What happens if you're alone with cancer?

How can we create a better safety net for New Zealanders fighting cancer?

This is how it goes in the movies: A young woman - a mother, a wife - tearfully reveals to family that she has cancer. She never works again, sometimes a best friend will move in to help with the children, her husband will love her even more, to make up for the horror of it all. She will survive and learn that life is precious. She will be filled with gratitude.

Amy is 47. She has bowel cancer and here’s what she wants you to know - She is not filled with joy or gratitude. She does not feel “overwhelmingly positive”. “And I do not have a newfound appreciation for life, as I appreciated my life already,” she says.

Her experience of fighting cancer was nothing like the movies, and she wants you to understand, so her story might help someone else.

There was no supportive partner. “I did not have someone to hold my hand every step of the way, to hug me and reassure me and advocate for me.”

Amy has a 12-year-old child, and there has been no break for her since diagnosis and throughout treatment. “My child’s other parent did not step up to look after our child when I was in hospital for months.”

And unbelievably, she lost some of her closest and oldest friends “they just ghosted me after I told them I had been diagnosed with cancer. I still have not seen or heard from them,” she says.

Her experience isn’t unique. It’s just not often talked about. It’s not the story you see in the media or on Instagram.

Every day, around three New Zealanders die from bowel cancer, the cancer that Amy was diagnosed with in October last year.

Photo by Marcelo Leal

Bowel cancer is the second highest cause of cancer death in Aotearoa. One in ten New Zealanders diagnosed are under 50. Amy is at pains to point out her healthy lifestyle, she doesn’t drink, doesn’t smoke, works out most days - “As the only parent in my child's life, I always wanted to make sure I was as healthy as possible, so I could always be there for them.”

She seems defensive and you can see the pain she has faced over judgement - whoever thought there would be a stigma around cancer? Amy has had to face this stigma alone.

“When I was diagnosed with bowel cancer, I was alone. After the surgeon told me the news and explained that most of my bowel would need to be removed as soon as possible, I just drove home. I had no idea what to do next, or who to tell, or how to tell them. Everyone I knew was at work or away and I couldn't imagine contacting anyone and just dropping this news on to them.”

She did tell friends, but found that few could, or wanted to, help her and her child. She was in constant agony - physical and emotional.

“About five weeks into my hospital stay, after two major surgeries and a series of severe complications, I asked to see the hospital chaplain. I am not a religious person but the pain was so relentless and so severe, that in the deepest part of the night I had begun to think that I must have done something terribly wrong in life and now I was being punished for it.”

“I had begun to seriously think about how I could kill myself.  The pain I had endured for weeks on end at this point was worse than childbirth. I was Googling suicide strategies relentlessly but I could not figure out how to kill myself when I was basically immobile. I just desperately needed the pain to stop.”

The hospital chaplain reassured Amy that cancer is not a punishment. That it has no deeper meaning. After that, Amy stopped trying to end her life. But her struggle was not over.

Once her infections were under control and she could keep some food down, she was released.

“While I was desperate to be out of hospital, the first weeks at home alone with my child were a nightmare. My elderly parents helped me a lot during this time but I was reluctant to lean on them. I was used to being the one helping them and I found it difficult to cope with the changing role of my relationship with them,” she says.

Bowel Cancer New Zealand and The New Zealand Cancer Society were a lifeline for Amy.

“I had subconsciously assumed that when someone is diagnosed with cancer, everyone around them is automatically supportive. That idea was probably formed by years of seeing on the news and social media whole communities rallying around a cancer patient.”

“These stories are important and uplifting, but the truth is that not everybody who is diagnosed with cancer has the whole-hearted love and support of their friends, families and communities.”

“Social stigma towards sole parents still exists and that doesn’t simply disappear after a cancer diagnosis,” Amy says.

Photo by Olga Kononenko

“Before cancer, I worked full-time, I parented by myself, and I loved spending time with other people. At present, I am not well enough to work, even part-time. The pain is severe at times, and I don't have control over my bowel.”

“My whole world has shrunk, and unfortunately, so has my child's. While I would love to take him places and do activities with him, I can't. The active and busy person I once was is gone.”

Cancer Society chief executive Rachael Hart says going through cancer treatment can be profoundly isolating.

“It’s isolating because it’s hard to talk to people you love about it and it’s hard for people who love you to talk about it with you,” Hart says.

“Often the person with cancer doesn’t want to to burden their partner or family, so they end up supporting them going through their own journey - so it is a personally quite isolating time.”

“That’s the beauty of services like The Cancer Society, it provides someone who is just there for you, someone who is on your team, answering questions, and supporting you.”

The Cancer Society has no direct government funding.

Victoria Thompson is the Nurse Support Coordinator at Bowel Cancer New Zealand. When I ask her how long she has been nursing she says “since I was born” with a laugh.

She tells me Amy’s story is sadly not unique. In working in community palliative care she has supported New Zealanders with cancer who are “all by themselves”.

“It’s really incredibly hard. It is probably more common than we give it credit for.”

“A lot of people when they get diagnosed, people just disappear out of their lives,” she says. “People don’t know what to do with you. And it’s ‘I don’t know what to do, so I won’t do anything’.”

Bowel Cancer New Zealand, like The Cancer Society, is 100% community funded and receives no government assistance.

Whether it should be funded, and by how much, is a political riddle that Thompson needs to sidestep. Exactly what role community care should take within that funding gap is a hard question too.

“There just isn’t the funds out there for that social support and for the little things like ‘I just need someone to clean my house once for me so I can get on top of it’ - the really practical stuff.”

Photo by Jon Tyson

“I think the responsibility has always been within the community. It’s been an unwritten expectation, because we just don’t have enough of a base financially in New Zealand to be able to do every piece of support that people need so there’s always going to be an element that needs that caring community.”

“I don’t think it’s a new thing but I think in the past maybe we’ve been better at community because we’ve had to be,” Thompson says.

Hart says we sometimes just don’t know how to ask for help and engage help.

“There are these opportunities for people to care in the community, like we see these amazing Givealittle pages where a whole heap of strangers mobilise around an individual but it’s very difficult to get care where it’s needed most, for the people who are most isolated. Those who need it the most are not necessarily those who get that public awareness of it.”

It’s for this reason that the Cancer Society has thrown its support behind a digital option to build a village. Support Crew allows anyone who needs a hand to set up a page that outlines what support is needed. From picking up a child at school to providing meals.

“We’re looking at how can we invest in tools that support communities to really rally around someone,” Hart says.

Amy is thankfully now cancer free, but the experience of losing friends has changed her. She is blunt with her advice: “If someone you know is diagnosed with cancer, just ask them what they need, and listen.”

What you can do to support someone with cancer

“If they are in hospital and you can visit, please ask to visit them. If you do visit them, offer to change their bed sheets and get them a clean gown, as this often doesn't happen in hospitals. Visits from friends were the absolute highlight of my day and would sustain me throughout my hospital stay.” - Amy

“When you’re having a good day, write down all of the chores that you do. So when you’re having a bad day, and someone says ‘just yell if you need anything!’ you can give them the list - Victoria Thomson, Bowel Cancer New Zealand.

“If the person you know with cancer is a sole parent, offer to take their child for an outing or pick them up from school. If their child attends school, let the school know; my child's school was incredibly supportive.  If you can offer financial help to the person who has cancer, do it.  If they are single, or have an un-supportive partner, and you sense that they are having trouble advocating for themselves, offer to make phone calls on their behalf and attend appointments or procedures with them if you can.” - Amy

“Know when treatment is likely to be because those are the points that can be the hardest. So if they’ve got treatment in two days, you’ve got those reminders to say ‘hey can I pick up the kids’. These milestones can be important check-in points.” - Rachael Hart, Chief Executive, The Cancer Society.