When Bladder Cancer Isn't Just Over

By Liz Hiles

2 min read

At the end of this month, February 2021, I am officially 4 years from the end of my treatments. I have not been in active treatment for FOUR YEARS. Sometimes, this is hard to believe but other days, it feels like it was yesterday. I am sure others can relate.

Daily reminders of cancer

Most "Cancer Muggles," as my young adult cancer friends call people who have not been touched by cancer, do not realize that for most cancer survivors, just because treatment has ended does not mean that dealing with cancer has. I believe that to be true for the majority of bladder cancer survivors. In my life, the Cancer Muggles don't realize that I live with constant, daily reminders I had cancer. These reminders are not ever going away. EVER.

Living with a urostomy

I see the scars dappling my abdomen every time I look down. There are the constant reminders that I live with a urostomy with each emptying of my appliance, spontaneous leaks while in public, or when I connect to my Foley bag before going to sleep so I don't wake to my appliance leaking all over my bed.

Neuropathic pain

When I wake up, especially in the cold, winter months, my reminder is sheer pain. Normally, I experience non-stop neuropathy from my potent chemo cocktail. Still, during the winter, the pain intensifies to the point that sometimes just getting out of bed is challenging. The annoying tingling in my feet and ankles turns to shooting pain traveling straight up through my spine when it is cold. My medicine helps alleviate it, but it never truly goes away. I still walk with a cane in public to be sure I can be safe when I am out and about.

Permanent hearing loss

I'm reminded of my bladder cancer every time I answer the phone or log onto a Zoom meeting when I have to increase the volume dramatically so I can hear people. The Cancer Muggles don't realize that I have permanent hearing loss due to my treatments. COVID-19 masking makes that hard because if I go out, I cannot see people's mouths moving when they speak to me, so if I miss something, I may never know it.

Trying to regain my strength after surgery

Four years later, I am still dealing with losing my strength from having my abdomen dissected and putting back together a bit differently. I lost a lot of strength through the process of surgery and chemo. There is nerve damage from the surgery. I have a parastomal hernia and must be careful when I lift heavier things. Now, I am trying yoga to try and strengthen those muscles gently.

Things may never return to how they were pre-cancer

I am so used to being so much more active than I am now. Even when I try, I cannot do things that I used to be able to do. It is frustrating. Sometimes it is discouraging. In my head, I feel like I should be back to the way things used to be. I mean, that's what everyone thinks I should be doing. In reality, I am not and may not ever be.

While I would not ever wish cancer of any type onto anyone, I do wish that the Cancer Muggles would be able to walk a mile in my ultra-supportive, neuropathy-friendly shoes to see what it is like to live the life of a bladder cancer survivor: struggles and all.

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Linda Urbanski Member
Liz - thank you for this article. As others have stated, we tend to need to see disabilities, physical "proof" that someone is struggling and/or in pain. Most people who have not had a disease such as cancer cannot understand the long lasting mental, emotional and physical effects that some of us have long after the surgeries and treatment have ended. Getting back to "normal" is not always possible but we certainly hope to get as close as possible. I am so sorry that you have all of these continued issues and hope that they improve over time. My best to you in your journey. Linda ( moderator, author, Bladder <a href='https://cancer.net' target='_blank' rel='noopener noreferrer ugc'>cancer.net</a> team member.)
Linda Urbanski Member
Congratulations on 4 years without treatments. I am 6 years out and also find it frustrating that I am not in the physical shape I would like to be. I also have a parastomal hernia. A suggestion that I found very helpful was joining an activity center such as the Y that has a heated therapy pool. I go there at least 2 times a week when it is open to adults and also attend some of the pool classes such as stretching in the therapy pool. It is amazing how much better i feel after spending an hour or so in the heated pool. I have also met several people there so the time passes quickly. I wish you the best in your journey. Linda ( moderator, <a href='https://bladdercancer.net' target='_blank'>Bladdercancer.net</a> team member)
1. Linda Urbanski Member
 Liz - I actually have found that some of the assisted living facilities around town offer time in their heated pools to people who do not live at the facility. There may be a nominal charge - not sure - but there may be some in your area. Just a thought.
Raynoland Member
Hey, Liz: i found your story very interesting an informative. My Partner of 30+yrs. Is scheduled for bladder removal early May...currently doin Chemo prior to. (He is 77 I am 80). We went thru@ all the treatments for the past couple yrs. Now with Suregons urging the removal. Anyway I read about the heated pools, an I actually bought one last year. Its a small Spa I've been using it but he refuses to use it. I'M 6' tall 185lbs an barely fit when laying back, but i use it for limited movement (thepary) jets massage my bad knee an siatica (left side), have nuthropy in feet too. It was well worth the invesrment. Its a Softside Tub. Just wanted to share with you, bless you!