'A mixture of denial and hope': Living with breast cancer

Elisa Lavelle Wijohn, with husband Leon and children (from left) Luke, Josh and Māia, wants to live to see all her children reach 21. Photo / Supplied

One year ago Elisa Lavelle Wijohn appeared in this paper with six other women who were among those fighting for funding for the life-extending drug Ibrance. All of them had metastatic breast cancer – the kind that can be treated, not cured. They were part of a group that took a petition to Parliament and spoke before a select committee, succeeded in gaining funding for Ibrance and another life-extending drug, Kadcyla.

Today is Metastatic Breast Cancer Awareness Day. Wijohn, a mother of three, is now 14 months into the median survival period of 16 months that New Zealand women are given when diagnosed. She tells her story to help raise awareness of the need to remain vigilant, and why the fight for better funding of medicines in New Zealand needs to go on.

Composing a bucket list what would you choose? Would you read to your children or speak to the news? Would you write notes of love or petitions so pleading? Is it novels or drug requests you'd prefer to be reading? If your time on earth was slipping away Would you chose to have fun, to laugh and to dance Or join others fighting for a fairer chance? Would you slip away quietly into the gentle night Or pick up your sword and with others fight? Would you shrug at injustice when you see others pass Or would you fight so those after us longer will last? None of us want to spend what time we've got Fighting to give Kiwis a fair honest shot But we have and we do and we will for we must We want a nation that's a little more just So we'll fight till they listen, we will fight while we can And will do so 'til death takes us each by the hand This is not the bucket list any would choose But we do it for us, yes, and also for you.

This poem was written by my friend Claudine Johnstone, who's been living with metastatic breast cancer (MBC) for just over two years. She is among those us who've been told our lives may be shortened, but we're making the most of the time we have left – working, volunteering, one is about to do a half marathon. And many of us are fighting for a better medical deal for all New Zealanders.

Mother of five and cancer patient Claudine Johnstone penned a poem about her battle to be heard over cancer funding. Photo / Supplied

I was diagnosed with MBC 14 months ago, and cope with a mixture of denial and hope. I figure if I can live just a bit longer, they might develop a drug that makes me live longer, and if that helps me live longer, they might develop another drug, and so on, and maybe one day, they'll find a cure.

On the other hand, my husband, Leon, and I struggle to plan a life together too far in the future. Other couples might plan a big trip in five years' time or their retirement. We don't do that. I plan on getting enough sleep to feel well, to walk the dog today, to be able to talk with my 12-year-old daughter, Maia, when she gets home from school, or my 17-year-old son, Luke, or his 22-year-old brother, Josh, when he gets home from work.

When I was diagnosed with MBC Luke asked if I'd be there for Josh's 21st a few weeks later. I said yes. Then he asked if I'd be here for his. I said I hoped so. But for Maia's? That would make me very lucky.

But I want all three 21sts. So I put this cancer to the back of my mind, and hope. I devour stories of women with MBC who have achieved remission, the miracle 2 per cent. I just have to be one of the 2 per cent.

Elisa Lavelle Wijohn says she lives with a mixture of denial and hope. Photo / Michael Craig

No one dies of primary breast cancer. So when I was first diagnosed with that back in 2013 I wasn't scared of it. I knew I just had to go through a course of treatment, lose a year of my life, but I would be fine. And I was. I had a mastectomy, chemotherapy, was declared cleared and given 86 per cent odds that it wouldn't come back.

I was excited about nearing the five-year mark last year but then felt a lump under my arm. I thought "S***, that's probably not good." And it wasn't. Scans showed there was cancer in my lymph nodes, hip and spine. The surgeon wasn't able to cut out all of it. That's when the oncologist came in and said the words "treat, not cure".

And so the treatments began – drugs, radiation, more drugs – which wipe you out but which you also hope they will never end, because when they do, you've reached the end of the line. That's the difference between primary and metastatic breast cancer – treatment for PBC is finite; for MBC it goes on as long as the treatments allay the cancer and give you more time to live.

Thousands marched on Parliament in October last year demanding improved access to breast cancer medication. Photo / Emme McKay

When I discovered that Ibrance, the recommended medication that would give me the precious time I needed, was not funded by Pharmac and would instead cost me $5850 a month, I was shocked.

How could most women ever afford that? The truth is, they can't, which is why the median survival after diagnosis of MBC in New Zealand is 16 months, considerably worse than overseas where life-extending drugs like Ibrance are funded. One and five-year survival rates are also worse in New Zealand than overseas, with the gap widening. Median survival for Māori appears worse than non-Māori, and the Māori five-year survival rate is appalling.

My husband is Māori, and we had already lost his cousin and aunt to MBC, both in their early 40s. Their shortened lives after diagnosis felt even more unjust.

That's why I joined Metavivors in the fight for funding for life-extending drugs. Impressive people had been involved for much longer than me - Libby Burgess started the group back in 2004 when the fight was on for Herceptin, Terre Nicholson and Sue Wall-Cade organised petitions to take to Parliament last year, helping them were Wiki Mulholland and her husband Malcolm, and Tracy Barr-Smith did a huge amount behind the scenes. So many of us chose to spend precious time and energy fighting to make these drugs accessible for all women, and to right some of the inequity between racial and socio-economic groups.

Wiki Mulholland campaigned tirelessly for an inquiry into Pharmac's funding of breast cancer drugs Ibrance and Kadcyla. Photo / Mark Mitchell

For me, once I was involved in the fight I felt more like me. It felt familiar to be in that advocacy space. I'd had to give up my job as director of rehabilitation at Auckland's Acquired Brain Injury Service; my PhD was about advocating for better treatment for families living with brain injury. Without my work, I felt lost, and at the same time was taking a drug that cost more than I'd ever spent on a car for one month of treatment, generously paid for by my family but which was out of reach for most women. I knew that had to change.

And I wanted to fight in honour of the memory of Leon's cousin and aunt, who never had the chance I'd been given, and for the wonderful women I'd come to know through Metavivors who were no longer with us.

Not all us survived to see our success – more than 100 women died while a committee thought about our call. When approval came from Pharmac, it was bittersweet.

Along the way, we'd met advocates for life-extending drugs for other cancers and disorders, and realised just how poorly funded pharmaceuticals are in New Zealand. Of 20 OECD countries, we're at the bottom for access to new medicines. New Zealand spends just $212 per capita on medicines, compared to $466 in Australia and the OECD average of $951.

Libby Burgess, right, with Jane Bissell, leads Breast Cancer Aotearoa Coalition. Photo / Michael Craig

So the fight goes on. The group Libby leads, Breast Cancer Aotearoa Coalition, is now encouraging New Zealanders to sign Malcolm Mulholland's Patient Voice Aotearoa petition calling for doubling of the medicines budget and for the reform of Pharmac. It sounds ambitious, but New Zealand is not a poor country. We should not tolerate such severe restrictions to medicines, and running Givealittle pages should not be part of dealing with cancer.

My own fight goes on, to live as long as I can, to salvage as much time as I can from this cancer to spend with my husband, and pass on all the love and memories I can to Josh, Luke and Māia. I'll keep taking the treatments for my cancer, and in the same breath I'll continue to deny it, and I'll continue to hope.

- As told to Estelle Sarney