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He’s On Board!
Hello my fellow Caregivers and Survivors,
My husband has agreed to go for his surgery in March or April! I cannot tell you how relieved I am and grateful for this site.
We’re going in to see his doctor this coming Monday to set up set up the surgery date. He still has to recover from his last surgery, which, after reading the surgery notes again, realized just how intense it was and why it’s taking him so long to heal.
We had the worst argument we’d ever had in our 6 year relationship. There were tears and frustration and anger and at the end of it all, there were hugs and kisses and I love you’s.
He shared how terrified he is and assured me it wasn’t the sex that was really the most important thing to him. It was just a way of expressing his fears to me because he thought I would abandon him if he wasn’t able to have sex anymore. Silly goose!
I reiterated that he means the world to me; that this or whatever life throws at us we will face together; that this was not a cliche’ phrase when we took our vows. It is a phrase that bonded us together and that my love for him is not based on one body part.
I also said I had every hope that we would still be able to maintain a healthy sex life. I reminded him that his prostate is in excellent condition and that might help with saving the nerves around it when they took it out. I also shared (again) the experiences the men have had here and that there’s a high percentage of men (this, we heard from his doctor) that are able to have a sex life after surgery.
So, now that we’ve agreed on this, what’s next? How and what do I need to do to prepare myself and him for the Cystectomy?
I’m not sure how to proceed at this point.I’m not sure what kind of other emotions are going to come up for him, but I think the most important part is being able to prepare logistically, as much as we can.
Of course, I will be renting a motel room close to the hospital and will most likely spend the first few days ’round the clock in the hospital with him. I’m thinking of bringing a reclining lounge chair so I can sleep next to him. I want to keep an eye on him for a couple of days and nights after surgery.
He will be letting his daughter know. I’d like to have a bit bigger team than this, like our two closest friends. I know he doesn’t want to tell very many people, but I think having a few loved ones know will be very helpful for both of us.
We’ve jumped the most important hurdle thus far. He’s not going to put it off any longer.
Best to all, Rayn
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17 Replies
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My cancer was hidden by my Diabetes and frequent urination. My blood my microscopic so you can bring up seeing a urologist for ANYTHING out of the ordinary. Frequent urination, blood it the urine, pain while urinating or anything different. Let them see their doctor and a urologist just to be sure. I could just be an infection, but it could be more. Dont scare them by saying it is cancer but to have it checked by a urologist as soon as possible in case it is an infection. Let the urologist decide what the problem is
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gees my spelling is going all to pot. the word is spelled politely Rocky
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Hi Rayn, I hav’nt been on for awhile but am now catching up and read the good news that your hubby decided to have the surgery. That is great.
I understand his not wanting people to know , I battle with myself because only my kids and a few people know I have had bladder cancer. I think I should try to make people aware of bc and what can cause it, but then figure the majority of people will polightly listen then figure it won’t happen to them and keep doing what they want to anyhow.
So I just slip into conversations if you ever pee blood think bladder cancer and get checked. My brother also had it so I use him as the example. He didn’t care who knew.
I am just a private person . As for the surgery I have never had it so I will leave that to the experts on here that have had it and can guide you. God bless and keep you and your husband . Rocky
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Rayn,
What is important is that your husband be able to read about the experiences of the survivors, there are so many here, so that he can see that his anxiety and fear is normal, but that he will not be “Less of a person ” after the surgery. If the sites are from survivors than he is looking in the right places, but if it is just medical sites then he will undoubtedly be scaring himself. Regardless of how much of a provider he is, this has nothing to do with being the breadwinner or provider, this has to do more with the reservation of his life and dignity. If you read what so many of the responses and stories are you will get some very good information on dealing and coping.
Has your husband decidid which replacement option he wants or prefers. I can tell you the experiences of the people on this site is invaluable in seeing what the real options mean in terms of post operative care and dealing with the neo bladder, Indiana Pouch or Ileal Conduit are. It is more than coming on surgery day , going to sleep and waking up with a replacement for his bladder. He needs to be aware of it, and see what the learning curve will be for each option.
Good luck to your husband and yourself and I hope that you can get your husband to read the experiences on this site. -
Thank you Alan for your kind words of encouragement and support. There’s been a glitch after the doctor’s apptmnt. today, which I will elaborate on when I post the new thread.
I wish I could get him to read these posts with me, but her prefers to glance at different Bladder Cancer Sites and peruse on his own. If he knew I was posting here, I don’t think he’d be very happy.
I can’t stand keeping this from him, but he’s so adament about us not talking to anyone about this. I think he’s embarassed and ashamed in some ways, for which I cannot blame him at all. He’s finding out for maybe the first time in his amazingly healthy life that his dignity is being challenged by cancer and it’s not something that he’s used to (gosh who would be?)
He’s a strong man for everyone; his family, his friends, even aquaintences. He’s definitely “The Man” of the house and I don’t mean that in a chauvanistic way. He’s incredibly responsible in all levels of life and I’m very proud of him. He’s normally a happy, jovial person and enjoys life to the fullest.
Oh and it’s “his” daughter from a previous marriage. I have a daughter from a previous marriage as well. He’s going to tell his daughter when the time comes for the surgery.
Best regards, Rayn
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Rayn,
You and your husband are in the same position as my wife and myself. You have been getting a tremendous amount of good advice. I hope your husband is reading the responses along with you. You appear to be a strong support for your husband and you appear to be doing everything right. Telling your daughter was a good idea, this way she will know why her father will be in the hospital so long after the surgery. I told my sons as well and they are very supportive. They are both adult and have been getting me any thing I have needed along with my wife. Just keep being as supportive as you can, but try to arrange a little ME TIME for yourself. It will relax you and make it easier to deal with your husband. I am still recovering from my last TURBT, it has been 5 days and there is still a little pain and bleeding, but
I know that my urologist had to dig further and deeper.
Anyway, the best of wishes to you and your husband. -
Rayn!
I’m sooooo happy for you! I can’t post too often due to work/life schedule, etc. but I have been thinking about you a lot since you first posted.
(Just wrote a long response post and lost the darn thing, so I’ll re-write it later!)
Just wanted to say that I really get your process to get to this point with your husband. We had our own version of it and thus felt really empathetic to all your ups and downs.
So glad you had that wonderful breakthrough discussion! You’re both lucky to have each other.
Alrighty, more later! So very glad for you and can imagine the palpable relief!
Cheers,
Cyn2
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Thanks so much Duke! Appreciate your input very much. Will keep everyone posted.
My husband is experiencing a lot of pain in his scrotum still and he’s still bleeding. It isn’t heavy but it’s still a problem. We’ll talk to the doc on Monday. They had to take out a tumor that was right on the the tip of his bladder just before the urethra. They also needed to surgically remove scare tissue from his urethra that was blocking him from urinating properly.
I don’t know if they dilated his urethra too much or what, but he’s in a lot of pain.k
Rayn
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Rayn; Glad to hear that issue is resolved. Just want all to go well for the both of you. Will be following your progress.
Wishing you the best.
Duke -
Hello Duke :)
Thank you for your support and concern. Put your mind to rest on that issue.
He agreed that he was being stubborn and unrelenting because he was terrified, but after this last surgery and the difficult time that he’s had, he said it would have been better to have the Cystectomy last month.
Under normal circumstances, We are very capable of talking things out in a quiet manner and respecting each others wishes and decisions.
These are not normal circumstances. He has run out of time. The surgeon said the in situ is too close to going into the lymph system and the he warned him of this two months ago before my husband opted to just have the existing 3 tumors removed.
I completely understand what you are saying and I respect you a great deal for being concerned about the blame that could possibly fall on me.
I’m not willing to take the risk of my husband dying. Time is of the essence.
Best regards, Rayn
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Hi George :)
Many thanks for your kind words of encouragement. I’m usually a pretty laid back person . . . he’s the major Mover and Shaker in the family, but this was too serious to keep quiet about. I’m very glad we got it all worked out and we can go from here as true partners.
You’re right about it not being about the sex. It’s the fear of cancer and the future without a prostate and bladder. Being terrified is normal.
Fortunately, his prostate is in excellent condition and there’s every possibility that they will be able to save at least some of the nerve endings.
So, we’re off for a weekend of activities that will rejuvenate us.
You take care as well.
All the best, Rayn :)
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Rayn; Want to wish you and your husband the best. I have already stated how i feel about the surgery, but in your husbands case the one thing that concerns me a little is your husband has to be doing this for himself. I hate to see the burden put on your shoulders, that can be a heavy load for someone. You both have time to settle that issue. AS for the hospital, where i had mine done, they did everything they could to make my wife comfortable.
I hope you get the same treatment.
Wishing you both the best.
Duke -
Thanks so much Doc! I was anything but speechless two days ago lol!
Best regards, Rayn :)
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Rayn
This is wonderful news indeed! I am sure the “discussion” was very theraputic. You probably opened some very important issues that will make your relationship stronger. You guys are now ready to take on the world.
It was never really about the sex. It was always about the fear. The fear of cancer and the fear of feeling inadequate and the fear of losing you. You now have thrown that fear out the window.
Since you have so much time to wait for surgery, don’t be overwhelmed by the anticipation. Take life as it normally goes by. We took a weekend away and did not allow any electronic distraction. We forced each other to look beyond the surgery and to our NEW life; cancer free.
There will be some rough patches but you WILL smash right through them. Communication is the key and you guys have opened that door BIG TIME!
Good Luck. We are so proud of you! That discussion took some guts. But it really set the stage for the future.
George
Light a man a fire and he is warm for an evening.
Light a man ON fire and he’s warm forever.08/08/08…RC neo bladder
09/09/09…New Hip
=
New Man! [/size]
Rayn
I am so happy for you two. I don’t know what to say!!
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