Two Years Post-Cystectomy: 5 Things I Wish I Had Known

Well, it's coming to that time of year again for me...the annual checkup!

This will be my second checkup since I had my bladder removed in 2017. As the time gets nearer, it always gets me thinking about my cancer again and all its associated worries. But moreover, I start to question "what could have been done better?" and "what do I wish I had known?" So, these are my five responses to "what do I wish I had known?" two years later.

Life would change, but for the better

Well firstly, I wish I had known that I would be very much alive and, in fact, enjoying a great quality of life, a kind of life I could never before have dreamed of prior to being diagnosed with cancer. You see, my life has changed so much, but on the whole, it's so much better now. I have changed my career direction. I no longer have that senior manager role in a very fast-paced business environment with around 60 staff, plus clients and managers to deal with. I now write and advocate for bladder cancer patients all over the world! Who would have thought it? Me, a writer, a speaker, a voice for people with bladder cancer, a Director for the charity "Crush it For Curtis Foundation", and a fund raiser!

I can trust my stoma to allow me to do almost anything

Secondly, I never imagined that I would ever in a million years be able to forget that I have "a bag" attached to my abdomen. But, I can honestly tell you, you do eventually forget. Although, I have also learned to my peril NEVER to become complacent about your stoma as, at some point when you least expect, it may decide to come unstuck.

I decided, for some unknown reason, that my stoma is a "she" and named her Winnie, you may laugh. But naming my stoma made it more personable to me and less frightening to family and friends. I often get asked, "how's Winnie?" which is always followed by either a smile or a chuckle, immediately breaking down any barriers. Plus, on the odd occasion that "Winnie" has had an outburst (leakage from my bag), I can absolve myself of all responsibility. I blame it solely on that very naughty Winnie! So, I can say now that I am used to "Winnie", that I never take her for granted, but that I am confident enough to undertake any activity I wish, knowing that "Winnie" won't stop me. Swimming, in particular, I was afraid of, but I can honestly say my bag stuck well and didn't let me down.

I wish I had been given information on how the removal of other organs would affect me

This was the thing that I was totally unprepared for. I was given no indication of how long it takes just to heal. I had my cervix removed as well as my bladder and the anterior wall of my vagina. What was the anterior wall? I never asked; I was too concerned about getting rid of the cancer. So, I was never informed. The removal of the cervix was probably the most painful after the operation, and it lasted for some time. Was this normal? Again, never asked, so wasn't informed. Two years on and things have much improved, but I wasn't aware that by removing the anterior wall of the vagina this would, in turn, cause the vagina to be shortened by so much. The removal of other organs and their associated effects on your personal life is something I wish that I'd been given some guidance on.

I can still wear nice clothes

This, as a woman, was one of my biggest worries when learning I would have a bag attached to me FOREVER. Would I ever be able to wear nice clothes again? In fact, I was so besotted with the idea that I wouldn't possibly able to wear anything that was the remotest bit "clingy or fitted", that I gave all my fitted and clingy clothes away before I had my surgery. I wept as I did this, but thought it was better to get rid of them before surgery, as it would probably bother me even more afterward. Two years later and I've come to learn that I can still pretty much wear what I want, skinny jeans included! I wish I had known that; I'd have kept all my clothes!

Pretty much any type of travel is still possible with a stoma

And lastly, I worried that I wouldn't be able to travel, especially on long haul flights. After all, how would my stoma behave on such a trip? Well, two years since the birth of my "Winnie," I can tell you I have done all of the following with no problems at all:

Short and long haul flights, overnight sleeper buses throughout Southeast Asia, a two-hour cable car dining experience above Singapore, oxen and cart rides in Sri Lanka, taxis, boats, trains. And, my proudest of experiences with my Winnie was taking part in a two week, 2800 mile self-drive Auto Rickshaw Rally from the North to the South of India in just 12 days!!!

What's your craziest adventure with your stoma? I would love to hear!