29 JUN - 2021
If you’ve been moaning and groaning ‘woe is me’ and can’t find a silver lining to your life, this story will definitely shift your perspective.
Science says that 31 is the sweet spot for a typical woman’s life. I read this a while ago and it gave me a lot of hope that my life was on the up and up when things were seemingly dire. At this age, the average woman has settled into her career and is making a decent bit of money, has an epic wardrobe and feels secure in who she is and what she wants. But right before the apparent age of peak happiness, Tamsyn Cornwall was told she had the big C at 30 years old.
Tamsyn is one of the most kind-hearted and gentle women I have ever met. Soft spoken, beautiful and elegant, she radiates an almost holy energy - major angel vibes. Looking as good as Tamsyn, you would think she would be one of those girls on Instagram who cast a dream-like facade of an aspirational life that is unachievable for many. But when you delve deeper into her content and what she stands for, Tamsyn is all about promoting transparency and awareness on real aspects of life.
Since she was only 8 years old, Tamsyn struggled with ulcerative colitis and during level 3 lockdown in August, the doctor gave her some news that would have been debilitating for anyone. To be told you have stage 3 bowel cancer at the young age of 30 - we can only imagine how head-spinning that would have been.
In both of our efforts to help people know that they are never alone with their struggles, Tamsyn shares her story, no holds barred, on living, learning and defeating cancer.
Nothing can ever prepare you for hearing the words “you have cancer.”
Sophie: You were misdiagnosed with Crohn’s disease when you were only eight years old. What were your symptoms like back then? Looking back after all these years, how do you feel about the misdiagnosis? Did it make you lose trust in the healthcare system?
Tamsyn: I was extremely sick during my diagnosis. I had extreme pain to the point of screaming. I had blood in my stool, felt incredibly nauseated, was significantly fatigued and my mood was all over the place... I understand now that Crohn’s Disease (which affects the whole GI tract) and Ulcerative Colitis (specifically affects the colon) although are different, are also super similar in terms of symptoms and treatment plans. However, being that young, I didn’t even question the medical team and it baffles me now that I was misdiagnosed for 22 years - it made me lose a lot of trust in the healthcare system.
Kids can be so brutal about the smallest things that are different to them. Growing up with Ulcerative Colitis, what was it like to attend school and how did it affect you?
I was really private growing up. I never wanted to be ‘pitied’ or ‘treated differently,’ so I think because I didn’t communicate what I was going through, I was hugely misunderstood. Before my diagnosis I was really into athletics and swimming - and then, I could barely even run, let alone play sport, so I was often viewed as letting the teams down.
It was really hard being so sick and trying to also focus on school work. There were many times where I couldn’t attend school due to having bad IBD symptoms which lead to me having long absences which kids couldn’t fathom - they would often assume I was “faking.”
I think being so skinny was really tricky too, as people would name-call, saying I should “eat a burger” or thought I had an eating disorder... I always tried to hide running to the loo, and remember always turning the tap on so no-one would hear I was pooping…
I also had a moment before final high school exams for my international baccalaureate where I had an intense panic attack as I was so sick and anxious about having to use the bathroom too often and walking into the test room. I ended up only getting a certificate for finishing school rather than a diploma. It was super confronting and embarrassing for me.
Being a teenager is a confusing whirlwind in and of itself. High school would have been quite tough for you. Do you feel like you had to mature quickly?
I was really good at looking after myself, taking my medicine, eating healthy etc, but I think it’s tricky when so much was out of my control in terms of being well. I would often miss out on parties or feel awkward at sleepovers.
What was your normal? From the food you eat to your bathroom schedule and life choices, it must have been quite difficult to manage day-to-day activities and wrap your head around why things were so different for you, especially when you were young.
Everyone's normal can be quite different, but for me, I moved around a lot due to my dad managing resorts working in the Tourism Industry - so this meant homeschooling when I lived on different Islands in Fiji and when I lived in Thailand. And also while changing schools from Fiji to Australia to New Zealand and back to Fiji.
Also, diet was hugely important for me as there are certain things I can’t digest like skins on fruit and veges which I had to peel off, and I'm also gluten intolerant.
Ever since I was little, I’ve pretty much always had to have a nutrition drink to ensure I get all the vitamins and nutrients I need (or can’t digest). Adjusting to many different factors - meeting new people, travelling to different towns and countries is hard enough - but I also had to also accept my illness, the unpredictability of my symptoms, all while I was still figuring out who I was, you know? You’re so impressionable as a teenager. All I wanted to do was fit in, so it was hard - it was hard to commit. Like, what even is my normal? Hahaha I don’t even know. Travelling also had its perks though! Ahhh, I miss that.
What were the unnoticeable things by others that were difficult for you?
Eating out was always a challenge, sometimes I was so sick I’d just be on a liquid diet and people would just be like, ‘wait, what?’ I think going on trips with people, I would always be consciously aware of where the closest bathroom would be. Also, because when I was so sick my fatigue would be bad, I would normally have a ‘rest day’ before I did an activity, then a ‘rest day’ afterwards to kind of recover.
As an adult, how did Ulcerative Colitis affect your work life and travel aspirations? You’ve worked in so many different jobs in lot’s of places. Did UC limit you in your dreams?
Yeah for sure, I think in a way, I’ve become quite resilient because of this. There was one time where I was medically evacuated from Fiji and had to go straight to the hospital and leave a marketing job I absolutely loved. But yeah - wow, there were many instances where I’ve had to leave jobs or not been able to go on holiday somewhere because of my illness. It’s not easy and can be super isolating.
You have a boyfriend! I’m so happy that you have found someone kind who is so open and accepting. How did Ulcerative Colitis affect your previous relationships? I’m sure it wouldn’t have been easy to be transparent at a young age with friends and boys.
I am SO happy, literally so smitten! Thank you! I think having someone who is incredibly accepting, understanding and caring has been such a breath of fresh air. In a way, I am really glad that I’ve been so open in real life and on social media, as it has definitely taken some of the difficulty out of having those harder conversations.
I also think over the years, I’ve built up many coping mechanisms which has, in turn, allowed me to be way more accepting of myself, and although having IBD is a huge part of my life, it also doesn’t define who I am as a human. But yeah, running to the loo heaps doesn’t exactly set the mood hahaha.
Were you ever discriminated against in society because of your illness? How did this impact you?
Yeah, for sure. I’ve had a lot of disbelief due to how I look on the outside, or how chill I can be when I talk about things, so there have been many moments where people haven’t believed that I’ve been sick.
Also, there was a moment at a bank where I was asking about health insurance, and when I told the lady I had a pre-existing medical condition, she was super rude, scoffed, looked me up and down and I walked out and had a massive cry… This really put me off even talking about medical insurance or life insurance. I also have been bullied for having a disability car permit. People can be extremely judgemental.
Receiving the news of the Big C last year, it must have been soul crushing. What was going through your head when you were told by the doctor about your colon cancer, especially during level 3 lockdown?
I was absolutely heartbroken, I couldn’t stop shaking, crying... Nothing can ever prepare you for hearing the words “you have cancer.” Soon after my diagnosis, I had a farewell colon surgery (subtotal colectomy), did an egg freezing process (two rounds as the first round was unsuccessful), and did six months of chemotherapy. It has been ridiculously difficult.
Leading up to the news of cancer, what were the telltale signs? And what advice would you give to people who are having health problems?
Similar to an IBD (inflammatory bowel disease) flare, I had extreme pain, debilitating fatigue, increased nausea, needed to use the bathroom more frequently (up to 15 times a day), and when I looked at my poop it looked like a crime scene in terms of how much blood there was. It was really scary. In terms of advice, I can’t stress enough how important it Is to listen to your body. It is 100% worth having an uncomfy conversation and seeing your doctor.
There are so many collateral problems that you need to address with surgeries and chemo treatment. Can you tell us about the egg-freezing process you had to undergo due to the risk of infertility from chemo?
There’s always an added risk of infertility from any abdominal surgeries and having chemotherapy. So I started my egg freezing process 10 days after my massive surgery, and it was honestly one of the hardest things I’ve ever done. I remember sitting on my bed for an hour sobbing, trying to build myself up to injecting myself with hormones.
Going through a recent diagnosis, recovering from surgery and being filled with hormones is extremely overwhelming. I knew it was something I wanted to do though as I wanted to make sure I was doing everything I possibly could for my very hopeful future of having a child one day.
I’ve never seen anyone who rocks a stoma bag quite like you do. It’s admirable that you are making such an effort to normalise it when typically, people would be ashamed to share such a thing. When did you start raising awareness about your own health issues and how did that come about?
I started being super open about having IBD (Inflammatory Bowel Disease) about 7 years ago. For me, it was more about doing it for my younger self, as I had no one to look up to when I was 8 and being so sick.
My illness is invisible, but I am not, and by talking more about our own realities, we in turn make other people feel comfortable enough to talk about their realities. We all go through different things, right? And thank you! I 100% want to normalise talking about poo, reduce its stigma and I honestly am so grateful for my scars, for my stoma, as they are beautiful proof I still exist.
I am alive, and for this, I am so grateful.
You are unrelentingly positive and your sunshine state of mind is incredible. How have you learnt to be so immensely grateful despite the hardships you have experienced?
Having been sick for most of my life, I have always wanted to be as healthy as I possibly can and I think that’s always driven me to take care of myself, eat well, do exercise etc.
Don’t get me wrong, I have many moments where I just cry, get upset, frustrated etc., but I also actively make choices each day to do things that I enjoy, like meditating, going for a walk to the beach, playing guitar, being surrounded by people I love, watching reality TV shows... And by actively choosing those things, I’m so much happier for it. I’m so happy to be alive.
Our peers are overworked and burning out and whether it is related or not, as of late, there has been lot’s of awareness about mental health. From someone who has been so close to death, what is your advice for those who are under stress and working themselves into the ground?
Resting and giving ourselves self-love is so fucking underrated and so, so important. Our health is our wealth and by taking better care of ourselves, the more we can enjoy doing what we love.
Where to from now?
I am currently committed to doing the Move Your Butt challenge, where each day I’ll be doing little bits of exercise to not only build my strength back after chemo, but to also raise further awareness and funds for Bowel Cancer New Zealand.
Lastly, what is the best piece of advice you have received?
You get to choose how you react.