My cancer journey and what it has taught me

This story was provided by Jeanette Lau Gooey, a stage 4 cancer patient who was diagnosed in 2013 with a Gastro-Intestinal Stromal Tumour (GIST). Since diagnosis she has been under the care of Associate Professor Lara Lipton. Treatment consisted of surgical operations to remove tumours and a drug called Glivec. In July 2018, things took a turn for the worse. The drug that had kept her cancer under control ceased to be effective. There were only two other drugs available to treat GIST. One by one, Jeanette was treated with these drugs. Within a space of five months both these drugs had failed to control her cancer and in the week before Christmas 2018, all treatment options available had been exhausted. However, clinical trials for a new drug for treatment of GIST were underway. A/Prof Lipton was able to refer Jeanette to Professor John Zalcberg to obtain access to this trial drug. For the last 12 months Prof Zalcberg has been managing Jeanette’s treatment using the trial drug.

Both Prof Zalcberg and A/Prof Lipton are active members of the GI Cancer Institute. Prof Zalcberg, OAM, was a founder and is a sitting member of our Scientific Advisory Committee. A/Prof Lipton is a member of the GI Cancer Institute’s Upper GI Working Party and part of the Gutsy Challenge team who will climb Mt Himlung Himal to raise funds for the GI Cancer Institute’s Innovation Fund.

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

jeanette lau gooey and lara lipton
Jeanette with her oncologist, A/Prof lara Lipton

 

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.

The Himlung team consists of Professor Niall Tebbutt, Dr Matt Burge, Associate Professor Lara Lipton, John Deadman, Dr Simone Steel, Jason Long & Jasmine Lipton. If you are a patient of any of the team or know any of them please support them by donating to their fundraising page.

Thank you to Associate Professor Lara Lipton & Professor John Zalcberg for looking after me.   The gift of life is priceless.

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