Karen’s Story

“It was February 2019, when my Mum (77) was diagnosed with stage 4 lung cancer – she had been coughing for a few months and her GP kept putting it down to allergies, and declined the requested follow up. Within a week of moving Mum to a new practice we received her initial diagnosis. The next day my Dad (76) had a colonoscopy and they discovered his stage 3 bowel cancer.

Dad had been having intermittent bleeding associated with haemorrhoids for a while and was also experiencing thin stools, but no other symptoms. At one point the GP mentioned a colonoscopy to him, so he presumed a referral was being made – we later discovered there was miscommunication and this wasn’t the case. It was not until a further three months (on Christmas eve!) they first mentioned this to me. As I work in primary health care, I was able to have an immediate conversation with the practice team and an urgent referral was made.

Following Dad’s diagnosis he had a couple of months of chemo and radiation, and then the surgery in June – which included a colostomy bag. Post surgery he continually felt unwell and when he was finally discharged from hospital, we ended up taking him to ED. He was constantly nauseous and unable to eat much. Following a CT we were told there were a couple of twists in his bowels, so the plan was to fix these in the following two weeks and remove the bag. That was the day we were told Dad was cancer free. He was admitted back into hospital for IV fluids to rehydrate and raise his very low blood pressure.

That evening Dad went into heart failure and died in the early hours of the morning – turned out he was having a heart attack the previous day. Mum was having respite at Hospice at the time and never left, dying 12 days later. I buried both of my parents in July 2019.

There are so many things I wish I had done differently, but it was very challenging being the primary caregiver, while trying to juggle a fulltime job and deal with my own health issues. I am sharing this story because my wonderful loving parents were always helping other people out and I know they would be happy if this made a difference in someone’s life.

My advice to you is if it doesn’t seem right push hard for answers – be the squeaky wheel. Encourage open conversation, especially with the men in your lives who like to keep stuff to themselves and don’t want to ‘bother’ anyone. Challenge health services when things go wrong and if you don’t feel comfortable doing that, find an advocate to support you. Finally, as a caregiver look after yourself and share the load if you can – being broken will only limit the support you can provide.”