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Caring for my dad... how do I prepare?

8 months 3 weeks ago #59348 by stephanie009
Hi Alan,

Thank you for responding, and for the accolades :) Your wife sounds like a pretty incredible person! It's an interesting position to be in as a new grad but unable (and quite frankly, unwilling - considering the circumstance of my father!) to apply for jobs. I am so grateful to be able to be here for my dad and to also have some (albeit, very very limited) knowledge and experience in the medical field. I appreciate your advice very much; I am definitely hearing the universe tell me how very important it is - especially now - to be living in the moment and loving each and every one as much as I possibly can.

All the best to you and your loved ones!

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8 months 3 weeks ago - 8 months 3 weeks ago #59345 by Alan

Welcome! Pat yourself on the back as a caregiver as I sometimes believe the caregivers have the hardest part of any major surgery or health events. My wife is also a nurse (42 years and recently retired) and she was wonderful on the TURBS, a triple bypass, carotid surgery among 4 other lesser surgeries. I admire all of you nurses.....never had a bad one either in my stays.....I am sure your Dad is proud of you! Hopefully, a few others can give you more insight and there will be someone that "has been there and done that" kind of advice as I am limited not having had a cystectomy.. Perhaps the best piece of wisdom over the years given to me is simply take one day at a time and eventually your Dad will be on the other side better and more effective in life.

DX 5/6/2008 TAG3 papillary tumor .5 CM in size. 2 TURBS followed by 6 instillations of BCG weekly with a second round of 6 after a 6 week wait.

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8 months 3 weeks ago #59342 by stephanie009
Hi Jacko!

Thank you so very much for your detailed and heartfelt response. You truly have given me a sense of ease in all this turmoil, and I will be thrilled to share your story and outcome with my dad. He already has some trouble with his bowels but he doesn't care about body image so I'm certain whatever the doctors decide is the best surgery will be what he does (assuming he will go through with it, which I hope he will -- especially after hearing about your experience). I agree - stubborn can sometimes equate to resilience, which is what we will be praying/hoping/wishing for.

I really appreciate you taking the time to respond!! All the best to you, Jacko!!


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8 months 3 weeks ago #59340 by Jacko
Hi Stephanie

I had my bladder, prostrate and urethra removed at the end of Oct 2019. I am 70. I chose to have the conduit and external pouch solution to minimise time under anaesthetic, complications and speed up recovery. Wasn't a hard decision; all the above are more important to me than body image. I was in hospital 12 days which contributed to a speedy recovery and easy transition to home life. My surgery took only 4 hours. In hospital I developed a good relationship with my stoma therapist. She helped me develop confidence in changing my pouch and learning night bag skills ( important for a good sleep). I saw her every week for a few weeks until my the size of my stoma reduced to its normal size and I had confidence to change my pouch and order supplies without any issues. My wife is not a nurse but she took care of my needs and made sure I was comfortable. I could shower myself and went walking everyday, building up my distance over a few weeks to about 5km a day. I took Panadol for about six weeks for pain medication with a few opioids early on. Didn't drive for 6 weeks. Didn't want to. One month out I reckon I would have been OK on my own, perhaps sooner. Biggest issue health wise after pain control was getting the bowels working. That took a lot of care but with the right preparations I got there after about six weeks.

Of course I had no chemo thankfully.

He will go well especially if he is stubborn! It's a tough gig, not for the faint hearted but now 6 months out I'm back to normal apart from peeing through my intestine into a plastic bag! Best thing is I get to stay in bed all night without any trips to the bathroom!


CIS diagnosed May 18
6 BCGs 2018
3 Maintenance BCGs 2019
Return of CIS Sept 2019
Bladder, prostate and urethra removal Oct 2019

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8 months 3 weeks ago #59338 by stephanie009
My dad, possibly the most independent man on the planet, has been diagnosed with Stage 2 bladder cancer. This diagnosis came after his being ill for so long he finally asked for help - which means he must have felt terrible for a long time before he called me - and spent 3 weeks in the hospital getting tests and balancing electrolytes, etc.

My dad is 77 years old, has lived alone for over 35 years (by choice), and takes care of a farm by himself. He's kind, supportive, funny, charismatic, and stubborn as a mule. He's never shared health issues with any of us 3 daughters, his family, or his wife (my mom) when he had one. That means I learned of his 16 year history with prostate cancer from the urgent care doctor. He never called about the radiation, the procedures, his struggles, his hospital stays, nothing. And we are together often on weekends and for all holidays, and in touch via phone as often as possible.

He's since had a bit of reality hit him pretty hard, and now he wants me to take care of him and help out and be his support - which I am thankful to be able to do and grateful that he's choosing me. So he's had this diagnosis and they want to remove his prostate and bladder - and he refuses to do chemo so there's really only one other option which I very much hope he doesn't choose - and I just want to know how much his life will be affected. How involved should I plan to be? I have teenage kids, I just graduated nursing school at 40 years old, I am also independent, but ready and willing to move mountains in order to be able to care for dad. So the issue isn't what happens to me but more what shall I prepare for? I appreciate anyone who's read this far and has any advice, information, stories, or otherwise.

Thank you.

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