KEY POINTS:
Two cancer patients with only months to live have embarked on what will be their swansong - a petition to change the country's welfare system to help future cancer sufferers battle the killer disease.
Richard Burr, 31, has struggled emotionally, physically and financially every day since he was
diagnosed in 2005 with a rare soft tissue tumour behind his left eye.
"I went through the grief process when I was told the tumour had reached my lymph nodes," Burr said. "The analogy I used to explain my illness to friends was it spreads like an African Aids virus."
Burr's first alveolar rhabdomyosarcoma tumour - an aggressive childhood cancer rarely found in adults - was "zapped" with chemotherapy treatment.
When the vicious tumour returned, the former Nelson Marlborough District Health Board accounts payable officer gave up his $30,000-a-year job. Burr was told the cancer was fatal but he continued to undergo treatment to prolong his life.
Work and Income offered Burr $415 a week to help him through his difficult time.
But it reduced the payment to just $118 a week - in the form of accommodation and disability supplements - once it realised his wife, Alison, 29, was earning an annual salary of $37,000.
The couple can't believe accident victims are paid 80 per cent of their weekly wage through ACC but near-death patients have to struggle.
"I honestly thought I'd have to go back to work because we couldn't survive on that money," Burr said.
"I fought and then pleaded with Winz for help but they said their hands were tied and I wasn't eligible for any more."
In August, Burr enlisted the help of Nelson MP Nick Smith, and Work and Income switched Burr from a sickness benefit to an invalid's benefit, upping his weekly amount by $60.
But with rent costing $240 a week and fortnightly car payments of $160, the couple has little left over to pay for food, power, phone and medicine. Restaurant meals and drinks are a thing of the past.
"We've had to rely on friends, family and workmates to help us through," Burr said.
Alison is so financially strung out she hasn't been enjoying her last moments with the beloved husband she married two years ago once his cancer was diagnosed.
Alison left her nursing job and the couple now qualify for $580 assistance a week, which is still about $450 less than if they both worked.
"We've struggled every day, and financial worries overthrow my worrying about Richard," Alison Burr said. The couple, who are trying IVF to get pregnant from Burr's previously frozen sperm, are not alone in their stress.
Jackie and Lucus Phoenix, from the Nelson suburb of Stoke, felt like "dole bludgers" when they applied to Winz to cover their costs. Jackie, 23, has three brain tumours and less than six months to live.
Her 25-year-old husband has left his job as an organic farmer to nurse his wife and look after the couple's 3-year-old son, Cort.
"Work and Income have put us under a lot of constant stress," said Jackie, who was diagnosed in 2003.
"I shouldn't be going through mountains of documents instead of spending precious time with my family. We've had about 600 letters from the department and there isn't enough support. We got treated like we've never worked a day in our life."
The high-school sweethearts receive a weekly benefit of $720, which is $280 less than when Jackie worked at a bakery and Lucus as a gardener.
With the family's rent at $350 a week and their weekly credit repayments about $263, the couple are left with $150 for petrol, groceries and medicine.
"On the bright side, I feel the luckiest person in the world because I met my soulmate at a young age," Jackie said.
"Dying scares me but we are ignoring it."
A humorous farewell at his own funeral
Richard Burr has organised and will attend his own funeral next month in a black-humoured attempt to help grieving loved ones cope.
The 31-year-old Nelson man has been cramming in as many life experiences as possible during his remaining months, including making plans for the living memorial night, planned for November 10.
"The theme is 'dress as your favourite dead person'," Burr said. "I'm going as the Grim Reaper.
"There will be games, including 'pin the tumour on Richie' and 'bobbing for brains'.
"It's really morbid stuff but it might be the last opportunity for my family and friends to say goodbye."
Burr is determined to keep a positive outlook on life and enjoy his time left. "I have broken my arm skateboarding and had a fish hook in my wrist," Burr said.
"I've been up to lots of mischief because I can't dwell on the depressing side of things.
"I've already sorted out a hymn for my funeral.
"It's Monty Python's Oh Lord Please Don't Burn Us.
"It's very sick because I'm getting cremated."
The petition
"That Parliament review the income support available to cancer sufferers, noting how lean it is in comparison to support for accident victims, the stringent income testing where a partner is in work, and the stress families are already under in coping with cancer."
It has been distributed to Cancer Society branches across New Zealand. Copies are available by emailing here
