My intro.

[jimdickenson@rogers.com]

Hello, My name is Jim, I am 66 years old, married with 2 adult children and retired and I have Bladder Cancer and expecting bladder removal at end of September. I expect to visit this site to better help me understand the trials and tribulations you and your families all must have had or will soon experience. I would thank you for any information that may help me through this experience.

[marysue]

Hi Jim!

Welcome to Bladder Cancer Canada, the site no one wishes they had to belong to. I have not had to have my bladder removed but have had quite the adventure just the same. As you probably have learned having your bladder removed is a big surgery, so please don’t hesitate to post questions, concerns here. I’m sure that you’ll hear from others on this site soon as we have several here that have been down the road you’re soon going to go down.

You can also phone Toronto at 1-866-674-8889 and ask to be matched up with a patient volunteer that has a similar diagnosis. That volunteer will be contacted by Toronto and if you give consent for them to contact you they will and you will have someone to talk to. Patient experience is valuable. It takes one to know one. It is what helped me get through the tough stuff and helped me keep things in perspective. Take care and please keep in touch and let us know how you are. ((((HUGS))))

[cheryl9]

Hello Jim

Thank you for making contact. It is one of the best things you can do for yourself and those that are close to you. This site is the best that I have found for giving a realistic perspective of BC. Other sites will scare the pants off you and leave you feeling like you have 1 1/2 feet in the grave. This is absolutely not so. I haven’t lost my bladder but have gone from low grade to high grade. Thus, I did my research just in case. Terrified the whole time but found the postings on this site really helpful. Go through the threads of other people that have had their bladder removed and this will really help. I started out terrified that I might lose my bladder and not wanting that at all. In the end, I would rather lose my bladder than lose my life. Re: if that darn cancer gets out of your bladder the average life expectancy is one year. Not an option for me! Made the possibility of losing my bladder way easier to handle.

What I love is the reference to the “new normal” once your bladder is gone. Life really does go on. It is just different thus your “new normal”. I have a cousin that lost his bladder and it sure hasn’t slowed him down!

Remember, live life, love life and never regret waking up in the morning. Every day holds its own promise even if it is just a hug from someone you love. Take it and cherish it.

Take care

[shelties]

Hi Jim. welcome to the forum, but sorry for your reason to be here. I still have my bladder, so I can’t relate to bladder removal, but there are several people on here who can. I just want to wish you the best of luck with your surgery at the end of Sept. I would suggest though that you find out all you can on which apparatus to go with after the surgery and I know people on here will be more than helpful to you in that regard.

Best of luck.
Lorraine

[Gord]

Hi Jim, as others have said, welcome to the site no one wanted to belong to. Having said that, the site and the people on it have been a great resource for me in my journey with bladder cancer. I was age 52 when I was diagnosed with Stage 2 bladder cancer in January 2012. Went through three months of chemo before my radical cystectomy in June 2013. Been cancer free ever since, 26 months now! I went with the neo bladder, and have to say that overall I am really pleased with my result. Working well, few complications – I do have to self cath regularly, but have gotten used to that. My life is back to normal. Traveled for three weeks last summer, and just back from a 10 day trip to Nfld. No problems whatsoever. Would be happy to share my experiences or answer any questions you might have, either here on the forum or in a private message. The surgery, recovery period, and the adjustment to your new normal are a challenge to be sure, but entirely doable with a positive attitude, a sense of humour, and the help of friends and family, and your medical team. We are here to help with that as well. Looking forward to interacting with you.
Gord

[jimdickenson@rogers.com]

Thank You Gord.

[jimdickenson@rogers.com]

so many words of support from so many people, trust me it helps !!

[jimdickenson@rogers.com]

On the lighter side, because I have hearing aids, wear glasses, have dentures, now this, I had a tee shirt made for my recovery ” SOME ASSEMBLY REQUIRED “

[Rhonda-Lee]

Welcome Jim! The BCC forum family is amazing. Well said Gord, I too have a neo bladder, March 31 this year. It is different for women, I have to say I’m a bit jealous of the fact that when men have the RC, they don’t have permanent incontinence. That is the only part of my new normal that I’m not happy about.
That being said, I am SO HAPPY to be CANCER FREE!

Don’t forget everyone, on September 27th there is a national charity walk for Bladder Cancer Canada in your city.
So get out there and spread the word……
“If you see RED, see your doctor”

P.S Love the T-shirt idea! I think mine will say, “Made in Canada 1968, missing parts, still in good working order”

[rock2013]

Jim, welcome! this is the right site for you. I am at the 3rd stage of the roller coaster of emotions, hope and readjustment (1 more to go!). Early detection of cancer is so important, in October 2013, I was diagnosed with stage 3 high grade invasive and very aggressive bladder cancer. There was no time to waste. One TURBT and not so good lab report. Lots of bleeding they kept me in hospital for 4 days post TURBT.

I took 4 months of chemo prior to surgery. Only minor side effects. 26 May 2014 surgery day done in Ottawa. 5 hours and 20 minutes, no major complications. 6 days in hospital post surgery.

Bladder, 21 lymph nodes, prostate were removed. I elected the external bag. I am on my second year after surgery and doing very good. I took 25 radiation treatments post surgery. I see an oncologist 2 times yearly and ultrasounds and lower abdomen SCANS. It will take 5 years to be declared cancer free and of course this is my goal. I was 72 when I had surgey.

I will answer all your questions. Fight and remain positive. Forget what was, accept what is and plan for tomorrow. Sam

[marysue]

I love the “some assembly required”. I too wear glasses and hearing aids. I don’t have dentures but have had crowns done. As I’m aging and the aches and pains come and go, I know that more parts are a possibility. I once said to my mother-in-law when she was complaining about osteoarthritis pain one day – our bodies are like cars, the parts wear out and often need replacing. She quipped back with a line “I’m a bit rusty but I still run”!

[Val]

Hello Jim

Welcome, to the crazy, but supportive BCC family. So sorry you have bladder cancer.

You’ll get great advice and support here. There will be others here who can help you with what to expect, what to ask, how to get thru it. There’s a few “bent” people on the site, but they also have much wisdom to share.

I will be thinking of you later this month. I hope you keep your sense of humour.

You might want to read an article about the Rollercoaster of Emotions that we all experience. It’s on the main page under “facing bladder cancer” & “important reading.” Here’s the link http://forum.bladdercancercanada.org/en/facing-bladder-cancer/important-reading/

[Author]

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