Pancreatic Care Alliance

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Personal stories

Mary's Story

On 16th November 2009, pancreatic cancer impacted my life in the most devastating way. This is the story of my father, Con.

My father was a kind, funny, generous and loving man. He was energetic, hardworking and full of life. Like many migrants of his generation, he came to Australia aged just 18. He embraced his new life with a steely determination and a strong vision of a better future. He lived his life with passion, always prioritising his family first. In 2008, the course of his life and that of our family would change forever.

I vividly remember the doctors intent stare as we sat huddled around my father’s hospital bed. Months of persistent coughing and tests confirmed that my father had jaundice and a blocked bile duct. At first, we couldn’t quite comprehend the gravity of the situation. We simply thought that it could be fixed and that life would return to ‘normal’. When the doctor quietly murmured the words "pancreatic cancer", we stared back at him in shock. We were about to jump on board a rollercoaster and we weren’t prepared for the ride.

In November 2008, upon advisement of his doctors, my father underwent a Whipple Procedure. Recovery from the surgery was anything but easy. Each day brought us a new challenge, and an insight into this very complex disease. Fed through a tube I could see my father’s vibrancy and zest for life diminish each and every day. He quietly withdrew from all of the people he loved and sat in his hospital bed falling into a spiral of depression that was beyond our control. Physically he was a shadow of his old self. The emotional toll was just as dramatic.

personal-maryStudies had shown that support was integral to a patient’s recovery and emotional wellbeing. The doctors brushed off my suggestion for counselling, misguided in their belief and prehistoric thinking that a man of an ethnic background would not be receptive to it. It made me realise that this disease was misunderstood even amongst the medical profession and stressed the importance of a holistic approach to healing.

Months after the surgery there seemed to be some kind of return to normality in our lives as my father embarked on a slow, steady and yet painful recovery. Visits to the oncologist were approached with trepidation as we anticipated the worst but for a short time at least, received some good news. The oncologist seemed to like graphs and to my surprise, promptly whipped out a life expectancy curve. I was horrified to note a 6% survival rate after 5-years. Not surprisingly I didn’t jump up and down with joy.

In actual fact when I conducted further research and compared the 5-year survival rate of 88% for breast cancer and 93% for thyroid cancer, I couldn’t believe the prognosis for pancreatic cancer could be so devastatingly low. I wondered why there wasn’t there more awareness for this disease and more funding for much needed research. I was angry and disillusioned but still determined to stand by my father’s side and fight this battle.

I decided then and there that I would not be deterred by statistics and numbers. I tried to fill my father’s days with hope and laughter, reminding him of his strength and determination that saw him overcome many obstacles in his life.

Early November 2009 my father collapsed at home before being placed in Palliative Care. Exhausted, we held bedside vigils. We never left his side, not even for a minute. Small windows of time gave us the opportunity to share some very special moments with him. Of course this time was gruelling, emotional and difficult. But in times of adversity you find an inner strength you never knew you had. Mother Theresa once said, "I know God will not give me anything I cannot handle. I just wish that He didn't trust me so much."

The toll on my father was excruciating but the impact on my family and I could not be underestimated. Stress, coupled with sleep deprivation saw me have a public meltdown at the nurses’ station one afternoon. As I sobbed uncontrollably, I’m sure they were thinking "Crazy Woman Alert, in room 35." Remember that rollercoaster ride I was telling you about? Sometimes it spinned out of control. But as a carer, you rise to the challenge. You do things you don’t think you are capable of. Sometimes you say things you didn’t know you had in you. You stand up and fight when something isn’t right. You stay by your loved one’s side and hold their hand and tell them everything is going to be ok when deep in your heart you know that you are withholding the truth. You tell them that you are fine even when they tell you to go home because you look tired. You fight the exhaustion, the tears, and the emotions because you know that if you fall apart in front of your loved one, they may fall apart too.

My time as a carer taught me:

  • To question everything and keep persisting with the medical staff to ensure the family is always fully informed and prepared.
  • To establish a support network. Counselling services do exist but they are not always easy to find, however they are an integral part of the coping and healing process.
  • To take some time out to breathe. It is OK to have moments of weakness. We may want to be a pillar of strength for our loved ones but at the end of the day, we are only human.

Finally, the most important lesson of all. Even in our darkest hour, we can never, ever give up hope. Unfortunately, my father lost his battle on 16 November 2009. His valuable life lessons have taught me that the quest for change is not always easy and requires much persistence, hard work and dedication. Having the worst survival rate out of all cancers is not a tag to be proud of. We need to action change and ensure that other sufferers have a fighting chance.

Amongst all the sadness, I want sufferers to be reminded of the amazing and exhilarating stories of survival. People can and do survive this devastating diagnosis. Family, friends, patients and dedicated medical and research teams all stand united to find a cure and dramatically improve survival rates. I believe the key to this is dedicated research and funding, improved support services and greater public awareness.

Sending all patients and carers much love, positivity and dedicated prayers. Mary xox