‘I am worth keeping alive’

JESS SPENCE

Iwas living the dream in London, working as a senior marketing manager, travelling Europe for work and enjoying a busy social calendar. It seemed like every weekend there was something new to discover.

But on January 27, 2015, I was diagnosed with bowel cancer. I was told that I was stage four and incurable, I had secondaries in my liver and bones.

My world turned upside down. After much consideration I decided to head back to New Zealand to be with family and to a medical system that I considered to be world-class.

Over the next 16 months I had 19 rounds of chemotherapy, six weeks of radiation, and a surgeon convinced me to have remove the tumour removed.

It was then they discovered that I was actually misdiagnosed and I had neuroendocrine cancer, or NET.

A neuroendocrine, or NET, tumour is an unusual cancer that starts in your endocrine system, the glands that produce and secrete hormones – chemical substances produced in the body that regulate the activity of cells or organs.

Approximately one Kiwi a day is diagnosed with a type of NET cancer.

At first I was so angry, I wanted to sue someone, I wanted someone to be accountable for this lifealtering error.

Not only had I been taking the wrong drugs, but the best possible treatment for my type of NET was not in New Zealand and not funded.

The treatment, called peptide receptor radionuclide therapy (PRRT), is free for Australians at the Peter MacCallum Cancer Centre in Melbourne.

Sitting in my oncologist’s office, I was relieved to know that there was something that could be done to sort the pain and shrink the tumours.

Then I was hit with it; it would cost $40,000 just for the first year. This was numbing, knowing that I had a lifeline within reach, but one the Government didn’t deem worth funding. Leaving the appointment was bitter-sweet – I had a promising treatment option, but it would be costly.

Back in my home town of Gisborne, my family and community pulled together and raised $114,494.

My sister and cousins threw a winter ball that raised more than $35,000. Local people donated all sorts for the raffle on the night; my brother, a pilot, offered a helicopter ride.

My sister set up a Givealittle page that raised $66,000 and the Gisborne community really got behind me to help fund the rest. There were fundraisers at rugby games, the local farmers donated wool, cash turned up in my letterbox. The support was overwhelming.

I was able to make the best medical decisions without the burden of finances. I was in Gisborne where my whole family lives, but flew to Auckland each fortnight for chemo, which was not funded, then had the rest of the drugs in Gisborne Hospital.

After a lot of complications, I decided to move to Auckland to get better access to more specialists. We turned the Givealittle fund back on and it raised the extra $20,000 that I needed to be able to start PRRT. I had enough money now to fund three rounds, three scans and flights.

The first trip to Melbourne was really stressful, I was sick and in pain and so the travel was exhausting.

The treatment itself is a radioactive liquid, about 7ml, that is injected into the arm. It goes around my body and finds the tumours, then it locks itself to them and kills them (that is my non-scientific explanation).

It manages to get rid of most of the tumours, but then new ones grow. Over time they push on my bones and that is what causes all the pain. When I get to the point I can feel the ache in my bones I need treatment, preferably within weeks, otherwise daily life gets really hard, I become more restricted in what I can do, I am in constant pain, sleeping is uncomfortable and fatigue sets in.

The actual treatment was quick and it was all over in three hours, but I had to stay in Melbourne for three days because I was, quite literally, too radioactive to fly.

I have a vivid memory of being slumped in a corner of the airport waiting for my flight, my body aching everywhere, the nausea so overpowering I could barely focus on what was happening.

I couldn’t eat, walking was exhausting and I was still a threehour flight away from my home and bed. That flight seemed neverending, I had paid a extra $400 for a little comfort in premium economy, but not even that helped the state I was in.

However, 10 days after my first round all my pain had gone, I could use my right shoulder, I could shower properly, drive and lift grocery bags, it was incredible.

To think I had been living on daily morphine for the previous few months and now I was taking no pain meds – it was a miracle. I had my second round of treatment six weeks later which pretty much got rid of all the tumours, so I was given a six-month break.

During that time I got into yoga, went from being able to walk no more than 10 minutes at a time to almost an hour’s walk without a rest.

I started looking for a job. I was now optimistic that I could manage ongoing treatment and a part-time job. Getting back into the workforce after two years off was daunting and no recruiter would help me. I felt like I was in the too-hard basket after explaining that I live with cancer.

I was very fortunate that my former employer, Lion, gave me a marketing role. Just before I started my new job, I had my third round, as new tumours had grown in my bones.

In December I had a scan that showed about 50 tumours in my bones, mostly small ones, but a few larger ones in my spine. I tried to book into Melbourne but they were full until February 1, as they only do this treatment twice a week and shut down over Christmas.

It was a painful Christmas and I was starting to think how I could cope for another four weeks. The pain meds only dull the pain, they don’t get rid of it.

I was called by the team in Melbourne late on a Monday afternoon in early January – there was a cancellation, so they wanted to see if it was possible for me to get there the next day. I jumped at the opportunity to get rid of the pain but unfortunately, Air New Zealand was not so understanding and it cost $1600 to change our flights (I travel with someone to help me). To top it off, on both flights there were empty seats all around us. That cost me half a scan.

I think about all my costs in this way: Everything is always compared to what it would get me in the medical world. I was asked the other day what I would do if I won Lotto – my colleagues piped up, one saying they would buy a bach, another one would travel. I didn’t say anything, as my response would have been that I would keep myself alive and never worry about medical bills, which is a morbid thing to say around the lunch table.

My fourth round was tough but well worth it, I was pain-free again and pretty much back to normal, but while there I discovered that the costs had gone up.

What used to cost just over $7000 is now closer to $10,000. That is just for the drugs and treatment, on top of that are flights, accommodation and expenses.

I need to save $748 per week to afford two rounds of treatment and two scans per year. It feels inhumane and so frustrating that someone in Pharmac has decided that the treatment that keeps me functioning, working and living is not worth funding.

I feel rejected by the New Zealand Government. I pay my taxes and contribute to society but they don’t support me to live with cancer, instead they will pass the buck to Pharmac. It just feels very wrong that on top of having cancer I have to also work out how to fund my own treatment.

The system is happy to prescribe me morphine to help mask the pain, but they don’t want to fund drugs to get rid of the pain. What is worse than that is the thought there are Kiwis out there who are not as lucky as me. Despite the size of the bills, I can afford them.

People have to sit in that doctor’s office and be told that they could live a better life, but in reality they can’t afford it. We deserve to have a chance at living a better life without the worry of funding it.

I got back last week from Melbourne for my fifth round, and hopefully I have a nine-month break. There is no set routine so it could be longer or maybe shorter, but at this point I am just grateful the drugs work and give me a life that I can enjoy.

Cancer has changed me, it has been a challenging few years, but I am learning to live a relatively normal life with cancer. It will always be a part of me now, but it doesn’t define me.

There are still a lot of things I want to do, but when it comes down to it all I really want is time, time to spend with my partner, family and friends. PRRT gives me that.

All I can ask is for Pharmac to decide my quality of life is worth the cost of treatment.

There are 15 areas that they consider before funding treatment, mainly based on cost, benefit and savings. To them it’s a numbers game.

For me, the cost and savings are minimal compared to the benefit of the treatment. Hopefully Pharmac decide treating me is worth the $10,000 per session.

It is safe to say I contribute more to the economy and society when I am well enough to work. Without treatment the pain would be too much and I would eventually be back on the benefit. I would spend a lot more time in the health system and no doubt hospital, so the cost of treatment would most likely work out cheaper.

Even if Pharmac just picked up the medical bill in Melbourne that would make a dramatic difference – that would be a large chunk of the costs I wouldn’t have to worry about. I hope Pharmac make the right choice and decide I am worth keeping pain-free and alive.