Feel Good

How to live with a terminal illness

A decade after being given the all-clear, Sue Buzzeo was told that her cancer was back – and this time, it was incurable. Here, she shares her story with HLN: the plans she’s made, how she told her children, and how the prospect of death has changed her outlook on life

Written by Laura Kingston
Published 06.03.2021

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:

It was a total shock.

I was in hospital with pancreatitis at the time, nothing at all related to cancer. In fact, I’d been free of cancer for over a decade. So I was definitely not prepared – unlike the first time, when I’d found a lump. My husband was visiting me when the doctor and her team came in to tell me what had been spotted on the MRI. We were both confused by the explanation: my breast cancer had returned in my bones? Did that mean I now had bone cancer?

No, it didn’t. It was still breast cancer, but the cancerous cells were now growing on my spine. I could see her lips moving but I wasn’t hearing everything she was saying. Everything seemed to move as if in slow motion, as I tried to get my head around the words that caught my attention: secondary cancer. Stage 4. Not curable.

 

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.

Those were some of the hardest and most painful conversations I’ve had in my life.

To know that, up until the point where you share with them the words: ‘my cancer is back and it’s stage 4’, their world is bobbing along quite nicely. Once those words are spoken, there’s no going back. We told the children first: Rachel (37, with a partner and two children); Mikki (36, married with two children); Ted (31) was at sea, so we had to tell him over the phone; Jamie (24, married); and Andy (23, just graduated and about to move to London). Jamie told Lewis (19) as he was seeing him before we were. The pain on their faces was heartbreaking.

 

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.

The advice that I’d give if someone you know has terminal cancer is this:

Let the person with the cancer lead the conversation. It’ll be very obvious if they want to talk about it or if they are steering you away. Remember that everyone is different and different people will respond in different ways. Some may wish to keep their news very private; others are okay with the world knowing. If you’re not sure what they want, ask them: do you mind if I share this news? How can I support you through this time? Is there anyone you would like me to tell for you? And what would you like me to say?

 

One of the hardest things, post-diagnosis, is that some people stop seeing you

The person, the friend, the mum, the daughter, the manager – they only see the cancer. Often I would want to say: I am still me! I haven’t changed who I am. I may look at things differently or I may not, but I’m still the person I was the second before you found out.

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.

 

 

What sometimes concerns me is how I will die – will it be painful?

As a Christian, I do have faith and peace about dying, death and what happens next. But I would be lying if I said that I haven’t had some private tears about how I will die. My main concern is most definitely the impact my death will have on my family.

I sometimes look over at my husband – and maybe he’s just watching the television with a cup of coffee and a biscuit in his hand – but I’ve had to, on many an occasion now, get up on the premise of going to the bathroom, just so that I can sit quietly and cry as I imagine the same scene without me. My heart breaks at the thought of him being on his own – nobody to give him a cuddle that day or tell him that he’s loved. Then I know I have to flush the loo and walk back in, all smiles, and just continue the evening as normal.

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.

 

I love writing – it helps me to unravel my thoughts and emotions

My husband and I decided that, from the off, we weren’t going to use Facebook to share my cancer progress – that would remain as somewhere to post about our ‘normal’ activities. I did, however, set up a page linked to our Facebook account where I share blog posts about my journey. I’ve been so fortunate to receive feedback from people I don’t know: telling me how, by reading my blog, they’ve been able to make sense of their family member’s experience and behaviours. That in itself is such a precious gift.

I’ve also set up a group on Facebook – Secondary Bone Metastases – which is just starting to pick up. That’s a forum I can use to communicate with others across the globe who are in similar situations to me. We share experiences, ask questions and realise that what we are feeling is ok and normal.

 

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.

A terminal diagnosis is being told something you already know – one day you will die

The same as everyone else. That puts things into perspective. The benefit of getting the diagnosis is that it forces you to face it earlier than expected, which has allowed me to make each day count. I try to focus on what is important and let go of the trivial things that can consume us sometimes.

Positivity is a state of mind.  When I hear across the Secondary Bone Metastases group that someone’s mother has stage 4 cancer but can’t afford chemotherapy, it reminds me how fortunate I am to live in the UK. We have an amazing NHS and access to tests and treatments which others don’t. I also know that new treatments are being trialled regularly; I have already lived with this for 18 months and I’m still here.

I have amazing family, friends and a church that I know are there for me and my husband. So whatever happens, I seek to stay focused on the positives, keep making great memories, live for each day and be the best that I can be.

 

 

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