Hello from PT1 - Spouse of Bladder Cancer Patient

@PT1 Hello and welcome from BC! So glad you reached out to us. I am sorry to hear of your husband's diagnosis….it is so difficult, for the whole family…please know you have found a community that cares….that will listen and share and support one another.

I will include a link below….have a look; you can read/see others' experiences, similar to your husbands…and reach out, it you wish to.

I checked the site, and found 2 members, similar path-

Please meet: @Clarke @Cooper2019 Thank you both so much, if you could share your experiences, here, to support our new member, who is giving care, to her spouse, with similar path, as yourselves…she wishes to connect……much appreciation.

For care giving…..Please meet: @Brighty @Cynthia Mac Thank you ladies….if you could share your care giving experiences, ideas, and more….to support our new member, giving care, to her spouse….much appreciated.

We are here, to support you…and your husband.

Welcome, again

Whitelilies

Hi, @PT1 I was caregiver for my Dad over the course of his lung cancer journey, but as it happens, the other “man in my life” had bladder cancer just a couple years before we met 8 years ago. He had the cancer removed by surgery and had his last followup just about a year ago now.

If your husband’s cancer is also on the kidney, surgery may not be an option.

As @Whitelilies says, there’s a lot of support here on this site, so dive into the discussions, and ask any questions you have. Someone is bound to have some experiences to share that will help you get through.

Hello PT1‍ . I had my bladder removed in September 2020 after cancer diagnosis December 2019. Two surgeries and 4 months chemo in between. All things considered it went okay. Keeping a positive attitude is the key for me. Life is different but cancer is gone. I am back to walking longer distances, eating and sleeping well. I am happy with the suppliers of my appliances and have a good routine for changing weekly. During my cancer journey I am lucky enough to have a great support system of husband, GP, oncologist, surgeon, stoma nurse, home care visitors, massage therapist and physio therapist.
Feel free to ask any questions. I am happy to share my journey to help you and your husband. Take care of yourself. My motto: Just Breathe.

Hi @PT1 and welcome! !!sorry about your husbands diagnoses. We will try our best to give you support and information. I don't have experience with bladder cancer but I'm also going to tag @Warriorprincess who can help you. Thank you Liz!!!!!

Thank you! Your response & care is very much appreciated!

Thank you for your comments. My husband’s situation is a bit unique in that the bladder cancer first appeared in his kidney at a low grade and now in his bladder high grade. We will know more at his next scope whether the BCG treatment in the bladder and chemo in the kidney has given a good result but it’s all a bit overwhelming … especially the waiting.

Thank you so much for your response. I’m very happy to hear that you are doing well post surgery. Not sure where my husband’s situation is headed but I agree … being positive is key. Wondering … did you have BCG immunotherapy treatment at any time?

Thank you for your response. It’s very much appreciated!

Hello, PT1
I had a large quick-growing tumour in the bladder. Tried TURPB but they could get only half of it. A complete removal of the bladder and “its little friends” sounded better than a series of chemotherapy and radiation to try working on getting rid of it completely over several months. Mission accomplished July 24, 2019!
A month later, on my discharge visit, my surgeon found a hernia erupting from my abdomen. Another immediate major surgery and a total of 2 months in hospital and rehab.

I am back home with a urine bag strapped to my leg and a smaller tube draining more fluids. My home care nurse visits twice weekly to clean and dress my incisions and my Personal Service Worker gives me a weekly sponge bath. I revisit the hospital every 8 weeks to replace a tube draining my left kidney.

Certainly not the life I enjoyed, but Cancer Free, virtually pain-free and able to sit in the sun or shade and have brief walks with a cane. Not bad for an 83 year old!😎😇
Clarke Edward

Hi there ,

Sorry to hear about your husbands diagnos. I also completed 6 round of BCG. Iam in my 6th year of NED (no evidence of disease) for Bladder Canncer. My current age is 60. Annual scope is coming up , they always put me on edge !

Feel free to connect , I will be happy to share experiences with you. Wishing you both well Liz aka warriorprincess

Thank you for your comments. So glad to hear that you are now cancer free! Take good care.

Thanks Liz. Wonderful to hear that you are doing so well! Sounds like you had the BCG induction protocol. Did you have maintenance BCG treatments as well! Best wishes for your continued good health.

I was stage 2 initially. When they went in to remove bladder it was also in the muscle and they look out some of the abdominal wall. I had a skin flap taken from left thigh to fill the hole. Pathology said stage 3. I did not have BCG immunotherapy.

Thank you for your response. I hope you are doing well now … all things considered. Best wishes for your continued recovery!

Best of luck to your husband & yourself. I had a tumor removed 3 years ago. Non muscle invasive. I did the 6 week program, then my scope was clear for 1 year. Since then I have had 3 week treatments every 6 months in an effort to keep it at bay.

I really like your advice to “just breathe” So important! Deep breaths.