Oh no! Im so sorry you’re both going through this. Thinking good thoughts for you.
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I am SO sorry to see this! I will add you guys to my prayers. Does U of W have a therapist/counselor for patients? If not, would you be able to get in with someone? A friend’s son has been through extensive treatments for, and is currently in remission from, gioblastoma, and the Duke therapy program was fantastic for their whole family in helping them deal from this.
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I don’t even want to think about how lost you feel, @TWH_Girl! And I’m so sorry you are going through it. I don’t have advice (sounds like that’s under control anyhow) but just offering more support. We are here any time you need a hand to hold. COTH arms can reach a long way and make a great safety net when linked together. Sending prayers and love from the east coast!
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Big hugs and support to you both 
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Jingling for you both!
Rebecca
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My sister is supporting her husband who has been living with stage 4 kidney cancer for over 10 years. One of the places it spread to was the bladder. I am glad you are in close proximity to UW Madison. She has been carrying a load for a long time. Over the years, she has learned to accept help from friends/family. Use your forums for support. I am her researcher - new diagnoses, new medications, new side effects, etc. Your fear/struggle is so normal. Sending many jingles for successful treatment and many more happy years together.
Most people don’t mean to say the wrong thing… they just don’t think about how it sounds.
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Both of these! I think sometimes people are so surprised and have no idea what to say that they just spit something out they think might sound positive. No one knows what it feels like from your perspective until it happens to them so they can’t have any reference point.
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Do you know if he needs his bladder removed/radical cysectomy? There’s a lot to learn and take in on that aside from the entire cancer diagnosis itself. At first hubby wanted the neobladder but is now thinking he will do illeal conduit (ostomy bag) instead due to less complications and incontinence issues.
Ugh, we should be planning our 20th anniversary trip not which urinary division method to pick. It makes me sad.
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@TWH_Girl, I’m so sorry you’re starting this journey. My husband’s cancer journey started in 2020 (colorectal) and we’ve been through 3 surgeries, 2 rounds of chemo, 2 rounds of radiation, and his first ablation should be later this month.
I was 30 at the time (he was 36) and it was very difficult to process.
All treatment has been at the UW Carbone Cancer Center and we have been very happy with his treatment and all his doctors. His nurse navigator is invaluable. We live a bit closer to the UW hospital than you.
I’ve learned a lot in the last four years about chemo/radiation support and general life with cancer (as well as navigating the UW hospital). I strongly recommend looking into a product called Enterade which was a godsend for my husband and I have a few friends who have been using it since I recommended it and also say it helps a lot with symptoms.
Most importantly, it’s possible to be ok. Even with YET ANOTHER tumor lurking in my DH’s liver right now, he works in his garden for 2-4 hours a day. We make plans to travel. Sometimes those plans have to change, sometimes we have a great trip. We eat very healthfully but I’ve learned to not spoil his joy by throwing a fit when he wants ice cream. We communicate much better than we ever did before. We are more honest with ourselves and each other about what we value and what we don’t.
Please, PM me if I can help. I would be honored to be a resource as you go through this.
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I’ll also offer that I thought the ostomy bag would be a worse experience for everyone involved than it ended up being (my DH only had his ileostomy bag for ~4 months). It’s amazing what you can get used to.
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That is very true. I never thought I’d be living the rest of my life with a tube going into my peritoneal cavity. But that’s the reality, and the further reality is that it’s much easier to deal with than lots of other medical devices. You learn to deal with what life hands you! It’s so hard for the OP because of the very real fear of the outcome, and all the unknowns they are going to have to face together. Once you get into a rhythm on treatment, at least some of the uncertainty is resolved.
Rebecca
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Very much so, Rebecca.
Today’s PET scan was good without evidence of spread. Our first bit of good news so far along the way.
Next up: oncology on 5/30. But in the meantime we are taking a small trip to Door County for the weekend to breathe a sigh of temporary relief and gratitude.
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Yes they do, JB. They also have an ostomy support group for when that time comes post op. I thought about being a nurse for a hot minute in college…guess I should get some scrubs and get ready because I will be getting some good practice doing my at home clinical.
In all seriousness, it is an honor and a privilege to care for a loved one and show my husband the care he has given me.
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Trying to keep life as normal and pleasant as possible helps a lot when you’re facing something like this. I hope your trip is pleasant.
Rebecca
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I am so sorry you are going through this. I will keep you, your husband and family in my prayers.
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@TWH_Girl, I felt that way caring for my DH…it was a privilege and an honor to have him love me…and a privilege to care for him. You clearly love and adore him. I’m glad you got good news regarding spread. I, too, am available for pm support. I’ll share my phone number if you ever need to talk.
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I love that attitude 
It really is a privilege, even when it’s hard AF. My thoughts are with both of you! One day at a time. Knowledge is power. All those cliches do have some power behind them. Hugs to you both!
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Major jingles for both of you.
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I am so sorry you and your husband are going through this. I’m glad you have each other.
My 90 year old father-in-law had bladder cancer back in the late 90s. He was treated at the Mayo in Rochester and along with chemo had his bladder removed. He opted for an artificial bladder and still has it. The downside is he has to catheterize every so many hours and that includes setting his alarm to get up in the middle of the night, and he gets occasional UTIs.
OTOH, he’s now 90 and still kicking! He’s staying with us right now. 
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My SIL was dx with bladder cancer, oh gosh I think 20 years ago, now. She was a stage 1+, almost 2 so the therapy was chemo followed by radical surgery ,full hysterectomy with bladder removal and stoma. She recovered well and returned to work. After time, however she elected to retire as a teacher just shy of 65 yo… she continues to thrive and does All the things , including swimming
Best thing they did was set up a web page where reports and news could be shared. This depressurized need for communication to many people as well as making sure everyone had correct news during the journey.
The national bladder cancer network is strong and you will find a lot of support and knowledge
I was pleased when my former employer received approval for their bladder cancer drug. During my time with them I was able to spend time in early research and support the final phase before approval which came shortly after I retired
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