It was found by accident. I had never been tested for it because no-one considered for a second that someone of my age and basically healthy would ever have bowel cancer. There is no family history at all. After many months of abdominal pain I went in for surgery to remove adhesions and fibroids on my uterus. When they opened me up the surgeon basically said, "What the heck is that?!" It was a total shock for everyone. I refused to start my treatment until after my honeymoon in New Zealand because I had spent too long planning all those Lord of the Rings tours. The day after I got home I had my portacath inserted and the day after that I started six months of chemo.
It was a very hard time, and mostly for reasons other than what you would expect. Some of my family did not deal with the diagnosis very well. Early on my mother would phone me and yell at me as if I had done it on purpose. My husband simply pretended it wasn't happening and that life was carrying on as per usual. I do understand why they reacted that way; they were both in terrible shock, but it still made everything that much harder. Luckily my father was supportive, but I felt very alone. I also felt like a fraud: I lost only about a third of my hair but because I have lots to begin with no-one but my mother and I could tell; I didn't lose weight; I was young; I looked fine.
Every time I was in the clinic I was waiting for someone to tell me to get out of the chemo chair because they were only for patients. My nurses were wonderful but I never felt comfortable and I refused every bit of support that was offered to me because I was convinced I didn't deserve it. I was a young woman but I didn't have breast cancer so there was no information or resources for me. The chemo made everything taste awful, especially my beloved morning coffee. Salty popcorn, mashed potato and tea with honey were my saviours. I continued to work the entire period, a week in the office and then a week off for chemo and those following days when I was too sick to move or think. I didn't tell anyone but my team and I think everyone thought I was a junkie. I had to give up my volunteer job at the local zoo, which was very distressing, but my immune system would be too compromised. I was told to get rid of my dog for the same reason but I told the oncologist that was never going to happen; my dog was my biggest support and the thing that always kept me going. I survived my chemo, watching all the seasons of Buffy the Vampire Slayer in the chemo chair, and after it all finished I just tried to get my life back to normal.
Less than two years later the pain was back and, again, surgery for adhesions discovered a piece of the initial tumour that had been missed. This time I had three months of constant chemo as well as radiotherapy. I was told that I had a week to decide if I wanted to have my eggs frozen because after the radiotherapy I would be infertile. For many reasons I decided not to do this and so at age of 30 I went through menopause and lost the ability to have children. I remember one of my first ever Facebook posts, when it was still a brand new thing, was "Sarah is feeling sad about the fried eggs". My grief was huge but I couldn't share it with anyone. Again I survived my cancer treatment pretty well, continuing my office job throughout but having to miss out on spending time at the zoo. I do remember laughing a lot about the fact the radiation gave me sunburn on my butt. After this treatment again I strove for a normal life. At the zoo my favourite bears had a cub and I deflected a lot of my sadness from my infertility into loving her. I also got myself a new puppy.
Several years later, I was getting on a plane to Europe but abdominal pains were bothering me so much that I bought some antacids to have during the flight. During the trip the pain got worse and worse and I remember the exact moment in London when I had to stop walking and leant on a wall because the pain had become so extreme I couldn't stand up. Then I knew the cancer was back. I had been having three-monthly blood tests, and they were always clear, and I had an ultrasound where the technician assured me there was no way I could have bowel cancer, but I was right. A CT scan showed a brand new tumour on the other side this time. I had to have a blood transfusion before my surgery because I was so anaemic even though I had never noticed anything. I had a bit more than half my large intestine removed which, along with the section I had had removed by the first surgery, left just enough to not have to have a stoma.
I was welcomed back to the chemo clinic by my favourite nurses and this time I made an effort to accept the help offered and to try to relax. Chemo was actually physically tougher the this time around, even though I was an old-hand with the process and my family were hugely supportive. I lost a lot of weight but still felt guilty that I kept most of my hair and still looked pretty healthy. I briefly trialled a different drug but it made me unable to walk and all the skin on my feet peeled off, so that was a no go. Again I couldn't volunteer at the zoo but, with my mother to physically lean on, I visited my animals a few times. Otherwise I spent a lot of time curled up on my couch staring into space because my brain had turned to mush. Since this was my second primary tumour I had genetic tests but none of the known markers were found. Apparently I just have very bad luck.
I have now been declared officially in remission and I forget all about it most of the time. I have always been determined that cancer not be what defines me and that continues. I am on HRT so my bones don't break, I take vast quantities of anti-diarrhoea drugs to get through the day without living in the bathroom and I have an impressive collection of scars but otherwise I am the same person; if maybe a bit less concerned by what others might think of me.
The spectre of cancer is always there, and I am convinced that it will come back again one day. So I am very much into living life in the present and enjoying life right now. I have a good office job but I also now work part-time at the zoo. I get paid less but doing what I love is more important than money. Apart from those gaps during chemo I have been there for almost 14 years and it has been a consistent positive in my life; a cause I believe in and something outside myself to focus on. I am now the resident expert in building enrichment for the animals; I build toys and puzzles, and structures like ladders and hammocks to provide fun and mental stimulation so the animals have the best life they can. This also helps with breeding the endangered species we have because happy animals have babies, and that is something I am passionate about contributing to. I also volunteer to take part in relevant scientific studies whenever I can because I feel like anything I can take from my experiences and contribute to helping others in future is really worthwhile.
Through all my treatments and hospital visits I constantly heard "Oh, you're so young". I know it was an expression of surprise and pity but this always annoyed me because I felt like they didn't believe I should be there. The only thing that made me angrier was "Oh, you're so brave". I really hated that because I never saw that there was any other option. I would have loved to be "un-brave" but I couldn't. I just had to get on with it whether I liked it or not. I'm not a hero, I am a survivor.
As someone who usually cares for others and is fiercely independent, I have found it very hard to accept help. Once I had come to terms with it, I actually quite enjoyed my time at the chemo clinic because it was time where I couldn't help with anything; I just had to sit back and have someone else look after me. My main advice to other women is to accept all the help you are offered. You do deserve it. I do sometimes wonder if I am the only one who feels that way, but I suspect I’m not.
Share your Kick Ass Story
In celebration of International Women’s Day (8 March) each year, Bowel Cancer Australia raises awareness of bowel cancer in women and shares empowering stories from Aussie women who are kicking bowel cancer’s ass.
Are you a kick ass woman living with or beyond bowel cancer, or do you have a female family member or friend that is?
We’re seeking female volunteers of all ages to share their experiences to help raise awareness of bowel cancer in women as part of our annual Kick Ass: Bowel Cancer In Women initiative in March.
Share your own story and help us kick bowel cancer’s ass.