newbie caregivers, r/c surgery, be prepared, not scared!!!

Ginger,
Merry Christmas to you and to your husband! May he eventually realize he could not have recovered without your help and support.
Sally

Pat and Joe,

From a caregivers stand point I wish I had this info before hand. I knew about some of it but I would have been less anxious if I knew about it right off the bat. Just look at it as, okay here comes the weight loss, but its okay, its part of the recovery. And , oh the strength is not there, but its okay one day at a time. Laughing about some of it helps too. Because honestly ," depends," we never thought it would be part of our life at our age. Its all temporary, remember that!!
My first session in changing Genes bag was hilarious, it was like a craft project, I wanted it perfect, and Gene wouldn't let me decorate his bag,, not even for the holidays. Keep a light atmosphere, it helps...Merry Chritmas to all my caregiver friends...Ginger

Ginger very well put and I will say this as a patient my wife is a nurse. The first week or so was rough but as soon as I was able I would try to do little things just to show effort on my part made me feel good and the last thing I wanted from anyone was pity. I hated what happen to me but really there is nothing you can do but to try and be strong and be a fighter I think this makes it easier for your caregiver to see you really going at out at and battling this disease with all your might. BTW I was a T3 G3 and thanks to the my team of Dr's up at the Univ of Penn I am cancer free as of now. I also got the chemo first Pat my surgeon said he had his best success rate of survival for the type of tumor I had doing it this way I guess he was right. Cheers, Joe

Ginger, Thanks so much for this post. It will certainly help me and others be prepared. My husband is still doing the pre-surgery chemo so I will keep these things all in mind.

Think of anything else we should know please post or anyone else that can add to this post that has been through it would be greatly appreciated.

hugs
justme pat

After going thru the ever so stressful time with bladder cancer, from the symptoms, to the turb, to the tests, another turb, then surgery,and now recovery, it may help to gather all my thoughts and pass them on to the newbie's...
Fight the stress from the beginning, don't let it eat you alive, as it will. Separating you from your partner, the one having the r/c is hard to do. Its happening to both? Yes and no! If its your husband they worry about the cancer, how far has it gone, will my path report be promising, will we have sex again like it was, will I make it thru surgery, when will my life return normal, when will it end..
Caregivers, wife's or husbands as thinking, Oh God, what do I need to do, I feel bad too. I need to be strong for him or her. And yes you do..If you are approaching surgery you need to know that you will get thru. At the same time remember itis a hardfew weeks afterwards. Strength no matter what your age is challenged. It is a slow recovery, meaning weeks to months. We are 3 months from surgery Dec.14. Does my husband have issues still? Yes!! Has your doctor explained the surgery, its effect on the body, especially the bowels? From a emotional stand point it just hurts you to see your husband or wife having to struggle to get better.Remember, weeks to months, progress is slow. Be prepared for the hospital,ask for that private room, stay with him when you can, all night if you want. Limit visitors til getting home. Most of all comfort them with kind words,if they say they look bad say they look good,just a little tired. etc. after getting home don't be stressed about being home bound realize now that will be the case. Face it before it comes, it will make it easier.
After surgery your partner will have these things, in most cases,an iv in both hands, a jp drain from the left side, a cath in his penis, maybe a tube going down his or her nose and his deversion, in our case the bag. Be prepared to see that,but don't be scared
These are important to know about as they are not scary , just the norm for patients after an r/c. My husband had an iv in his neck as well, but not all do.
Your partner , with the cancer, will experience a big life change situation.This is a change you will see, but they experience. Treat them with compassion. If they need to where depends for a few weeks, be prepared to see that, know they may lose weight, be prepared for that, know that they may lose there muscle tone, be pre-pared for that, they will get thru all of that, BE PREPARED FOR THAT!!!!
The ins and outs of an r/c really different for all who go thru it. Its as individual as the person having it. Ask questions, Don't think beacuse some get infections you will to. Get the deversion you want, not what someone wants you to have. Be prepared it will be different, you will feel sad sometimes, it will pass.
YOU WILL GET THRU, YOU WILL GET STRONG, AND YOU WILL GET BACK TO LIVING.
CAREGIVERS BE PREPARED TO TAKE IT AS IT COMES, AND DO YOUR BEST TO COVER ALL THE BASES. HIS OR HER RECOVERY WILL BE BETTER FOR IT WHEN YOUR READY AND ABLE.
AND REMEMBER A LITTLE COMPASSION GOES A LONG WAY.
BE PREPARED, NOT SCARED.....Ginger Beane