The Benefits of Joining Online Support Groups & Communities
When I was diagnosed with bladder cancer back in September of 2016, it was the last thing I expected. I was completely shocked and totally unprepared. I knew nothing at all about bladder cancer. I felt completely in the “dark”.
Feeling alone with my diagnosis
No one I knew had ever had bladder cancer, or in fact, knew anyone else that had.
I had that feeling of isolation, that feeling of being “different”. How would having bladder cancer affect me? What treatment would I need? Where would I be treated? What would my life be like as a person with bladder cancer? Is it going to be painful? So, so many questions.
Wanting “real” advice and support from “real” people
Of course, we have access to “Dr. Google”, with all his statistics, reports, reviews, medical reports, etc. But I wanted advice, support from a person, someone who had knowledge of, or even “better” if that’s the right word, someone who had experienced bladder cancer for themselves. Someone who would truly understand my fears, my anger, my guilt. Someone that I could relate to, and they to me.
Family and friends were there to love and support me, but none had the information or experience that I yearned for.
My surgeon's explanation
My surgeon gave me a brief explanation of what a "Radical Cystectomy” entailed. It all seemed very complicated, all very “medical”. His job was to “rid” me of my cancer. No information was given to me regarding what my life might be like with a “stoma”. No practical or emotional help was given or even offered. I suppose, at that point, I was unaware that practical and emotional support and advice are as equally important and necessary as all the “medical stuff”.
It was when I returned home that the enormity of what was about to happen to me set in. It was then that I realized I had so many unanswered questions. Questions that may seem “trivial” to ask my surgeon. Questions like, what will I be able to wear? Will others be able to notice that I have a “bag?”. Then there were the scary questions like, “will I be in much pain?” “Will my life ever return to normal, or will I always be consumed by my attached bag?”
Finding the right online community
It was that day that I started searching the good old World Wide Web for answers. It was that day that I “fell upon” support groups and online communities.
There are numerous support groups specific to “bladder cancer” and/or “urostomies” that are available. I signed up for half a dozen or so and began to engage.
I quickly started to find out which sites I felt more comfortable with. The sites that I personally found best suited me.
So what benefits did I get from online support groups?
- I found people who had/have the same condition as me. People I could relate to, and them to me
- I could ask any question or concern that I had, without fear of appearing “silly”
- I could share my worries and anxiety without burdening my family
- I could communicate with someone at any time of day or night
- I could see how others were living a “great” life with a stoma. It gave me the inspiration to read their stories
- And probably most importantly, no matter what stage I was at in my journey with bladder cancer, there was always someone there to support me. Someone who had already “been through it”. Someone who understood
My heartfelt thanks
I cannot thank “those” people enough who have supported me on my journey with “bladder cancer”. Some have since become friends. Others remain a name in an online community. But all helped me get through this awful, scary, sometimes terrifying journey known to us all as “bladder cancer”.
Have your views towards bladder removal changed since you were diagnosed?