author:
Beverley Fox
At the beginning of last year, feeling unwell, mother of three, Tui Allen, finally decided it was time to go to her doctor.
After various tests were carried out, Tui was informed by her GP she had a large lump in her right breast and told the bad news - she had advanced, stage three cancer.
“I had never been to a breast screening clinic, and although I had heard of people getting breast cancer, I didn’t really think about it as applying to me. The news left me numb and devastated at the same time.
“I was booked in for a full mastectomy in Auckland Hospital, and six weeks later went through the surgery. I then underwent six chemotherapy treatments and 25 of radiation. “The radiation has effected my lungs, but it was a precautionary measure,” explains Tui.
Tui says the chemo and radiation treatment was the worst thing she has ever experienced in her life. As Tui’s cancer was so advanced – even after all this treatment, the chances of the cancer returning remains high.
“By July, after testing the tumour they had removed, I discovered it was Her C type cancer and it was recommended I undergo Herceptin treatment.
“Luckily for me, Herceptin had just been offered by the government to allow me the first three treatments free. Unluckily for me, I need a full course, which meant I needed another 14 treatments.”
Tui, who turned 42 this year, was informed by Auckland Hospital it would cost her a total of $125,000.
“I didn’t have that kind of money and I was scared and worried. I heard a rumour that Herceptin treatment was cheaper in Palmerston North, offered by oncologist, Richard Isaacs.
“I managed to track Richard down and he explained he could give the same treatment for $85,000. But still - where was I going to get that kind of money from?”
Why is there such a difference in price for the same treatment?
“Apparently hospitals charge $1000 just to insert the needle in your vein to allow the intravenous treatment to proceed. As I had chemotherapy it is difficult to find a vein that is good to use. It is painful having someone try over and over again to insert a needle – initially at Auckland Hospital, I had to ask for full anaesthetic it was so bad.
“Richard doesn’t charge for this service. Also, he doesn’t charge for his time during the treatment either,” says Tui.
Even though the price for the treatment has been greatly reduced, $85,000 is still a lot of money to find, how has Tui managed so far?
“My family, friends and my bank have been great. But I have now run out of money. I need another $45,000 to complete the treatment. My son is selling his car and is giving me the money towards further treatment, as to the rest - I simply don’t know.
“I think of all the women out there - mothers, daughters, aunties, who have been offered the use of Herceptin – but once they hear the price of the treatment, walk away to die. They don’t want to be a financial burden.”
How has Tui’s fight for life with cancer affected her family?
One of Tui’s three sisters, Rose Carpenter of Waipukurau says, “When I initially heard the news Tui had breast cancer I felt disbelief. Tui is ten years younger than me and had not let on she was feeling so ill.
“Tui’s cancer was so advanced it had reached her nodes, my world crumbled - I knew with Tui attending Auckland Hospital she had access to the best treatments.
“So I hung onto the power of positive thinking. I went to my Catholic Church and asked the congregation to pray for Tui, which they did and still do.
“I then happened to talk to Susanna Clark, at MP Craig Foss’s office in Waipukurau. Craig and Susannah both encouraged me to start a petition to the government for the full Herceptin treatment to be made available free to all women. We had a huge response with 2750 signatures.
“Last Christmas instead of buying presents we gave the money to Tui,” says Rose.
Tui’s third sister, teacher at St Joseph’s, Hastings, Jacintha Bourke explains, “All my sisters and I were worried sick, and have constantly been there for Tui.
“When Tui went through her chemo and lost all her long hair I could see her suffering – the least I could do was shave all my hair off – our mother Dawn Allen, joined in and had her hair shorn too so Tui would not feel alone and know we were there for her.”
Tui’s 18 year old son, James, said, “It has been hard to see her go through this. If Herceptin was fully funded it would take away so much of our stress and we could concentrate on getting mum well. All we can think about is how are we going to do this? I feel I can’t do anything except be there for her, love her and make her laugh. It’s all I can think about, this is my mum.”
Sue Robson, CHB College teacher, is Tui’s second sister, “Sue reminds me that having cancer can be a very lonely disease and she is right on the button. Sue reguarly meets me at the airport when I come down for my treatments and has been great in other areas too,” said Tui.
Tui’s fight for life is still not over - with a full course of Herceptin Tui’s life can be extended another ten years and beyond. Without it – it would be a lot less. In September Tui will be undergoing another major operation to remove her other breast in a preventative measure. Her body cannot stand any further chemo treatment should the cancer return. Herceptin is her last and only hope.
Tui says, “The generosity of my friends and family has been wonderful. It has been very difficult and humbling for me to accept funds from these people who have their own family and expenses. But I know I must accept help if I am to give myself a chance to live longer.
“Of course there was a simple way to have avoided all of this – to have simply taken an hour out of my day, listened to my body sooner and had a breast screening test, the cancer may have been spotted earlier and treated easier. If I had just taken an hour out of my day. I implore all women to please, please listen to your body, go and get yourselves checked properly. Even though they say you should check your breasts after turning 50, I believe it should be free for any woman over 25 years of age, otherwise I think it is misleading for women. Book yourselves in when the Breast Screening bus next visits your area,” she said.
Contact the following to find out more information on Breast Screening – CHB Health Centre on (06) 858 9090 or Choices, Northumberland Street (06) 857 8694 or Breastscreen Aotearoa 0800 270 200
Original story from CHB News, Hawkes Bay available at http://www.chb.net.nz/node/520