Ella R’s story

I was 28 at the time of my diagnosis but I was sick for at least six months before they found the cancer. I kept getting misdiagnosed with IBS, Crohn’s Disease and because I suffer from chronic migraines, doctors blamed my low haemoglobin, anaemia, extreme abdominal pain and the blood I was vomiting up to stomach ulcers from NSAID overuse from my migraines.

When no ulcers were found they sent me home saying everything will be fine now but the blood in my stool and the extreme pain in my stomach persisted. I had a lump in the lower left side of my stomach for the longest time, but every doctor told me it was hard stool that needed to be passed and would prescribe me eight sachets of Movicol as I wouldn’t have a bowel movement for four to five weeks at a time, consistently. Still, this didn’t seem to worry anyone.

Because I had so much blood in my stool, I took two bowel screen tests at separate times which both came back negative. Cancer was never once something anyone considered I could have. I was so tired, fatigued and would find myself sleeping all the time. I had zero energy, was in constant pain, lost so much weight – I just kept getting sicker and sicker. I went to my GP one day when I couldn’t stand the pain any longer and she took one look at me and knew something was wrong. ‘I’ve never seen you look so sick,’ she said, ‘you desperately need a colonoscopy.’

She rang so many different doctors right there and then to see who would take an uninsured patient who was willing to pay for the fee upfront. After a good fifteen minutes of calls, she finally found a gastroenterologist who would do the procedure.

Before I went in, the anaesthetist was so kind and honest, he was the first to bring up the ‘C’ word but did so in a way that was gentle, trying not to scare me that this may be a possibility. They found a mass in my sigmoid colon. That hard lump I had in my lower part of my stomach that everyone said was just hard stool was cancer. Once they found the mass, I was rushed from the private hospital I was into the main public hospital to get scans and further (including a sigmoidoscopy).

They found that my liver was riddled with cancer and that there were also suspicious spots on my lungs. I had Stage 4 cancer.

It hit me like a tonne of bricks. When my mum and I were taken into a separate room to be told the news, we knew it would be bad, very bad. A junior surgeon delivered the news and she did so very poorly, basically telling us there was nothing they could do, that the cancer was too advanced and that it was very serious. It was the worst day of my life. I thought my life was over right there. It took me months to get over that trauma.

Everything after they found the cancer happened very fast. I had a procedure to get a portacath for my chemo and I started my treatment two weeks before Christmas. My oncologist was great (and still is) he said that we would tackle this as aggressively as possible and that because I’m young and fit I should be able to handle such high doses of chemo.

I started the treatment FOLFIRINOX. The first few cycles of chemo were hell. I thought I would die. How could my body go through this? But slowly my body adjusted, and I got better and better. Now when I get chemo, I don’t feel sick at all. I still get tired, and I still have pain (and a little nauseous sometimes) but medication and rest helps with that.

My oncology team told me my cancer was incurable, inoperable and that I’d be on chemo for life. But recently I just had a bowel resection after having extremely great PET scan results, results better than my doctors could have ever expected. The cancer in my liver is still there and is inoperable right now but it is currently inactive which made it possible for me to have bowel surgery.

I have a stoma and colostomy bag now and am still having chemo but taking each day as it comes, getting better and better. Hopefully one day I’ll be well enough to have liver surgery too.

This was never possible before but there’s always hope and I’m getting better every day. Stage four doesn’t have to be a death sentence. But we need to create more awareness for young people, because the earlier the detection the better.

---

2022 update:

I was 28 years old when my mum and I were taken into a separate room at the hospital were given the worst news of my life. There in that room we were told that not only did I have bowel cancer, but that it had spread to most of liver and it was bad. My mum, breaking down with tears, asked the surgeon ‘can you give us any hope? What can we do?’ But the surgeon said the cancer was too advanced and to expect the worst. That day my whole world came crashing down.

Backtrack to six months or so before, where I had been incredibly sick and had exhibited most of the signs of bowel cancer – blood in my stool, extreme abdominal pain,

severe weight loss, excessive fatigue and tiredness, I was vomiting up black blood, and I was constantly in and out of hospital. But because of my age I was constantly dismissed, disregarded, and not taken seriously, and I kept getting misdiagnosed.

Fast forward to today, I’m getting the best care possible. I had a bowel resection surgery in June 2020, where they took out 30cm of my sigmoid colon and put in a temporary colostomy bag, and there’s only a few small scattered spots of cancer left in my liver. I’ve beaten the odds, and the awful day in that little room where my mum and were told that I was dying feels like a bad dream.

My mum is my rock. She has been with my every step of the way since my diagnosis. She sits in a chair all day long while I get chemo, she comes with me to all of my appointments for me and always takes care of me when I’m sick. My mum has spent many nights in a sleeping in an uncomfortable chair when I’ve been admitted to hospital, and when she couldn’t stay the night she’d make sure she would be there early in the morning right after breakfast, staying with me all day until I went to bed. She is not only my mother, she is my carer, my nurse, my secretary, my friend. She is the most important person in my life.

I also can’t emphasise enough, the importance of friendship. There are so many amazing women in my life, all my Aunties, cousins, and my both my grandmothers, but I’m also incredibly grateful for my friends. My two best friends Kayla and Bec have been so important to my recovery. Bec and I have been friends for 21 years, and on our 20^th anniversary of friendship, we got matching sunflower tattoos on our wrists, forever marking the ‘sunflower’ as a symbol of hope for everyone who knows me. My ‘PhD Girl Gang’ – these women inspire me every day. When I first got sick they sent me a beautiful care package (of which they have sent me many) but in this one, there was a beautiful pink blanket – ‘like a big hug from all of us,’ they said, and I take it with me to chemo every time.

So cancer has nothing on me, not anymore – but I wouldn’t be anywhere without all the kick ass women in my life.