5.
Catherine

It was just before Christmas in 2019 and Catherine was sitting in front of her G.P.

“I had been going to see her every two or three months since 2017 because I was bleeding, and I was always exhausted.”

Catherine thought it was most likely menopause-related and while the iron and blood transfusions gave Catherine some short-term relief, the bleeding never stopped and neither did the fatigue.

“I asked the doctor for some laxatives because I thought I was constipated but after I took them, well…..I don’t know how to describe what happened next. It was horrific. It was the worst day of my life.”

Catherine says her stomach began to bloat and distend to the point she looked heavily pregnant, and the pain was excruciating.  She was barely able to walk when she arrived at hospital, where they ran a series of tests and scans.

“My daughter and sister stayed with me but it started to get late, so I told them to go home. I have two grandchildren and I wanted my daughter to look after them, and not worry about me.”

It wasn’t until the results of the CT scan came back that Catherine knew she was facing a challenging diagnosis. She was told that she should ask her family to return to hospital.

“They said I would need some support around me. That’s when I knew. I knew it wasn’t going to be good news.”

Catherine says the next few hours are a blur, but she remembers when the doctor told her she had terminal cancer.

“They said I had a 6-8cm tumor blocking my colon and two months to live, at best. I don’t remember much after that except my daughter next to me. I remember her breaking down. I remember her grief. I’ve been a solo mother since she was three years old, and I was so worried about her and my family. I still am.”

The hospital thought they could remove the tumor to create some relief, but further tests showed the cancer was in Catherine’s lymph nodes and her liver too.

The time it would take to recover from surgery would be longer than her life span, so palliative chemotherapy was her only option.

The colorectal team at North Shore Hospital placed a stent in her tumor to relieve the blockage and Catherine began her first cycle of chemotherapy.

When she reacted badly to a government-funded medicine, her oncologist told her about Cetuximab, a highly effective immunotherapy drug that could extend her life. The only problem was the cost. Cetuximab isn’t publicly funded in New Zealand.

Some 50 countries including Australia, Venezuela, Libya and Colombia fund Cetuximab, but it remains out of reach and unfunded in New Zealand. Medsafe have approved it for use here, but Pharmac has declined four applications to fund it as an immunotherapy treatment for bowel cancer.

Catherine suddenly had to find $30,000.

Her health insurer covered the first $10,000 before Catherine’s daughter, Brijana turned to the internet for help. She set up a Givealittle page and asked friends and family to help her raise $20,000.

Bowel cancer is New Zealand’s second biggest cancer killer, killing as many New Zealanders as prostrate and breast cancer combined. Every day, around 8 New Zealanders are diagnosed with it. Almost half will die. Despite this, New Zealand hasn’t funded a new drug to treat bowel cancer in 20 years.

“I got to the point where I needed another round of Cetuximab but I said we can’t go out to fundraise on Givealittle again. We can’t keep asking people for money. There are so many people in my position, and I’m just grateful for the donations that have kept me alive until now.”

Catherine now has no option but to accept her situation. She has a strong Christian faith and it has helped her to embrace her cancer. She is praying for a miracle, but she has found peace with her terminal diagnosis, and by reconnecting with some of her Ngā Puhi whānau.

“My mokopuna are beautiful. I was there for my grandson’s fifth birthday, and my granddaughter is now three. In a way, this has been the best time of my life for my family. I am calm, I live every day and I know I could have been angry at my misdiagnosis but that won’t help anyone. I’ve tended to lean towards my faith instead.”

Catherine says it is her daughter who has shouldered the greatest strain. She emptied her colostomy bag every day when Catherine couldn’t bear to look at it and helped her finally accept it. And she has cared for her mother while juggling two jobs and two young children.

“She took me to the mall in a wheelchair at Christmas and at the same time she was trying to push my granddaughter in a stroller. It is so hard for her. She’s a young mum, she shouldn’t have to do this.”

Catherine has planned her funeral and now spends a lot of time resting. The stent in her tumor recently snapped in two and her specialist says it can’t be removed. She moves gingerly amid fears it may perforate her bowel.

“I don’t want pity. I am only telling my story because I don’t want this to happen to other people. I have been gifted more time with my family because of the kindness and charity of others who funded this drug. But I think we have to ask ourselves if we are comfortable living in a country where only the rich can access medicines.”

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