It was around February 2010 that I became conscious of my symptoms. I was living with my partner, Yoshi in the States studying towards a MA in Geography. I remember going on a mountain bike ride and experiencing periodic severe lower abdominal pain. As time progressed this pain would become more frequent. Most nights when I lay down I could feel a hard lump in the lower, right hand side of my abdomen. I was consistently getting bouts of diarrhea. I put these symptoms down to the stress of trying to get a thesis done, and a few too many carne asada burritos.
I visited my GP around this time for a cervical smear test and I mentioned these symptoms. She couldn’t feel the mass because it was semi mobile and, at that very moment, had floated away from her touch. However she ordered an ultrasound and blood tests. The blood tests revealed I was anemic, a classic symptom of bowel cancer, and I was advised to take iron pills. The ultrasound detected lesions on my liver, so an MRI was ordered. From the MRI the lesions were diagnosed as hemangiomas, or non-threatening ‘birth marks’ often found on livers. I was advised to get a colonoscopy. However, I decided that going to Central America was a much more enticing option. I had just graduated and I wanted to do some traveling with Yoshi before I headed back to New Zealand, while he undertook research for his sabbatical.
Upon returning to New Zealand the pain was becoming more frequent and severe. I was also rapidly losing quite a lot of weight unintentionally. I visited my GP who explored the possibility of coeliac disease. The tests came back negative. I visited another GP and became uncharacteristically hysterical about the pain I was experiencing. Another ultrasound was ordered with the results prompting my GP to urge me to go to Southland hospital. This was followed by a biopsy, a colonoscopy and then surgery to remove the primary tumour in October last year.
I am 29 years old and I have advanced colorectal cancer. The diagnosis in America of hemangiomas was incorrect and I have metastases in my liver, lymphatic system and lungs. This cancer is aggressive. I have had six rounds of chemotherapy, three on the CAPOX regime and three on a combination of FOLFIRI and a monoclonal antibody called Avastin, the latter of which is funded by my US insurer. Unfortunately my tumour marker count and liver function tests are all trending in the wrong direction. Next week I am going to try a different combination with FOLFIRI and Cetuximab, another type of monoclonal antibody.
On a personal level I don’t identify with the battle analogy that is often associated with cancer. I feel more like I’m on a slow moving train wreck with the cancer driving, me riding shotgun, and my friends and family all standing on the platform. However I still maintain some hope. My oncologist, Chris Jackson is working hard to put the brakes on. I feel very fortunate to have an oncologist who is so supportive, knowledgeable and approachable. My family, friends and wider community have provided me constant support throughout this whole ordeal, and I feel quite humbled with the amount of generosity and love I have received.
However, from a public stand point I feel like I am part of this ‘war on cancer’, particularly bowel cancer. I want to tell my story because, if caught early, bowel cancer is often treatable. Despite it’s prevalence in New Zealand, it doesn’t receive the attention it needs. Southland and Otago have the highest incidence of bowel cancer in the developed world. Bowel cancer kills three times more people yearly than the national average road toll. Its mortality rate is only surpassed, barely, by lung cancer. Despite my age, the symptoms I experienced were classically textbook. Not only must the public and primary health care providers become more aware of the early warning symptoms of bowel cancer, but the government must respond with resources for colonoscopies after a referral is made. A best practice model is a two-week waiting period between a referral and a colonoscopy, but at this point many people with similar symptoms to mine are waiting up to six months for a colonoscopy. Six months could be the difference between the removal of a polyp or primary tumour and the cancer spreading to other parts of the body.
I am going to die from a potentially treatable cancer. I hope my story highlights the symptoms of bowel cancer so other families and communities may avoid the painful journey I am currently undergoing.
It is with much sadness that Bowel Cancer New Zealand wish to advise of the death on Sunday July 10th of our member and friend Claire Wilson aged 30 years.
Although Claire had advanced bowel cancer when she joined our charity in late 2010, she was selflessly committed to raising awareness of bowel cancer in the hope that her story would save others from a similar painful and needless experience.
In the short time Claire had left she worked hard on our behalf to promote bowel cancer awareness. Many will have seen her, with Dr Jared Noel, tell their stories on the 20/20 programme during our recent bowel cancer awareness week. Her story and her bravery at such a difficult personal time has had a powerful and lasting impact on everyone who watched the programme and ensures that her courage and her message will live on.
Even up to the last, Claire’s focus was on helping others to beat bowel cancer. She will be hugely missed by all those who had the privilege of knowing her.
Bowel Cancer New Zealand is committed to carrying on the bowel cancer awareness work that Claire was so passionate about.