How to live with a terminal illness

Sue Buzzeo is a cancer survivor. Born in Newcastle, the mum-of-six (seven, if you include her fur baby) has travelled everywhere from Chile to Malaysia and had written a successful book, Hair Today, Gone Tomorrow, about her experience battling the disease. Then the unthinkable happened. In 2019, a decade after being given the all-clear, Sue was told her breast cancer had returned – and this time, it had spread to her bones.

Here, Sue shares her story:

My first thoughts were of guilt

And such sadness that I would be putting my family through this journey all over again, but without the option of beating it. My husband was stunned. When the doctors left, we both just wept. Visiting time ended and my husband was sent back home, leaving me in a ward where I was the sole occupant. I started to mourn for the future I thought I wouldn’t have – seeing my son getting married, watching my grandchildren growing up – and felt the pain of leaving my husband on his own. I couldn’t sleep.

At around 3 am I just broke down. The nurse arranged for my husband to be let back into the hospital, even though it was the middle of the night. We just lay in the bed together holding each other, talking and crying. We agreed that we wouldn’t tell anyone in the family over the telephone. It needed to be face to face.

In the early days and weeks, I found that Mark and I spent our time supporting them.

Our family and friends. Breaking it all down into language they could comprehend. There was so much for them to learn, understand and work through so they could, in turn, support us. Mark and I had to have the same conversation over and over again until everyone who needed to know was told – by each evening, we were exhausted: emotionally and mentally. Each day had been a huge mountain to climb, but as we fell asleep we knew that come the next morning, we’d be scaling that same mountain again with someone else.

When you tell people face-to-face, there are a variety of reactions.

Some, I noticed, moved their gaze to purposefully avoid me, no doubt because they just didn’t know what to say. Others were tongue-tied and couldn’t work out whether to mention the word ‘cancer’ or not. Some were straight talkers and asked outright: ‘so, how long have you got?’. When that happened the first time, it was actually quite refreshing – I laughed out loud! It’s probably the question most people would ask if they felt they could.

Having had my primary cancer, the process of considering my own mortality had already begun.

I already know that my approach to life had changed. I’m more confident in saying ‘no’ if I don’t want to do something, rather than just going along with it so I didn’t offend anyone. I use my time more carefully now and I’m always with the people I want to be with. Cancer and the treatment is tough, but it has helped shape the person I am today: someone who tries to be the best version of themselves every day; who seeks to be kind, loving, supportive and genuine.

Mortality is something that we all face, illness just sharpens the focus of the lens through which we look at it. We are all going to die one day. At times I feel blessed that I’ve had a prompt to think deeply about it, make preparations and life choices with it on the horizon, and make every day count.

Even though my life has changed, it doesn’t have to be overshadowed by my illness.

I take medication that makes me feel nauseous, my mouth is regularly full of ulcers, my back is painful, my joints can flare up – it’s sometimes impossible to ignore the impact of the cancer and its treatments. And that’s without the regular hospital appointments. This is our ‘new normal’, but we really try not to focus on the cancer. Admittedly, that has been a conscious effort and it has taken time, but we want to focus on ‘living’. It’s so easy to get hung up on the future (or lack of one) that today is bypassed, not acknowledged and therefore not valued. I often say that the past can’t be changed, the future hasn’t yet happened, so let’s focus on getting the best out of right now.

The most important thing I wanted to have ‘in place’ was knowing that my funeral was sorted.

My husband just needs to take a card from my purse, dial a number and it will all be taken care of. We’ve also had those difficult conversations which have led to me setting up a Power of Attorney for Health, and I’ve given express instructions for when a Do Not Resuscitate order is needed.

I asked my husband where he would prefer me to be when I die – at home or in a hospice. At first he said it was my decision, but I felt it was his. He was the one that would have to come back into the house and bedroom the day after. The children said they would find it difficult coming to the house if that was where I died, so together we have agreed on a hospice.

Last year I got a dog, Cooper. He’s a big, hairy, crazy Australian Cobberdog. He is, and will continue to be, great company for me while my husband is at work. But more importantly, he will ensure that my husband gets up and out of the house every day. He’ll be a great, hairy, fur ball-friend for him, and that was something I deliberately put in place to help my husband after I’m gone.