I am not a bowel cancer patient. I am however, a wife and carer of a bowel cancer patient, my husband Dean.
My story runs parallel with his but takes in its own twists and turns of what life as a carer can be for someone with cancer.
My husband Dean was diagnosed with Stage 4, metastatic colorectal cancer at the age of 35 in May 2019. In a whirlwind 6 months we went from moving back home to Melbourne after living in Dubai for 6 years, renovating our house, getting a new job and continuing to renovate.
Then within 3 blurry days I was dropping him off for a colonoscopy, then being dragged into an office post procedure and told things look very suspect, driving him to get urgent MRI and CT scans, managing distressed relatives, trying to re-schedule work commitments, calling his GP to beg for sleeping tablets for him and then finally sitting in the office of a colorectal surgeon hearing the words “large rectal tumour” “spread to the liver” “something on your lung” “it’s stage 4”.
My immediate response was simple, short and summed up my complete lack of knowledge of anything cancer related.
“How many stages are there and is 4 a bad one?”
To say I knew nothing is the world’s biggest understatement. Overnight I went from being a part-time music teacher who performed improv comedy on the side and just finished a successful show at the Melbourne Comedy Festival, to being a full time Carer. I was filling in insurance papers, scheduling appointments, researching dietitians, looking up holistic GPs, organizing referrals, driving to appointments, booking more appointments, taking phone calls, the list goes on.
I felt completely unprepared for the job at hand. If I was to ever rank professions that I would like to have, nursing would be the last on that list. Yet here we were, in a situation none of us ever thought or wanted to be in with no other choice but to get on with it and do what was required.
Dean was 35. A non-smoker, non-drinker, vegetarian who practiced yoga 6 days a week and enjoyed rock climbing. Slim, healthy, active. He fit none of the characteristics of what we thought someone with bowel cancer would. Yet as we started along the path of this long journey, we quickly discovered he actually did. We were coming across on social media more and more young people, fit and healthy young people, also with bowel cancer. And some of them, had carers just like me. Partners who were thrust into a life that was so completely foreign and almost unmanageable. So we would chat, compare stories, get advice and check in on each other. This fast became a network of people who all understood what was going on and how completely unfair life had become.
Thanks to our ‘cancer friends’ all the new things became slightly easier to manage. The names of the mutations and chemo drugs. Side effects and how to manage them. Radiation and how that will look. Tips on up coming trials. Advice on second opinions and even tips on where to get the best coffee near certain hospitals.
What became the hardest thing for me as his Carer was everyday life. Nothing in my working life aligned with Dean’s cancer regime. I was working 3 days a week at a primary school and 2 nights teaching improv. I was sometimes seeing close to 120 different students a day. Germs became a huge issue. I was paranoid about catching a cold or gastro from my students - normal occurrences for primary school teachers. I would rearrange my timetables and lessons to fit in with appointments, only for those appointments to be changed last minute, run hours over time, or be arranged so last minute that I had no option but to take the day off without pay. After juggling this system for 12 months, the first Covid lockdown occurred. And that’s when I knew going back into the classroom wasn’t going to be for me. We couldn’t rely on anyone else to help with running him around anymore because we had no idea who could be infected with Covid and trace their movements. Dean’s treatments weren’t working, tumours were growing, and more interventions were needed. So we decided that the best thing for us was for me to become his full time Carer.
There was one factor alone that allowed us to take this path and it’s something I encourage anyone to research and explore. Dean and I had a Critical Illness/ Life insurance policy. And, due to the nature of his metastatic disease, the policy paid out without hesitation. The ironic thing is that Dean was insured for more than me because he was deemed healthier at the time of assessment 2 years prior. Sure it was just a tick a box application, but the irony isn’t lost on us.
Also, at the time of diagnosis, we were in the middle of getting private health insurance after only just getting back onto Medicare after living overseas for so long. Our private health insurance kicked in 1 week after diagnosis. This meant anything cancer related, had a 12-month waiting period. I made the decision to continue with the policy. My thoughts were that if we were still in this situation in 12 months time, we may need more options and going private would provide that. We were exactly right. Almost 12 months to the day of our policy’s waiting period expiring, Dean was booked in to see a private oncologist and all his treatment was transferred out of the public system and into the private. The difference this made to his overall well-being was enormous. A complex stage 4 diagnosis needed a complex team to help manage it. Time, which was always an issue in the overrun public system, was of the essence. I often thank past Jess / Dean for sticking it out with the insurance premiums for 12 months to get the care he has now.
Our journey has been close to 3 years. It’s included
- over 50 rounds of chemo (various combinations)
- 30 sessions of radiation
- Microwave liver ablation
- A failed immunotherapy trial
- A permanent ileostomy procedure
- 4 trips to Emergency
- More PET, CT, MRI scans than I can count
- Dietitians/ psychologists/ financial planners/ exercise physiologists/ hypnotherapists/ Pilates classes/ acupuncture/ physiotherapy/ vitamin infusions/ palliative care pain management
- And a lot of second rate and over priced coffee from hospital cafes.
Our journey isn’t over and we will continue to navigate our way through it, together. And while the hardest job lies with the brave and strong patients, I want to give a shout out to all those carers out there who cry in secret, have little anxiety attacks in the middle of the night and even sometimes think “I can’t do this anymore.”
You are not alone and you are amazing people and you are seen.