My name is Ellen and I was diagnosed with bowel cancer just after my 38th birthday.
At the time I was diagnosed I was busy and tired, as many people are at this stage in life. I was working almost full time in disability advocacy, had a family and was studying my Masters. At that time I was experiencing a bit of anxiety related to my job and while I had experienced some change with my bowels, it seemed to subside when I reduced my stress levels. Over the next two months I saw a couple of GP's, who both didn't seem to be concerned at all, despite some of the blood tests ordered showing iron deficiency.
I saw a third GP in early February 2020 because I was struggling with anxiety at the time and some workplace issues. She immediately noted my iron deficiency and we discussed what was happening with my bowel. She sent me to do a faecal occult blood test and a calprotectin test, which measures inflammation in the bowel. The FOBT was three for three positive, and the calprotectin test was sky high. I honestly did not expect this at all. The symptoms I experienced were not impacting me much, if at all. When I went back to the GP she asked if there was any chance I could pay for the colonoscopy, as I didn't have private health insurance. Despite my pathology putting me in the 'urgent' category, in Tasmania the wait time for an urgent colonoscopy was 8 months. I was lucky enough to be able to afford the colonoscopy and I was referred to a private gastroenterologist who phoned me the same morning to book me in for three day's time.
I never imagined that I would have had bowel cancer, but the colonoscopy showed a large mass in my caecum. It was so large that they could not get beyond it. I was referred back into the public system to see a colorectal surgeon and got an appointment five days later. At this appointment we learned the struggle to access prompt surgical treatment, within the recommended time frames, in regional Tasmania. The surgeon told us that he only performs surgery in the public system on Mondays and he already has a bunch of people before me and there is a public holiday coming up. I was angry and honestly terrified. I was angry that we were left hanging, not knowing what date we were even going to get, let alone how far away it would be. My CT showed that it looked like it had spread to my lymph nodes. Every day waiting was a day wondering if this was the day it would spread further. It's such a feeling of desperation and frustration at this time, particularly knowing that it is nothing but a failing health system letting you down.
During this time I accessed the Cancer Care Nurses and support organisations. They made the process a little bit easier and harassed people in the health system with phone calls to try and move things along sooner or get me updates. This was also the time that I really dove into what I call my cathartic craft. I had always been a cross stitcher since my grandmother taught me as a child, but through this stage of not knowing and waiting it became really important to me. Through this process working towards the 'next step' was what kept me going, but when you get to the point of just waiting and not knowing there isn't really a 'next step' that you can take. I made my next steps my cross-stitch and deep dove into cross stitching profane and snarky stitches. There is nothing quite like stitching your feelings in memes and quotes!
I eventually got my date and I did have my surgery, a right hemicolectomy. I was one of the 36% of Category 1 patients in Tasmania that do not get treated within the recommended 30-day time frame. My lymph nodes also ended up being clear. I was Stage 2 and I opted for no further treatment and I am now in remission.
I was very lucky.
But beyond luck, I hold a lot of privilege. I could afford to pay for that colonoscopy. I have found, and continue to find, the health system incredibly complex to navigate. It is ultimately not a system built for the patients. But I have skills to advocate for myself, to know how to get answers, how to make things happen, to have the confidence to keep asking questions, many people out there do not have that privilege. There is absolutely a disparity in the access to health care for those that have money and those that do not. Everyone deserves fair and equal access to health care and your income or disability or the size of your body or your mental health or any other personal attribute shouldn't determine the quality of treatment that you receive.
Post treatment I had a number of appointments with Genetic Counsellors and was diagnosed with Lynch-like Syndrome. For me this means very close monitoring for the rest of my life and, in the future, preventative surgeries for other lynch related cancers, such as endometrial and ovarian cancer. I am just about to come up to my two-year cancerversary this week and these days I use my experience to try to make change in the health system. I am working in community development and am also a consumer representative with the Tasmanian Health Service and just recently joined the Ahpra Community Advisory Council. I want to work to highlight the issues regarding patient access and ensure that the patient voice is central in decision making to improve the system. I am still stitching, so if you want to check out any of my snarky cross-stitch I have an Instagram account @theangstystitcher. And, for any Tasmanians, if you want to talk about the health system please get in touch!