.  However, the importance lies in what you learn from these experiences.

Bouldering can be challenging even though the walls are normally no higher than five meters.  Depending on the angle of the wall and where the climbing holds are positioned can determine the difficulty of the climb. Regardless of the difficulty, the level of the challenge will be different for each person.  Some will find a climb easier whilst others will find the same climb more challenging. Watching the children climb every inch of wall to reach the top you would think climbing was easy. For me, a cancer patient who is not in remission, the challenge would have been far greater even on the easier climbs. I would have to try to find the easiest and safest climbing route without falling. I realised that a fall was probably not conducive for cancer so I would have to sit this one out. Cancer patients constantly face challenges such as the treatment required to rid the body of cancer, recovery from treatment and returning to some form of normality during and after treatment.

Each patient’s challenges will be different and may be dependent on the type of cancer they have been diagnosed with. For instance, treatment for my cancer, GIST, consists of surgical removal of tumours, radiotherapy and oral drug therapy. Chemotherapy is not used for treatment of GIST which is lucky for me given its side effects.

Whilst I have undergone all available treatments for GIST the biggest challenge I faced was when all available cancer drugs ceased to be effective. This meant surgical removal of tumours was no longer an option due to active cancer cells in my body.

However, I consider myself lucky as my challenges seem insignificant when I think of those who are undergoing intensive treatment for late stage cancer and those experiencing terrible side effects from treatment.

Becoming an experienced climber comes from continual practice and learning from the challenges, highs and lows along the way.

After nine years of challenges, highs and lows the saying “You have to go through the bad times to learn” rings true. The fight to survive brings out strengths that you never knew you had. This may sound very strange but the cancer journey has made me a better person.

So what has my cancer journey taught me?

  • When things get busy and the pressure mounts stop take time out to appreciate the simple things in life such as the warmth of the sun, a clear blue sky, the sound of a breeze rustling through the trees. Don’t take them for granted.
  • Money pays the bills but family and friends are more important in your life. These are the people who support you through the good and bad times and with whom you make happy and lasting memories. They also suffer with you but it’s even more difficult for them. The only way I can describe it is that it’s like there is a glass wall between you. They see what is happening but can’t get close enough to feel what you are actually feeling.
  • Spend time with people who don’t wrap you up in cotton wool but treat you as “normal”. You only have one life so you need to live life to the best of your ability. I am extremely lucky to have a group of girlfriends called the “Girlie Bunch” who are always there for me and treat me like everyone else and most importantly make me laugh.
  • Regardless of whether something has gone wrong or it’s a horrible day weatherwise it still is a good day for me. Each extra day that I survive brings me closer to the possibility of a new and better treatment for cancer. For example, when I ran out of options in 2018, Prof Zalcberg gave me access to a trial drug that is still keeping me alive.
  • Looking at cancer as a chronic illness rather than a death sentence. When Lara, my oncologist, gave me the news that I was Stage 4 all I could think of was how long before I die. Lara took the approach that we treat the cancer as a chronic illness and see how things go so no timeframe was given. I am so grateful to Lara for taking this approach as it took a lot of pressure off me psychologically and allowed me to focus on fighting the cancer.
  • Diet can help with the cancer treatment. During the past 9 years, I gradually became aware of the benefits of making changes to my diet.  These changes aided in speeding up recovery time after operations & ridding me of the constant abdominal bloating & pain that had plagued me over the years.  Whilst diet can assist with your wellbeing & how you feel, it does not mean that it is curing your cancer.  You must continue the cancer treatment recommended by your oncologist.
  • Having access to a trial drug makes me realise how privileged I am as trial drugs are not available to all cancer  patients. I know how frightening it feels when you are running out of treatment options.  Therefore I have a responsibility to help in process to have trial drugs approved in Australia so they will be accessible to all cancer patients.

 

The Himlung Gutsy Challenge team

The Himlung team will no doubt face many challenges, highs and lows on their ascent of Mt Himlung. This will be no mean feat as Mt Himlung is 7,126m high and only a handful of teams have made it to the peak since its opening in 1992.  It will take the team 28 days to make the ascent. Not only will the team face extreme cold but also the risk of serious illness or worse. This is a high price to pay to raise funds for the GI Cancer Institute Innovation Fund.

So why is the Innovation Fund so important? It provides funding for new cancer research that will lead to better treatment for GI Cancer patients. It is the precursor to the Institute’s clinical trials in Australia. Trials in Australia provide access to new treatments much earlier than in the past.

If you would like to help support new critical research in to improved treatments for GI cancers, like GIST, please click here to donate (all donations are directed to research and no matter their size do make a difference – providing much needed hope for those diagnosed). Should you wish for your donation to be directed to the Innovation Fund grant in particular please just note as a comment when completing the donation form.

 

How does teamwork relate to cancer?

March 11, 2020

What makes a winning team?

Trivia Nights are all about groups of friends, families or workmates getting together and pooling their knowledge in an attempt to outdo competing teams and win.

When I asked a group of my friends to come to the Trivia Night, I never expected that we would have any chance of winning. You can imagine my surprise when our team, LGM and Friends, won the Trivia competition.

How could this be when there were so many teams consisting of specialists in the oncology and medical research fields? Could it be that some of my team had a misspent youth watching old TV series, like “Bewitched” and “The 6 wives of Henry the VIII”, reading gossip magazines, watching too many TV ads, listening to 80s music when we should have been busy studying at university?

Trivia is a game where each person in the team has a knowledge in a particular subject. It may be extensive or quite limited but sufficient to cover a range of questions. However, it takes teamwork.  Teamwork is the ability to work together, to communicate with each other and the ability to encourage and nurture those team members who feel that they are unable to contribute anything of value.

Thinking back to the Trivia Night, I realised that we had an ideal team. Various members had university degrees, extensive industry experience in business and finance, a misspent youth or extensive overseas travel. However, our most powerful weapon was two Year Eleven students named Lucy and Molly.  Admittedly we thought that their specialty would be to answer those “young people” questions about texting and the latest kid’s movies but they surprised us with the extent of their knowledge, maturity and ability to easily communicate with a group of oldies whose ages ranged from 50 to 70 years of age.

So how does teamwork relate to cancer?

Cancer research, treatment and trials require specialists from many different disciplines.  These include doctors, nurses, oncologists, dietitians, radiologists, surgeons, research scientists and a raft of other specialists.

Each individual brings a different level of knowledge and expertise to a team. However, a cohesive team requires good communication, listening to other’s opinions, encouraging new ideas and making decisions based on the expertise of all members. Teamwork is also about more experienced members mentoring and nurturing others in an effort to develop their full potential and become the future leaders of medical research and treatment. This leads to better treatment of patients.

Is there a role for the patient on this team?

After living 18 months with tumours that have grown and spread throughout my body the answer is yes. During this time, my trial drug has managed to stabilise my cancer and given me the ability to lead a normal life.

Having access to a trial drug is a privilege as many others will not be able to do so. Some may also die before the drug is formally approved by Australia’s Therapeutic Goods Administration (TGA).   Even then the cost of the treatment may be beyond the reach of the average cancer patient. The financial burden will only be relieved when these drugs are subsidised under the Pharmaceutical Benefits Scheme (PBS).

In my view I have a responsibility to help these patients.

I am able to communicate how these drugs affect me from both a psychological and physical aspect. The more information I can convey to my medical team, the better the understanding of potential treatments.

I am well aware that my life now depends on trials to keep me alive as I doubt that I will ever go into remission and that’s okay. Even if a trial is successful in managing my cancer for a short period of time it gives hope that another trial may come along and continue to keep my cancer in check.  When that will end nobody knows but until that day comes, I will take every opportunity to be part of the research that will save someone else’s life in the future. My hope is that this will inspire others to do the same.

The GI Cancer Institute is involved in research for new innovative ideas and trials that will lead to better treatments for patients.

However, in an environment where demand for government funding is very competitive, it is difficult to obtain funding for the types of cancers that the GI Cancer Institute specialises in. This means that the Institute must fund both their Innovation Fund Grant and trials through sponsors or the generosity of the public.

The funds raised from the Gutsy Challenge support the Innovation Fund which provides grants to researchers who are finding new treatments in rare, neglected and low-survival GI cancers.

 

In Memory

Prior to her passing Jeanette expressed a wish that her story continue to be shared to raise awareness and ensure continued support clinical trials to find better treatments for people with GIST and other gastro-intestinal cancers in the future. If you would like to help support new critical research in her memory please click here to donate (all donations are directed to research and no matter their size do make a difference – providing much needed hope for those diagnosed).

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