After colonoscopy (repeated twice), CT, MRI, and X-rays - it was confirmed as cancer and a ULAR with Proctocolectomy and Ostomy needed to happen sooner rather than later.
The testing stages was daunting, but, I had to remember the end goal that this (stoma) would give me life again. It wasn’t a death sentence; it was a life sentence - one I would get to live!
I was scheduled for surgery four weeks later to allow me to see my son graduate primary school, one last week with my work colleagues in prep for the unknown year ahead, and to just finish Xmas so that when I got home (on what I knew would be Xmas eve) everything would just be ready to go. I needed to prep everything, to prep myself for what was about to change.
It was during this time I researched, researched my heart out! What would it look like, what does it feel like, what changes do I need to make to my diet, my life, how will this impact me? The best thing I found - was Facebook support groups! They are a WEALTH of lived experience for someone new to the diagnosis and unsure of what’s next. I was a lucky one as my cancer was a surgical one only. I was the smaller dream statistic, in an already small one. I have no secondaries thus far and follow up scopes showed that the polyps left initially had resolved themselves.
Coming up to 12 months on .... things are still rocky. My recovery from the Proctocolectomy was long. I had my procedure mid- Australian summer and this was not the friend of a wound! But with vacuum negative pressure dressings, and the amazing Stoma Nurses at the hospital and Acute Outpatient Care clinics, they helped me along the way and wiped tears when the measurements felt like they weren’t going anywhere. All of this ... amidst the cloud that is COVID-19 also.
I never anticipated the awareness of self that this would bring me. I realised that in gaining my ostomy bag, I gained even more. A new community to talk to, and a deep connection with myself and those close to me. I didn’t anticipate the negativity that can come from what has been deemed an ''invisible illness'' and for the few nasty looks I get when exiting a disabled toilet, but, with time a tough skin has formed and the looks mean nothing now.
I was ever so fortunate that in my diagnosis, I found that a colleague at work had a Stage 1 diagnosis some time ago, and was given a temporary colostomy that has now been reversed. Their lent ear was a godsend in the initial stage of the unknown. I wish I had known, however, that I have to have a loud voice, especially post-surgery. Several issues were identified post-discharge.
In my six-week post op call with the Nurse Manager I made these aware and they have since rectified the situation. I also wasn’t aware of how many people I should have seen post-surgery that I didn’t, but again, it was Xmas and people’s minds were elsewhere.
My advice to anyone that has a family history or just feels that something isn’t right ... get it checked! The earlier the diagnosis the better the outcome. Do not allow the free bowel screening age to stop you, because if I hadn’t of persisted, I would not have seen 40 let alone 50!
I also recommended linking with a Cancer Counsellor. They can help so much with the processing of information and with the millions of questions running through your head. And a positive mind, leads to a better recovery.