Surviving cancer is a whole new battle. For cancer survivor Nicolle James, still trying to come to terms with her battle with the disease, surviving begins with diagnosis and continues over long term treatment to reduce the risk of recurrence.
“Survivorship is unpredictable, it is a battle and it is starting over. I am still trying to live in survivorship because being cancer free is not an automatic pass that you will remain that way. Survivorship is a dark cloud, that is how I see it,” James said in an interview.
The mother of two understands the challenges only too well as she recently had to tell her family that the disease may well have returned to torment her.
“I just had to tell my family last weekend that I went for my check up and they (doctors) found something on my liver and they (doctors) are pretty worried,” she related.
“I remember talking to someone when I went back for my visit… She has been a survivor for 25 years and here she is now saying how the cancer came back and it is so aggressive, and all I could say was ‘after 25 years’. She then said to me, ‘Nic, that is cancer, you can never be fully cured from cancer, it just means that what they were able to do is stop this one, but cancer has different families. You may not get the same type of cancer but you could get it somewhere else.
“Survivorship is work, it is hard and a lot of people don’t understand that,” James said.
James was first diagnosed with cancer when she was 31. She noticed changes in her body and knew something was wrong.
“I went to the doctors but they kept saying that they were not seeing anything. The pain was unbearable, the longer I waited the more the pain increased. The pain was unreal, it sometimes paralysed me. My stomach started swelling and I even started passing out at work and bleeding on myself. I know something was wrong. I was determined to find out what was happening to me,” she recalled.
Unable to get any answers from her doctors in Tobago, James decided to travel to Trinidad where she thought the medical system must be better.
“I went to a doctor in Trinidad and even there no one knew what was happening…I felt as though something inside of me was opening up and blood was gushing out. I started to google my symptoms and it pointed me to cancer, then a friend referred me to a doctor. I went to the doctor’s office and I explained my symptoms and he too was saying that I am too young to get cancer,” she said.
James said this doctor finally decided to do a colonoscopy on her and two weeks later she got the news - she had stage three colon cancer. It was not something she was prepared for. She was then an athlete who had recently returned home to Tobago from a basketball scholarship. She began chemotherapy on her 32nd birthday.
“I always watched what I ate, and I thought I was healthy, but at 31, I was diagnosed with stage 3 colon cancer and my response was ‘I thought this was for old people’. My grandfather died from colon cancer but still we didn’t really see the need to educate ourselves as much because as far as I was aware it was a ‘old people thing’ and here I was at age 31 with four-year old twin children and I had colon cancer.
“Cancer is a mental thing, it is 90 percent mental. I did two surgeries here in Trinidad and Tobago and then I went to the United Stated when they told me that I had a third one to do. In total I did five surgeries and then they started on aggressive chemotherapy because the cells had already started to spread,” she said.
With the love, support and encouragement of family members and her doctor, James completed an entire year of treatment that involved 12 rounds of chemotherapy, among other treatments. She was told that she was cancer-free.
Now, in understanding the challenges that comes with being diagnosed with the disease, she is turning to time and energy to helping others deal with the disease and has launched her own foundation, the Hope Matters For All Cancer Foundation.
“The support systems are important,” she said, explaining that the Foundation is to inspire persons to speak out and send a message that being diagnosed with cancer was not the end.
“Some people are still battling and they look for different ways to motivate and encourage themselves just to face what for them is a nightmare. It is important to have support groups and I am basically trying to build something that wasn’t just my dream to get up and start. I believe this is something that the Lord spoke to me to do. A lot of people don’t understand why I would have started that Foundation because I myself am a cancer survivor and still I am battling.
“I started it because of my journey and what I went through, I recognise that there is a need for that sort of support, holistic support in Tobago,” she said.
Recently, Secretary of Health, Wellness and Family Development Dr Agatha Carrington, said Tobago will be collaborating with Washington University School of Medicine and Rutgers Cancer Institute of New Jersey, USA, to conduct cancer research on the island to “assist us in acquiring current data to guide our decisions (regarding) our cancer clients”.
Carrington also said Tobago will have “the first, publicly-funded Cancer Treatment Centre on the island with the Executive Council having approved the creation of a sustainable public-private partnership to provide holistic cancer treatment services.
Carrington said diagnoses affect both patients and their loved ones, and the support of family and friends was needed along with treatment to aid recuperation.
“Quality of life is holistic and takes into account the physical, social and psychological factors of that client,” she said, as she pointed to several factors, such as patients’ financial status, interpersonal relationships and diet changes, as having an influence on recovery.