‍Names have been changed to protect identities.

My husband Adam was diagnosed with cholangiocarcinoma, a rare bile duct cancer, in June. He had a major liver operation, removing three quarters of it to get rid of the tumour, and for a while, things looked hopeful. But a year later, the cancer returned to his stomach lining. We tried everything, fundraising for immunotherapy and chemotherapy, but infections took their toll and he passed away 6 months later.  This is our story.

Adam got sick and ended up in hospital on Christmas Day.  After three days, he was transferred to North Haven Hospice for pain management and in preparation to go home. We’d been referred to hospice earlier, but he was quite well then and still receiving treatment. We hadn’t been tapping into any services, but they did ring once a month to check-in. It wasn’t until Adam went downhill and ended up in hospital again that we really started talking to hospice properly.

When we arrived at North Haven Hospice, James was on no pain medication which was unusual. His diagnosis was end of life at that point. He’d been told in early December that he had days to weeks, and he ended up living for one month and one day, just to prove them wrong I suppose. Transition to hospice care was so different. In hospital, it felt like they didn’t know what to say or how to help, but when we got to hospice, I felt like all the experts had arrived. They knew what to do. Everything could be discussed. We felt supported and like we had someone to drive the bus. Although technically Adam was driving the bus, hospice was helping him.

After three nights in hospice, we went home on New Year’s Eve, and he died 7 days later.  We were at home for a week. Hospice was on call. We’d ring them up whenever we needed anything. One night, the tube in his nose came out. My friend Grace, who’s a nurse, offered to come after her shift, but Adam was in a lot of discomfort and quite distressed. I asked hospice if I could try putting it back in because I’d seen them do it many times, and they said, “I can talk you through it if you want to give it a go.”

With guidance from a hospice nurse over the phone, we managed to put the tube back in. When you’re in a panic and you ring them, they don’t panic. They calm you down straightaway. Sally, a North Haven Hospice Community Nurse, came every day to help us, dropping off meds and checking in on Adam. it was always a blessing to see her. If we didn't know what was happening, they did, and nothing was ever a problem.

And afterward, there was bereavement and counselling. I had several counselling sessions, just when I was having a little bit of a wobble and couldn’t get through it myself. I’d email and request a session, and I’d feel a lot better afterwards. They really helped. A safe place to talk about what was going on. I always came to the building at Takahe Street as it was more private. My daughter came here too. She’d play on the piano during her sessions which seemed to help her open up. It's been a rough ride for the kids too. Hospice really understands grief and death. Coming back to counselling was quite hard at first.  

Everyone lives and everyone dies. Grief: You can bottle it up, but it spills out in another form. I used to struggle with answering people who asked, “are you ok” so now I’ve got a saying: “I’m OK…until I’m not.” It’s the perfect way to describe it. At the beginning, everyone resists hospice because hospice means end of life. You might not be ready to accept it, but hospice staff never push. They’re just there, gently, waiting until you’re ready.

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