Bladder Cancer

Hi! I have a trip coming up, and the day after I get back I start my 2nd year of maintenance BCG immunotherapy. I have intermediate grade non muscle bladder cancer since 2023. I'm feeling better each time, but a few weeks before therapy I get stopped in my tracks. I get depressed and feel like I'm out of the human group again, like I have cancer all over again. Thing is each scope I get, the odds are high i will get high risk bladder cancer, and lose my bladder and prostate, walk around with a bag the rest of my life maybe. Thanks for being here everyone. U give me strength to get thru the low points. Still moving forward!

#bladdercancer #nmibc
Youtube

[photo from September 2020]

IT IS AYA (Adolescent and Young Adult) CANCER AWARENESS WEEK. I'll be sharing throughout the week, but here are just a few of my thoughts that I want to share.

The Hippocratic Oath states "Do no harm."

However, story after story in the AYA Cancer Community proves that physicians are indeed doing harm. They are doing harm by not listening to their patients when they clearly state their symptoms. They are doing harm by giving up when the usual tests show no results. They are doing harm when they refuse to refer to specialists even when requested. They are doing harm by not taking the time to figure out what is wrong and working WITH their patients to FIND solutions!

Physicians are indeed doing harm when they ignore young adults and when they believe the outdated data and stereotypes of "you're too young for cancer," among others. No one is too young for cancer. Cancer does not discriminate. People do.

As a young adult bladder cancer survivor, I fought for more than 2 years to get my diagnosis. I did not present typically - go figure - women have different anatomy so who would think they would present differently than men with stereotypical cancer that affects old, chainsmoking white men. I shouldn't have had to fight. I shouldn't have needed to BEG for answers.

If a man complained about urinating blood clots, all the alarms would have been sounded. The doctor wouldn't have asked "Are you sure it's not your menstrual cycle?" as if you don't already know that those things come out of two completely different orifices!

Physicians are also doing harm in our survivorship phase. They do harm by not connecting us to survivorship programs and centers. They do harm by not devising a comprehensive survivorship plan and continuing to support us in our survivorship. They are doing harm by not believing, researching, and helping to find solutions to the permanent side effects that many of us face for the remainder of our lives.

Cancer myth #6474 is that when treatment is over, so is cancer. The ongoing struggles we face are mental, emotional, physical, financial, and societal. They are neverending and we are often scooted out the door as we ring the bell - if we even get to ring a bell.

Life does not go back to normal - we create a new normal with whatever we have left after cancer. There is no going back to who we were before.

By Editorial Team

3 min read

Last updated: June 2020

The Editorial Team at bladdercancer.net is highlighting people in the bladder cancer community. We talked to Liz who shares how she was diagnosed with bladder cancer.

Liz looks at the camera

Liz's bladder cancer story

At around age 38, I gradually began experiencing urinary issues – urgency, increased frequency, nocturnal accidents and bladder spasms.

I presented to a local emergency room several times as I was without insurance at the time and I did not have an established PCP to go to. I was brushed off with very little testing as “Oh, you just have a UTI or bladder infection. Here’s some meds. Come back if it doesn’t go away.”

Read the rest at bladdercancer.net/living/misdiagnosis-emergency-room

#BladderCancer #Misdiagnosis #healthcarefail #healthunion #bladdercancerdotnet

Having a hard day today.
I listened to the lie in my head all weekend that resting would help. Sleeping would help. While resting & sleeping help to some degree, literally staying in bed for the majority of 48 hours is not something that helps. I work full-time and tell myself that I can have one day of the weekend to recover... It's just the past two weekends I've spent the majority of the weekend in my room sleeping for the most part. Of course that over abundance of sleeping left me taking Tylenol PM last night at 11:00 pm so that I wouldn't be staring at the ceiling in the wee hours of the night. It put me to sleep all right... But I woke up feeling like a zombie this morning.
I dragged myself out of bed because my husband's ostomy bag needed to be changed. He survived bladder cancer over the past year and a half. Ended up having to replace the ostomy bag twice (the first time it leaked between the barrier ring and his stoma).
I've made it to work at this point. Albeit an hour and 6 minutes late, but I made it. The old me would have stayed home and stayed in bed all day. Thinking eventually my mood swing would switch to the positive side. I'm proud of myself for going to work. I feel there are a lot of extenuating circumstances that are hitting me left and right lately. Will my husband's bladder cancer come back? He had his one year CT scan this morning. My mother in law passed away less than one month ago and while we weren't close, it's still the only Mom my husband ever had. We will be traveling later this month to her funeral. I have type 2 diabetes that I put on the back burner while my husband went through chemotherapy & cancer appointments. I'm just starting to get my Type 2 diabetes back on track. I have a check in with my endocrinologist this Wednesday. Oh... And then there's the never ending Generalized Anxiety Disorder that rears its ugly head time and time again. It's a definite combo of Anxiety and Depression. One that I manage successfully most of the time. I just need to go back to putting some structure into my weekends so that I don't succumb to "resting" all weekend. Well... Since I am at work (at the County Attorney's Office) I suppose I should get moving on being productive today. Thank you for reading. If you read all of this, can you leave me a short comment? It will help me feel like I'm not just venting to the Ethernet. Thank you in advance! 💞 #Anxiety #DepressionNaps #Depression #BladderCancer #cancersurvivor