In November 2018, a month and a half after my 41st birthday, I was diagnosed with stage 4 bowel cancer. It had come months after stomach pains, needing to go to the toilet constantly but never really passing much and suddenly not being able to drink alcohol and eat certain foods without it ending in stomach cramps and hours on the toilet.
I thought it was just my quirky bowel which I had checked five years earlier after experiencing blood in my stools. At the time it was slight irritation in my lower bowel which was fixed with a course of anti-inflammatories.
In the lead up to the diagnosis, I’d cut my trip to the States short cause I didn’t feel well and had become emotional. When I got back, I visited my GP who thought I might have a stomach bug. He asked me to provide a stool sample which came up with a bug so I was given a course of antibiotics but these made me really sick and the symptoms didn’t clear up, so I went back to my doctor. He asked me to provide another stool sample to see if the bug was still there but it didn’t show up in the results so he sent me off to see a specialist.
I called up the specialist I’d seen in 2013 whose receptionist fitted me in within two days. Within two weeks I was having a colonoscopy. Waking up in the recovery room I started to think something was not right; I was struggling to get over the effects of the anaesthetic, the clock on the wall showed I’d been under for two hours and there was a distinct sombre mood in the room.
When I could finally talk, I asked the nurse, “Was there a tumour?”
She told me the doctor would be in shortly. My doctor arrived and told me he’d found a six-centimetre tumour in my lower bowel and asked me to come back in two days for the results. It was an emotional two days as I kept the news to a very small group of people – my partner and my best friend.
Back at my specialist’s room he confirmed the tumour was cancer and as he told me what was next, I’m sure I had a look of horror on my face. This kind of thing doesn’t happen to me… Over the next week I got up to my family so I could break the news in person – telling my mum was the hardest. I felt I’d let her down as my dad died from bowel cancer and I felt I should have known better.
Then I went back to hospital for scans; CT, MRI which showed spots in my right lung that were confirmed as cancer by a follow up PET.
My specialist then referred me to my radiotherapy oncologist and chemotherapy oncologist so within three weeks of diagnosis I started on 25 sessions of radiotherapy accompanied with a low dose of capecitabine.
In January I went back for a CT scan – the primary tumour shrank and even my lung tumours got smaller and importantly no other spots developed. I was booked in for surgery to remove the primary tumour in mid-February this also came with a temporary ileostomy (bag). Whenever I thought about the surgery I’d cry as I’d never been operated on before and also the bag was something I just couldn’t embrace. Luckily, I had a surgeon that in a good way scared the crap out of me and got me to tackle it and move on. I am thankful to him every day.
I remember walking around in hospital hunched over but relieved – I’d done it! The few days after surgery were tough but gradually different tubes and drains were taken out so I could become more independent and I met with a stoma nurse everyday who taught me how to manage the stoma.
I’m lucky because I freelance and had a very understanding client who had been given me regular work for the last six months. I was able to take time off to recover and when I did go back, I worked from home which made management of the stoma easier.
In March I began eight cycles of chemotherapy (oxaliplatin and capecitabine) which started off ok but after two cycles I was really sick and losing weight as I couldn’t eat. My oncologist adjusted my dose which made things much better. At the mid-way point I had another CT scan which showed that the tumours all shrank significantly and also no other spots so I was booked in for my next surgery.
The lung surgery, I was told, was not as major as the bowel surgery but it would be as painful. I had to have a drain put in although this came out in three days. This surgery came and went and while it was painful, I managed and the surgeon was able to take out all the tumours in my lung.
To finish off the last four cycles, I restarted chemotherapy in August with a slightly reduced dose of oxaliplatin, after I told my oncologist my feet were feeling numb and tingly – a side effect of the drug.
I find myself constantly counting down the weeks that I need to get through to be finished with chemo. Even though I am having what I consider a good experience of it – not too sick and I can function with work and study - I still find it the hardest part of the whole journey. It’s like a marathon.
A very close second is the ileostomy – I love fresh fruit and sparkling water, but I can’t have either. Instead I have to eat low fibre/low residue foods like pasta, white rice, white bread, mince and stewed fruit. I also don’t have the confidence to go to the gym like I used to. Going out at night is difficult as I can be tired, and the bag fills up more at night. I tried to turn this negative around by naming the stoma ‘Peter’ and seeing it for what it is – a part of the fight against cancer.
Throughout the treatment I have really focussed on my mental health. I believe if I keep positive, I will have a better experience, so rather than losing 2019 to cancer I enrolled in creative writing at university so I could distract myself with something I am passionate about.
I was open about my cancer with the university and they’ve been very supportive, providing me with extensions when needed and being ok with me missing classes that coincide with chemo days. My study has turned my mindset around. Weirdly I began to embrace the cancer, so long as it didn’t kill me. I used it instead to motivate me to make positive changes in my life.
Another strategy I’ve used is to embrace the treatment – no matter how it makes me feel. Whenever I turn up at the hospital for treatment or procedure, or when I sit down with my doctors I smile, I joke, I thank everyone even when I am getting yet another needle.
Oh, and nothing breaks me from my routine – at 7am I walk to my local cafe for coffee. I follow this up again mid-morning and lunch time so that I walk three or four times a day.
And while I am not an overly religious person I chat to my local priest and sometimes sit in the church which gives me some solitude that is difficult to find living in the inner city. It has a little park with benches surrounded by lemon-scented gums that can be filled with rainbow lorikeets and other birds – I love the birds - they make me grateful that despite everything I am still here. Cancer has made me a little bit sentimental.
I don’t dwell on what I should have done but thinking back the signs were there for months. Bowel cancer made its presence known ever so subtly so my advice is if you think something is wrong talk to your doctor.
My father and both my grandmothers died from cancer. I am determined not to join them. Things are going well so far but I don’t take it for granted. I also figure it’s up to me to live the best life I can.
There are so many people I am grateful to – my GP, my surgeons, my oncologists, the nursing staff, my therapist, even the blood collector, friends, family and my partner who stands by me and stays strong even when I falter.