Back in August 2018 my GP noticed that my iron levels had dropped from over 100 to around 25. We discussed this and after ruling out other potential causes she gave me 2 stool sample pots to complete over two consecutive days.
Whilst I couldn’t see any visible sign of blood in my stools she thought it would be worthwhile to investigate. 25 is still in the normal range for iron levels and I wasn’t concerned.
I went on holiday to Europe for a month, set up as a freelance consultant and started working with new clients and before long the sample pots were forgotten.
At the end of March 2019, I went to Uluru with friends for a long weekend and woke up early on the final morning of the trip with agonising stomach pains. I could see a bulge on the bottom right hand side of my stomach and on medical advice took paracetamol and went to the Dr’s the next day. My GP thought it might be a virus so put me on a simple diet for a week to see if it cleared it.
The pain would come and go over the next 5 weeks and just before I was about to go to Mexico for a month long holiday I went back to my GP who recommended more tests be done before I left. Suggestions were that it could be anything –IBS, a virus, Chrohn’s disease a parasite from my trip to the outback, or something more serious – but I don’t remember bowel cancer being explicitly mentioned.
After an ultrasound on my abdominal organs, blood tests, a Urea stomach test and stool samples I received a phone call the same day from my GP to let me know that the stool samples showed blood present and my iron level had dropped further to 9. She said she was concerned and recommended I seriously reconsider my trip to Mexico and see a Gastroenterologist for an endoscopy and colonoscopy. She wrote me an urgent referral and I had the Endo and Gastro 7 days later.
When I came round from sedation the Gastro doctor advised me it wasn’t good news and that unfortunately she’d found an obstruction in my bowel that she was unable to get the camera past. She’d taken biopsies of the obstruction and sent them for pathology testing. She stood at my bedside and wrote out referrals to a colorectal surgeon to discuss next steps, a CT scan to find out more and an iron transfusion to get my energy levels up, the following week.
Things moved fast… in shock, I was picked up from the hospital and went to stay with friends. The weekend passed distracting myself with friends at a food and wine festival trying to carry on as normal. On Monday I went home thinking I wouldn’t find out more until my meeting with the colorectal surgeon on Wednesday. I was at home alone about midday when my Gastro Dr called to advise that the biopsy reports had come back and confirmed cancer. Within 10 days of the initial tests I’d been diagnosed with cancer.
With family asleep over in the UK and friends at work, I called a friend who took me to various appointments and the next few days passed in a blur as I received the iron transfusion and attended the CT scan, swinging between numb shock and hysterical crying.
On the Wednesday I met with the colorectal surgeon, accompanied by two close friends. He gave me the news from the CT review that it didn’t look like the cancer had spread to other areas outside of the bowel and that whilst the lymph nodes next to the tumour didn’t look enlarged, he wouldn’t know more until after surgery to remove the tumour and surrounding lymph nodes. It looked like it hadn’t spread, so with huge relief we booked in surgery for 3 weeks later.
He also advised that any treatment plan would be aggressive and that chemotherapy was still a strong possibility after surgery to ensure we caught it entirely. Having a plan for next steps and the confidence I felt in my surgeon was an incredible relief. The physical and mental anguish was crushing despite the very short wait I had to get diagnosed and I know I’m lucky for things to have moved as fast as they did.
I had elective surgery booked in for June 2019 and I was placed on a low fibre, simple diet until then. Unfortunately, despite following the diet, a week before my scheduled surgery I was rushed to ER with a partial obstruction of my bowel near the tumour. I had keyhole surgery to remove a 3cm tumour, 15cm of my ascending colon on my right hand side and 33 lymph nodes.
I was in hospital for a week and recovered well with no major complications. Cancer was found in 3 of the lymph nodes and following consultation with my colorectal surgeon, I was advised that I had stage 3b bowel cancer that could have been growing for 5 to 10 years. Six months of chemotherapy treatment on a fortnightly basis was recommended.
I had a port-a-cath fitted in July and started chemotherapy at the beginning of August 2019 after 8 weeks rest and recovery from surgery.
I had keyhole surgery and recovered well. 12 weeks on from surgery, and my diet is pretty much back to normal. I’m 2 rounds into 12 rounds of chemo and so far, I’ve been coping well. The first round I had this horrible feeling of feeling really gross and toxic. I always tried to put good things into my body and look after it and knowing that you have to put highly toxic chemicals into you that will make you feel worse before you hopefully get better made me feel really emotional and sad.
The second round was easier and I’m learning workarounds for various side effects. For example, I get neuropathy in my fingers (the drugs make my hands sensitive to cold for about a week) so I use oven gloves to get things out the fridge! I listen to my body and when I get tired I rest. So far I’ve been sleeping well and my appetite is still good with no nausea.
Mentally, I was overwhelmed by so much information within such a short space of time. High school biology doesn’t prepare you for this and whilst you need to be informed enough to ensure you’re confident in your Doctors and treatment, getting stuck in the Google spiral of doom is something I’ve successfully avoided.
I sought out oncology psychological support from my treatment centre which has been great to help process. I also have a peer support contact who’s been great in guiding me through an unknown experience that can often feel mentally isolating and lonely even though I have such an amazing support network around me physically. I’ve still got a long road to go but I feel I’m off to a good start.
I’m mostly feeling pretty positive now and so grateful I had a GP who looked at my symptoms and not just my age. I’m about to go back to work part time around my treatment and my Oncologist is supportive of me going back to the gym. I won’t know the outcome of the treatment for a long time and have reached a point of acceptance that I’m living with cancer and actually doing a pretty good job of it. I’m confident in my medical team and taking each day as it comes and listening to how my body is feeling. I get dehydrated more easily so I make sure I drink more fluids and rest when I need to.
The advice from my oncology team is that initial tests look like there isn’t a genetic reason or lifestyle indicators contributing to why I got bowel cancer and it is likely to just be “bad luck’. I accept this. So much of our world is explicable and science has found answers to so much but this is a reminder that sometimes things happen beyond our control even if they’re terrifying and make no sense.
There’s no history of bowel cancer or any other cancers in anyone under 70 in our family so this came totally out of the blue. I honestly thought the worst it could be was a parasite. We even named it Dazza after a flakey date that cancelled on a friend of mine as none of us took it seriously at first! Confronting my own mortality and realising I’m not invincible was a bewildering and humbling shock.
The sadness and vulnerability of being human had me in a daze for a while and I read a lot to try to learn how others have made sense of something that makes no sense…how amazing our little bodies are, yet how fragile they are. Confronting this has been painful but overall positive coming to terms with it and moving forwards with positivity.
It’s made me appreciate the day to day a lot more and forced me to slow down… a bit. I’m from the UK originally and my mum and sister flew over to be with me post surgery. My mum staying with me for 3 months has allowed us to reconnect in a lovely way that we wouldn’t have had the opportunity to if this hadn’t happened. I’ve learnt a lot from her patience, wisdom and her calm presence. Or at least I’m trying to tap into some of this from her!
I’ve always tried to surround myself with good, positive, uplifting people from all walks of life and this has really shown how many good people I have in my life who genuinely care about me. The kindness, love and generosity friends have given in time, resources and emotional support has had me crying with gratitude and love on many occasions during this huge time of uncertainty and pain.
Surprisingly there are so many happy and fun memories I have from what should be a pretty rubbish time to be honest. It’s a testament to the family and friends I have that I am physically and mentally in a good space only 3 months into my experience.
A massive positive is I’ve also had about 20 friends get colonoscopies off the back of my diagnosis due to family history or symptoms they’ve had, and all have come back clear so far! Yay! .
I honestly didn’t know anything about bowel cancer before I was diagnosed. I’ve since been told it’s “an old man’s disease” which I now know not to be the case with about 1400 people under 50 diagnosed with bowel cancer in Australia every year. The individual circumstances of each person’s diagnosis also mean everyone has a very different experience of how they are treated.
The few people I now personally know of who have been treated for bowel cancer have all been treated in quite different ways based on our oncology professionals advice for our specific situation and what has been shown to work for our type of cancer. No two experiences are the same.
I don’t think anything can prepare you for a cancer diagnosis. However, I’ve had to reframe my thinking about cancer. 1 in 2 people will get a type of cancer in their lifetime but the dedication of all the medical professionals I’ve had help me so far (over 60 I reckon!), the research being done and the advances being made to treat and cure this disease, and also live well after treatment, are incredible.
There’s still more to be done of course. Living well with cancer is how I’m now approaching this and getting inspiration from others who are also living well with a chronic disease and knowing that whilst mine wasn’t caught early, it is treatable.
Whilst I didn’t have any obvious symptoms at first, having regular bloods done meant my Dr had a baseline to spot a drop in my iron level which was the initial symptom. Get to know your body, don’t be embarrassed to talk about your toilet habits and any changes and see your Dr to put your mind at ease if you suspect anything is wrong. And don’t be afraid to ask questions - this is complex stuff and lots to take in. I’m still finding out things I had no idea about!
I was told early on that looking after your mental approach to cancer is as important as looking after your physical wellbeing. Seeking support from cancer organisations, peer support groups, your GP or other support mechanisms makes you realise how common cancer unfortunately is, but also that you are not alone during this.
And get a good diary… there’s a lot of appointments to keep track of.