Our story was unexpected and not what we thought would happen to our father John. John had a history the last decade of an autoimmune disease (bullous pemphigoid that occurs when the immune system attacks the skin and causes blistering - not contagious). No prior history, and struck when dad was at his peak of retirement and prepared to chill out with mum, look after grandkids and enjoy life travel etc. He wasn’t bothered by it much, but it did restrict summer outings or general discomfort.

During the few years of lockdown in Victoria dad pretty much laid low and like many avoided unnecessary contacts knowing his immune system may have been impacted by COVID. Those few years we many precious moments and times we could have had with him and him with his grandchildren.

In late 2021 dad had what was a common cold and attended the GP something which he wasn’t always keen on doing but this time felt that chest cold was causing him more unwellness than usual. After being prescribed medication, he felt they were not helping and had also noticed some unusual bleeding in the bowels. Dad dismissed it but decided to act on it with a further appointment to the GP a few months later.

Dad’s regular GP wasn’t there at the time and we think that this was a real turning point for dad. The GP presented with some concerns about the unusual bleed in the bowel. Dad had no other presenting symptoms at all. Subsequently a colonoscopy was scheduled and by this time it was already mid Jan 2022.

Within hours following the colonoscopy my sister Niki was faced with a meeting with the doctor explaining that they had found a tumour in dad’s bowel and would require an urgent referral to a colorectal surgeon. The tumour would possibly impact the bowel if not removed and that further tests would reveal some slight spotting on the liver where the cancer would eventually metastasise.

It was Stage 4.

By March 2022 dad had undergone su
rgery (alone in hospital for two weeks during what still was covid safe rules in hospital) recovered well with the tumour removed and was in good spirits always.

Dad never talked about not surviving this and death was not on the cards for him. What we knew was that chemo or radiotherapy would help, but the downside was we knew having his autoimmune system issues underlying this would impact his body fighting back. But dad did not give up, any treatment options that would be offered to him he accepted. Dad was becoming weaker by April and after his first course of chemo tablets we knew he wasn’t keen and that his body was failing him. He was becoming weaker and eating less. The cancer however had been removed from the bowel and we thought this was great!

Unfortunately, by May despite two rounds of treatment the cancer had now metastasised in the liver and his immune system could not fight back.

Dad would spend his last Easter at home managing to cook us all lunch. At this point dad had expressed to my husband George that he didn’t feel well and maybe hospital was the best place for him to heal and be treated.

Dad was keen on giving another round of treatment options at this point, and within a few weeks by the end of May dad would be admitted to Hospital.

Not once would dad speak of dying and nor that he was unwell or too sick. In fact, there were days and nights we were in the hospital as a family and he would remind us to go home and go to work and look after the kids and make sure mum his wife was home safe. It was never about him. He was a humble selfless soul. He had this amazing positive outlook in life always glass full and it was never about the worst case scenario.

Those last few weeks in hospital for dad were not easy, we knew this, but we did not think that this was the end for him either.

Unfortunately, his liver would fail him and his immune was no longer strong. By this stage dad was too weak, and as much as we wanted him home, he opted for the hospital stay. We often wonder that whilst he never talked about dying, and that he was going to get better, that
he really did not want to die at home. The place where his life was full of love and happiness and that this memory of him needed to be separated.

The doctor would often tell us that 'John is a unique man with a great outlook in life and that he had never questioned him about dying or what would be, but rather always of I will get better, I feel good today it is a good day'. Even until the end dad would say I am getting better, and I will come home.

Sadly, on June 4 dad passed away with his wife, our mother Maria by his side. He silently fought this disease, and not once did he tell us he was in pain or uncomfortable. In fact, not until the few days prior he would tell the nurses that he did not need assistance in going to the bathroom - there was a real sense of pride and strength rarely seen by many.

But our story did not end there.

Our mum was and is filled by grief with her loss of her best friend and partner. She had expressed that she wanted to go to the GP and make sure she was all ok. We wondered if this was part of her grief and ensuring that her health was in check. Mum had NO symptoms, no gut issues, no bowel issues, nothing! Just extreme tiredness impacted by grief.

All her general checks were good. Mum was insisting on a scan or a colonoscopy just to make sure. The GP acknowledged grief as a presenting factor and whilst no immediate concerns were noted a plan to schedule an appointment was made.

I cannot even begin to explain how we were all shocked yet again when my sister would be sitting in the same doctor’s office being told they had found a small tumour in mums’ bowel and we would call it Stage 2 requiring surgery and no additional treatment.

By the end of October mum had been slowly recovering from her own surgery. The surgeon was still surprised of the chances of a husband and wife being diagnosed with bowel cancer within months. It was the luck of the cancer draw cards he would say.

Despite mum’s grief and surgery, she too shines positivity and only good vibes. She speaks of, had not this happened to dad she may have left something go untreated because after all she was fine.

Subsequently despite the cancer not being hereditary or raising any concerns for us. The doctors’ advice was for my sister and I to get a colonoscopy and we were relieved to be given the all clear.

A year has passed since dad left us and we are all healing in our own way. We cannot thank the Hospital enough for their care and support of dad, the end-of-life care and respect we were all given the last few days, for the care and support they provided to mum and her recovery.

We are blessed with an amazing health care system and amazing nurses who live and breathe the daily struggles of patients with cancer working in these wards.
Bowel Cancer Australia were an amazing support network for patients and families and a reassuring avenue of knowledge and questions when we did not know the answers ourselves.

The Bowel Care Nurses and telenursing were amazing. I have included a few pictures of dad enjoying his morning coffee (a must) and happier fam days.
We will miss him every day and are blessed and thankful that mum beat this and continues to warm us with her love, support, hugs and positive vibes.