The journey to my diagnosis with advanced stage bowel cancer was an unusual one. Six months prior to my diagnosis, our world had fallen apart. Our son Sam, who was 13 at the time, was diagnosed with advanced stage nasopharyngeal carcinoma. This type of cancer is very rare in the west for adults, let alone children. It grows in the nasopharynx, a cavity behind your nose and throat.
Sam was rushed to London to be treated by an amazing doctor at the University College London Hospitals (UCLH). He explained to us Sam’s condition and treatment plan.
When you hear the word “inoperable,” it swarms and scrambles around in your head.
“Well of course it’s inoperable,” your rational mind chimes in. It’s not like they can lift his face off, remove the tumour, and put him back together again, is it?
Thankfully inoperable doesn’t mean untreatable.
Chemotherapy came first, then radiation, then immunotherapy. His journey was long and hard, but he battled his way back to life stoically and fiercely, and without melodrama or hysterics.
This brings us to the day I was diagnosed, six months after Sam. He was only halfway through his treatment when I had an unrelated, completely different cancer. I too was in the advanced stage due to late diagnosis.
The words “bowel cancer” hit me in the face like a shovel, even though it didn’t really come out of the blue. In hindsight, I had been symptomatic of bowel cancer for a long time, but I had been assured by many doctors that it was just Irritable Bowel Syndrome (IBS). Because I’d been feeling so ill for so long, I was afraid that I didn’t stand a chance of surviving.
The day the consultant explained what was wrong with me and what I needed to have done to survive will remain with me forever. He said I would need chemo and radiation, which I had expected, but he then went on to tell me that I would need an AP resection resulting in a permanent colostomy. This is an operation in which a piece of the colon is diverted to an artificial opening in the abdominal wall to bypass a damaged part of the colon. I was dumbstruck with shock, and horrified to the point of wanting to vomit then and there. I absolutely thought I’d never leave home or see my friends in the flesh again. At that moment, I wanted to hide away forever.
My husband Chris, my son Sam, and my youngest son Ben were with me all the way – supporting me, loving me and giving me hope. They were there rallying me to keep my spirits up. Besides, Sam had been so calm and serene through his own treatment that I could hardly run around screaming like a banshee, no matter how much I wanted to.
I got into a routine once I started the chemo and radiation, and although I felt rough with tiredness and nausea, the pain I was suffering subsided as the tumour shrunk. I could feel myself getting better at the same time I was feeling worse because of the side effects of the treatments. It was a curious position to be in.
Once the chemo and radiation ended, I had a four-week wait until my operation. During this time, I worried and fretted about what life was going to be like after the surgery.
Let’s fast forward to when I woke up after the operation. I looked down at the clear colostomy bag that the surgeon had attached to me. When I saw my stoma (a hole in the stomach used to divert fecal matter from the intestines), I felt a sudden surge of emotion, of affection, if you will, for this little pink blob that was going to enable me to live a long and happy life. It was absolutely opposite to the reaction I had expected.
I enjoy my life to a degree I couldn’t possibly have foreseen before my diagnosis. Not only do I see my friends on a regular basis, I have never travelled so much in my life as I have post-surgery. In the most basic of terms, have bag will travel.
Life is for living. I celebrate getting a second chance every day, and feel incredibly lucky, as I’ve never had a low point connected to my predicament. My recovery wasn’t a guarantee, nor was Sam’s. But here we are, seven years on. We are both fortunate and grateful to be alive.
I started writing my blog because I have found ways of dealing with having a colostomy bag, and I thought that my experiences might help others bypass the trial and error process that I went through to get to this point.
However, I wouldn’t be so presumptuous to say how anyone would or should feel if given a similar diagnosis. Of course I can’t. All I can do in my blog is show that my life is as good now as it was before my treatment and surgery. Maybe even better!
Before my diagnosis, I was very ill for many years with what I was led to believe was IBS. My world had become very small and enclosed because I just wasn’t comfortable if I was too far from a toilet, or I’d be constantly worried that a mishap would occur. Nowadays I don’t have that worry. It’s made life easier in many respects. Of course it would have been better if my bowel cancer had been detected and diagnosed earlier, but it is what it is. And I’m happy as I am.
I’m laying out my story before you to help you see yourself in a new, positive light.
Stomas are life-changing, but the change doesn’t have to make things worse. My life is far better now, and I’m more confident about my body now than I was before. I see my body not simply for its aesthetics, but for its ability to heal. That is a very empowering feeling to have.
More than anything else, I’m happy to still be here with my beautiful boys and my husband. It’s a privilege to not just be living life, but to be loving life too.
To read more about me and my journey, visit my blog: http://www.gladragsandbags.org/