Anita B’s story in memory of her brother Andrew

In 2015, my brother Andrew was treated for diverticulitis, a condition when pockets that develop in the lining of the intestine become infected or inflamed. A few years prior, he ended up in hospital for over a week with symptoms including severe pain in the abdomen.

In 2016, the condition flared, and Andrew was treated with antibiotics, but the pain never really subsided. His doctor suggested he get an ultrasound.

They discovered a mass which turned out to be a tumour between his large and small intestine, so it was determined he would require surgery.

I think we all assumed Andrew was going to be ok, that they were going to remove the tumour and he’d have some treatment, and he’d be ok.

I’ll never forget the call from the surgeon that followed.

‘It’s Stage 4 bowel cancer,’ the surgeon said, ‘that has spread into his liver and blood.’

Andrew had the KRAS mutation, which meant two of the common chemotherapy treatments would not be effective, but there were other options. Although he was Stage 4, there was a small possibility that he could continue to live ‘normally’ by taking chemo every day.

I struggle to put into words how I felt. It was so sudden. He wasn’t even 40. We didn’t have a history of cancer in our family. How could this happen?

All I remember is feeling incredibly lost. I wanted to collapse, but knew I couldn’t. I wasn’t the one with the disease, so I felt I had no right to feel anything. I had to be strong.

Not knowing where to turn, I jumped online and discovered Bowel Cancer Australia’s Peer-to-Peer Network and their Bowel Care Nurse Helpline, which wasn’t just for patients. Their nurses were second to none. Whenever I was at my lowest and most needed someone to chat to, I seemed to receive a phone call. It’s as if they knew when to check in on how I was feeling, how Andrew was, how my family was.

As part of Bowel Cancer Australia’s Peer-to-Peer Network, I was connected with another person going through a similar experience, which was great. Although we never had any answers for each other, just getting all this stuff off our chests and sharing what was going through our minds was therapeutic.

Life had been great, before everything came crashing down. I had moved to Sydney from Melbourne, where I had grown up and where the rest of my family remained. I was living by the beach but was able to fly home frequently with work, so I could still visit my family. It was the happiest I had been in a long time. Life for my parents was also looking pretty. They recently sold their house, were downsizing and could finally start enjoying their retirement.

Suddenly it seemed life couldn’t get any worse. In between Andrew’s diagnosis and the start of chemo, as I helped my parents pack, clear out, and move, Mum ended up in hospital for a week with a double hernia operation. So, my dad, my older brother Anthony, and I organised the packers and unpackers. It was agreed Andrew would move into my parents’ new place with them and give up his house, so a few weeks later we packed up Andrew’s place, put his stuff in storage and officially moved him into mum and dad’s.

We had hoped the move would be temporary, just until he beat the disease. Andrew knew from the beginning that his cancer was terminal, but he never complained or felt sorry for himself. I promised I’d be there – when he needed me the most, and at the very end – and I was. It was the most bittersweet time of my life. Now, when I wake up each morning, for a split second I wonder whether this was all a dream – then I realise, it wasn’t. Some days are great, other days all I want to do is cry.

Knowing that my brother, Anthony’s kids won’t remember their Uncle Andrew is heartbreaking and I know it saddens Anthony. Neither Mum nor Dad like burdening people with their feelings or emotions, but Mum keeps waiting for Andrew to walk in the door and say he’s back from a long trip or something. I believe the more you reach out for support the better, so I’ve encouraged them to contact Bowel Cancer Australia, like I did.

Life for us now is about finding our new normal – as individuals and as a family – which, over time we are doing.