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'I lay with my wife as she died. It was bloody awful'

NZ Herald

Bowel cancer is one of New Zealand's biggest killers. Last month Taranaki man Rob Kirkwood lost his beloved wife Paula to the disease, leaving their three young children without their mum. Here he tells Paula's story, and urges changes in our health system.

There was music and dancing, laughter and tears.

About a hundred friends and family from around New Zealand and the world were at the surprise 49th birthday party for my wonderful wife Paula. They packed out the hall at the Fitzroy Surflifesaving Club.

Our three kids Milly, 11, Daisy, 9, and Archie, 7, ran around with heaps of other kids. There were jokes, singing and speeches - and a loud, full-on version of the "hokey tokey", which was a family tradition whenever we got together.

There was so much laughter, and the room was filled with love. It was, without doubt, the best party we'd ever been to.

But it wasn't any ordinary birthday party. It was also a chance for Paula to say goodbye to her friends, and tell them how much she loved them.

Three weeks later, my incredible wife was dead.

Paula adored being a mum. She would do anything for her kids and loved them unconditionally.

She'd had an amazing career teaching, working as a mountain guide and at Antarctica, but when our kids came along, she felt privileged to stay home with them.

She was committed to giving them a happy, healthy life. She loved gardening and always provided home-grown fruit and veges to family and friends. Our shelves and freezer are full of home-made sauces, pickles, soups and stews.

Our first daughter, Milly, was born with a genetic condition called Marfan Syndrome. We were told it was unlikely she'd live past 2, so we started learning about it as quickly as we could. We went to a medical conference in the US held by the National Marfan Foundation, which changed our lives and meant Milly has gone on to live a full and happy life.

Over the years Paula became one of New Zealand's experts on Marfan Syndrome. She was always up to date with new research, medical advances or international specialists that could help Milly. And Paula was well known in the medical world for asking lots of questions. If she didn't get a good enough answer, she would keep going until she was satisfied.

Paula stood up strong for what she believed in. She was a staunch advocate for the physically disabled and would fight hard for inclusiveness in schools and the community, and held officials to account for any promises made but not delivered.

Paula adored being a mum to her three children Milly, Daisy and Archie. Photo / Supplied
Paula adored being a mum to her three children Milly, Daisy and Archie. Photo / Supplied

Her greatest strength was challenging those able-bodied drivers who parked in disability car parks. She would stare them down hard until they left. Sometimes it got awkward . . .

We were together for 23 years. We met in 1996 when she came to Fox Glacier in the hope of getting a guiding job where I was working.

My role at Alpine Guides included training and development, so whenever any prospective guides turned up I'd meet them. When I saw Paula I immediately thought "crikey she's cute". Normally I'd hand possible recruits over to another guide to show around but this time, I decided I'd do that myself.

It was a wise call. Our friendship turned to romance and we shared a lot of interests, including biodiversity, the mountains and especially the Himalayas, where we went walking together within a few months of meeting.

Over the years we guided together on glaciers in Norway and travelled through the mountain regions of Europe, sleeping in our tiny tent to save money for drinking fine wine and great coffee, and eating amazing food. They are memories I treasure.

Last October, Paula had ongoing sharp abdominal cramps that worried us enough to visit the emergency department at Taranaki Base Hospital. Paula went to hospital five times over three weeks, only to be sent home each time - variously told the pain was due to constipation, a stomach ulcer, anxiety or irritable bowel syndrome.

Paula was worried about bowel cancer because her younger cousin had died from it, but every doctor told her it would be unusual because of her age and lack of symptoms. Blood tests and x-rays showed nothing unusual.

On the last visit in November, I made it clear we would not go anywhere until Paula had a CT scan. They eventually agreed, and within an hour Paula was in surgery having a golf ball-sized tumour removed from her bowel.

The cancer, which had also spread to her liver, was stage four and not curable.

Paula started on an aggressive chemotherapy, which held the cancer at bay for five months. She also took part in a clinical cancer trial, but unfortunately the immunotherapy drugs attacked Paula's pancreas instead of the cancer cells.

On July 10 she lost her fight.

Paula's diagnosis was a real shock for us. We've always lived an active and healthy lifestyle and been proactive with our health, undertaking regular screening for breast, cervical and prostate cancer but bowel cancer was not on our watchlist.

The diagnosis made us realise that no-one is immune from this awful disease. The more we researched and learnt about bowel cancer globally, the more we realised that bowel cancer affects more younger people than initially thought. It is no longer an old person's disease.

Our experience has also taught us a lot about the health system.

Paula and I were very fortunate in that a few years earlier we'd taken out life insurance. It was a hard decision to make financially but it meant when Paula was diagnosed, we were able to pay for unfunded cancer drugs that most people would now start a Givealittle page for.

Although, in the end the drugs stopped working, it gave us options to try that we may not have without insurance.

Paula and Rob were together for 23 years and had a shared love of the mountains. Photo / Supplied
Paula and Rob were together for 23 years and had a shared love of the mountains. Photo / Supplied

A lot of people can't afford health and life insurance and it just seems wrong that because we had insurance, we got to access cancer drugs that other people couldn't.

All cancer drugs need to be made available to all cancer patients regardless of their financial position,and I'd also like to see the bowel screening programme start from 45 years old and be made available in all parts of the country. (The national free screening programme for those aged 60-74 is being rolled out across the country but is not due to be finished until 2021.)

I understand there is a lack of suitably trained colonoscopy technicians to undertake all the required screening therefore additional training and resources need to be made available to ensure there are no delays in the screening programme.

Ultimately though, our message is to be proactive with your health and seek professional help if you think something is not right. Don't settle for the first diagnosis but keep questioning until you are satisfied.

Just because you don't experience any classic symptoms it doesn't mean that you can rule anything out. No one knows your body better than you.

It was Paula's wish to die at home, so with the help of the palliative nurses from the Inglewood District Health Trust we managed Paula's pain.

On Wednesday, July 10, I lay with Paula for most of the day. In the early evening I asked Paula's family come to the house and at 6.45pm surrounded by me, our three kids, Paula's parents and three sisters and their families, Paula finally stopped fighting.

It was a bloody awful experience watching Paula, unconscious but breathing heavily and almost moaning. She was fighting and agitated right 'til the end.

Death is not always peaceful. I will never forget that.

Now I'm at home with my three wonderful children. I am fortunate as I have an excellent employer that has held my job open, and we have a strong community of friends and family looking out for us.

Paula is always in the forefront of our minds and conversations. We talk about her every day, and the kids take turns sleeping in our big bed with me. They love it in there, being among Paula's treasured possessions. They will decide when they want to stop but it's a beautiful thing for all of us to do at the moment.

Paula with Milly, Archie and Daisy. Photo / Supplied
Paula with Milly, Archie and Daisy. Photo / Supplied

We have all been going to counselling through Hospice and Taranaki Retreat. The counselling sessions are amazing. We have a lot of fun and talk very openly about Paula.

It was important to Paula to say it as it is. We openly discussed the cancer diagnosis with the kids, we always told them what we knew. We talked about dying when it was imminent and always answered their questions as truthfully as we could.

People say that kids are resilient, but I always thought the word was overused and a way of softening the blow of a death. I was wrong about that, my kids have been remarkable.

They have all taken on a whole new level of responsibility and ownership of their behaviour and belongings. They sensed that it was really hard for me and they have all made some wonderful changes to allow our family unit to be as strong as we can. I am so proud of them.

We had some family photos taken around Christmas time and we have a few of these on our walls. Paula looks happy. We look and talk about these photos most days.

The kids are my priority so we are spending our time rebuilding after the last eight, chaotic months. We need time to grieve and heal but I know that the kids and I will be okay.

And now it's my turn to advocate for fairer treatment and care for all New Zealanders. I am doing this for Paula, and for everyone who is no longer here to do it themselves.

Bowel cancer: The facts

Bowel cancer – also known as colorectal cancer or colon cancer – is any cancer that affects the colon and rectum.

New Zealand has one of the highest rates of bowel cancer in the world, and it is the second highest cause of cancer death in New Zealand after lung cancer.

More than 3000 people are diagnosed with bowel cancer every year and more than 1200 die from the disease.

Bowel cancer affects men and women of all ages but is most common in those aged 50 and over.

Bowel cancer is curable in 75 per cent of cases if caught early. If diagnosis is delayed, the cancer may advance and be harder, or impossible, to cure.

Common signs and symptoms

• Bleeding from the bowel.
• Persistent or intermittent change in bowel habit: going to the toilet more often, increased constipation, looser stools for several weeks, feeling that the bowel is not empty after going to the toilet.
• Persistent or severe abdominal pain.
• Weight loss, tiredness, feeling weak or breathless.
• Anaemia.

Risk factors

• A diet high in red meat and animal fats and low in fruit and vegetable fibre.
• Lack of exercise.
• Smoking and alcohol.

To lower your risk of developing bowel cancer choose a diet high in vegetables and fruit; limit red and processed meats; limit or eliminate alcohol; and do not smoke. Exercise regularly (five times a week); tell your GP if someone in your family has had bowel cancer.

Source: Bowel Cancer NZ, which is a nationwide patient and whānau led charity working to reduce the impact of bowel cancer on our community.