Bladder Cancer

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Need some love for my family

I could really use prayers, good vibes, etc for my family. I have an uncle and cousin with prostate cancer, an aunt recovering from bladder cancer while her husband is in the beginning stages of dimensia, another aunt with heart problems and her oldest daughter has breast and multiple locations of bone cancer and possibly liver and gall bladder too. This cousin has 2 kids, one just graduated HS and the other is, i think. A senior. Not to mention several people in the family with autoimmune diseases as well. Every bit of love given would be greatly appreciated. #Cancers

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AYA Cancer Awareness Week

[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Physicians are indeed doing harm when they ignore young adults and when they believe the outdated data and stereotypes of "you're too young for cancer," among others.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.

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Liz's Bladder Cancer Story: Misdiagnosed at the Emergency Room

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

Misdiagnosed With UTIs Before Bladder Cancer

Liz experiences urgency and blood clots in urine. She is misdiagnosed with UTIs at the Emergency Room. She later learns it was bladder cancer.
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There's a crap ton of stuff going on in my life at the moment. My husband has been diagnosed with aggressive bladder cancer and will have his kidney and uriter removed at the end of March, along with the lymph nodes involved if they can reach them, then chemo. He drives long haul trucks and is our source of income, other than my SSDI, and he'll be off for at least 6 wks. To make matters worse, he's been home for a week R/T appointments surrounding this. My health problems alone are enough to make my life a crap fest. Now I'm having even more trouble with pain, insomnia, in ability to eat good food, and to top it off I fell for the first time in a year this morning.🙄 I'm also in need of getting what's left of my teeth out and fitted for dentures (because insurance companies haven't realized that implants last a lot longer there for are less costly in the long term)🙄 I also had to miss my Botox appointment at the beginning of the month and couldn't get in again until the 30th, so I'm having headaches on top of the fibro/arthritis flare I'm in the mitz of. I do get all kinds of kitty purrs and snuggles, especially in the loo🤣 Our smallest cat, Rosie, believes I should never be alone in there. She'll also sleep with me at night, except she's not allowed to when my husband is home. Thanks for listening.🐧#nausea #ChronicMigraineSyndrome #ChronicDepression #ChronicPain #SensoryProcessingDisorder #ChronicTinnitus #PTSD

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#Anxiety / #Depression / #DiabetesType2 Diabetes / Wife of Cancer survivor #

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

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No motivation. Having a hard time getting out of bed the last two days. #Depression #GeneralizedAnxietyDisorder #Anxiety

I feel so overwhelmed. I have a full time job but I haven't gone in the last two days. I'm depressed. See I've been through a lot lately. My husband was diagnosed with stage 2 Bladder Cancer last year. 2021 was basically all about getting my husband through chemotherapy, bladder removal surgery, and then helping him get over two post surgery infections.
He's just (within the last month) has been able to go back to work. I tried to work as much as possible through this. I worked everyday in January.
With all the world news happening I seem to have taken a turn for the worse mentally. I know taking two days away from the office isn't the worst thing in the world. Just feeling low. Checking in with others may help to lift my spirits.

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HYPOCHONDRIA/SOMOTIZATION

I developed an inguinal hernia right as i entered puberty. I thought it was a tumor and didn't want to "inconvenience" my family with my death....I taught myself to die.

Fast forward a few decades, and the delusions continue. Every ache and pain evolves mentally into a terminal condition. I watched my wife die 5 years ago from cancer (I was 27) and have fought bladder cancer in myself in the mean-time.

If it wasn't for my hypochondria/somatization disorder, it would've been too late when they would have found mine. leaving my child an orphan. listen to your body, even if its making mountains out of mole-hills.

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My anxiety is off the charts tonight... Got home approximately 12 hours after leaving the house for work. Worked a full day of customer service calls for the county courthouse I work at, ran a couple errands after work, stopped at a drive thru to get some dinner for myself and finally made it home to my husband whose fighting stage 2 bladder cancer. I opened the passenger side door to unload my things and what do I see.... A mouse!!!!! I've never experienced anything like this before! Of course the stupid thing crawled under the passenger seat of my car. I'm beside myself. I let my husband know. He is the best husband in the world. Even though he's exhausted, he's gone to the hardware store to get some glue boards or live traps so that we can bait this mouse out of my car!! So insane. #Anxiety #GeneralizedAnxietyDisorder #Cancer #Relationships

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CURING HUMANITY

I’m a 19-year-old college advocate hoping to reach the FDA to promote the accelerate of cures/vaccines for incurable diseases. Please help by signing the petition and promoting it to your social media if you agree with my petition. We can start by passing the Promising Pathway Act Bill.

For more information read my petition…

www.change.org/p/janet-woodcock-m-d-accelerate-the-developme...

iamals.org/action/promising-pathway-act

** TAKES LESS THAN 3 MINS COMBINED TO COMPLETE **

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Struggling today #MentalHealth , #Anxiety #GeneralizedAnxietyDisorder #BladderCancer

Having a hard day today. My husband was diagnosed with stage 2 bladder cancer as of April 5th. He had a large tumor removed back in April. And started chemotherapy this past Friday. He had some complications, but went back to work today. I struggle with depression & anxiety. Watching him go through this has been extremely difficult. I'm struggling with my own demons and kicking myself for not being strong for him. He says I'm doing fine, that he feels he can turn to me for anything... But the lies in my head are easier to believe. I work full-time (customer service, answering phone calls for a local courthouse) in a small call center. Couldn't see myself handling customer service calls today (especially if they got even a bit difficult). Tomorrow my husband has surgery to put in a port for his continuation of chemotherapy. I need to find a local support group, find some more outlets. It doesn't help that I live in Arizona and we've had breaking record heat for the last week. All I want to do is stay inside... But I need to find a balance somehow. I have counseling tomorrow evening. Thank you for reading... Any encouragement is appreciated

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