Tara Scott picked up the phone. Shocked and frightened by the diagnosis of uterine papillary serous carcinoma she reached out to Cancer Connect to learn more about the cancer she had to fight.
Her thoughts were of her husband, Col and their two children, Annika and Jack – at just 39 years of age she needed to survive and was desperate to know more about the rare form of cancer.
The call “was pretty horrific … they said there was no-one in Australia that was alive that I could talk to. It freaked me out completely.”
That was August 2014. Two years on Tara is alive and living “a new normal” that is the outcome of a fight that is not over and a treatment journey that saw her almost lose the ability to walk and talk.
Tara will be one of many cancer survivors who will share their experiences of the public health system at an education day hosted by The Centre for Community-Driven Research at Club Taree on Monday, October 24 at Club Taree from 12.30pm. The event is to provide health professionals and the government with the opportunity to listen to the experience of patients. It is a first for Taree and will give Tara access to federal assistant minister for rural health and member for Lyne, Dr David Gillespie.
Tara radiates joy as she speaks of her journey and says she is thankful for the discovery of a fibroid on her uterus that triggered her decision to have a hysterectomy – without that surgery and post-operative testing her cancer would not have been discovered and she “would have been dead by Christmas.”
“We found it by accident. Two-and-a-half weeks after my hysterectomy I got the call to go back to see my gynecologist Dr Brigit Strong.
“The pathology had shown the cancer and it was stage 3c1 and it only goes to stage 4.
“I was the only one in Australia with this cancer and it had spread from the muscle of the uterus to an ovary and lymph node. So six weeks after my hysterectomy I was opened up again in John Hunter Hospital in Newcastle to have the lining of my abdomen, ovaries, fallopian tubes and the lymph nodes in my pelvis removed.”
The surgeries were the beginning of a treatment journey that challenged Tara and the professionals working to keep her alive.
“The doctors didn’t put me in the too hard basket and worked to find a treatment. They had to go overseas to find a treatment that had been done on other women who had my type of cancer.”
That treatment included a radiation and chemotherapy regime that tested Tara’s capacity for pain and her emotional and physical resilience but she says her resolve to endure and survive never wavered.
For 27 days she travelled daily to Port Macquarie Base Hospital for radiation and then every three weeks she sat in a chair for seven hours for chemotherapy. Family and friends rallied to support her and set up a roster to drive her to and from Port Macquarie. She says the choice to travel daily was her decision and vital to her need to be able to lovingly support her children.
“They (medical staff) wanted me to go to Port Macquarie for five weeks and come home on the weekends. I couldn’t do that. I needed to come home every night and I wanted to get the kids to school and to be there when they got back. The only time I wasn’t able to do that was when I also had chemotherapy because it required seven hours on the drip.”
Tara says a reaction to the chemotherapy saw her lose the ability to walk and talk properly and describes the pain as “horrific.”
“I was on a form of opium patches for about three months to deal with the pain and it was suggested that I could end up in a wheelchair.
“The oncologist Dr Stephen Begbie and radiation specialist Dr Carmen Hanson said to me, ‘Tara we can’t give you any more chemotherapy’. I was shocked and asked why and they said the reaction had happened to one other person in the world and if we continued I could end up a quadraplegic and not able to walk or talk. I burst into tears and said, ‘I need to beat this thing’.”
Tara says she is not in remission but is thankful her ability to walk properly has returned after eight months of therapy.
“Unfortunately there are no tests that show up my cancer. It won’t show up on a PET scan, CT scan or on an MRI, there is no specific blood test, so we just have to go on how I am feeling and an internal visual. I get checked every three months and it’s all we can do.
“I know that I am lucky. People say that I should buy a lotto ticket but my husband Col says, we’ve won Lotto because she is still here.”
Tara hopes the local cancer community will act to attend the event on October 24 and says “it’s important for cancer survivors to connect and to talk because our experience matters.”
She speaks highly of her experience in the Australian public health system.
”Absolutely everything I needed I was given. The surgeries were done at the times that I required them.
“I hear people complain about our health system and some people have said, ‘but you had to drive to Port Macquarie every day for five weeks for radiation’. The way I see it is that if I lived in Sydney I would also have had to drive 45 minutes to get treatment.
“I honestly believe we are very lucky where we live and if it’s urgent and it’s life threatening – the treatment is there.”