Calling on the caregivers

Hi Rayn-My name is Alanna and I posted on men and bladder cancer post. I posted our story on there so maybe we can help someone with this horrible disease. My husband Norm is 66 and I'm 62 and I wish sometimes things would go back to the way it was before cancer, but this is life. We are so lucky that his surgery went good, neobladder, and it;s been 7 months and things are just getting better. Hope things get better with your husband. Alanna

Rayn, I think I speek for everyone when I say, you have come a long way in such a short time!! We are proud of you, keep it up. You are an insperation!!

Hi Rocky, I'm so very glad you had the information you needed for your husband. What a disaster that could have been without you being aware of everything.

I have so much respect for Survivors and Caregivers.

Even in the short time I've been here, I read and sense the love and compassion everyone has for each other and it is so helpful.

I'm willing to walk through hell and back for my husband and I know he'd do the same for me. He already has in a lot of ways. He took care of me for two years handling my health issues. Now I get to return all the patience and kindness and compassion . . . and especially being an extra pair of eyes and ears when we talk to the the doctors and nurses.

Education and preparation is so critical.

All the best, Rayn

Hi guys , I guess I never had the feeling of helplessness with my husband. He is such a strong person and had no clue about anything medical, so this gave me a chance of finally being able to do for him and navigate the medical waters for him. I knew he would do the hard part taking the treatments and I got to baby him.
I was lucky that he told the drs to do what they had to do to save his life and he would listen to them. I just kept them on their toes. I had a briefcase with notebook that I used to orginize all his medical records. This went to ALL apps. with us. I had copies of everything, test , bloodwork everything we needed to stay on top of it all. Sometimes I had copies of test that the drs didn,t have yet.
we were going in for a simple procedure and as they got him ready in same day surgery I questioned the nurses about what they were going to do. I figured out they were going to do something completely differnt from what he was supposed to have done.
I made them put the brakes on everything until we contacted the dr. What a mess, they would have cut him open and taken the wrong parts out. WE made the decision to leave that day instead of taking the chance something wrong would be done.
The role of caretaker is VERY important. Rhea you should talk to your neighbors and see if they can blow snow for you sometimes. Most people don't mind helping if they are made aware of the situation. Though Some people are afraid of stepping on someone elses toes. I am so sorry that you have to carry this heavy load and my prayers are with you. Rocky

Thank you Cynthia and Rayn, I will look into those referrals. Hope you all have a good weekend
Rhea

Hello Rhea, I am so sorry you aren't getting the advocacy you need but the sites Cynthia gave you should help a great deal.

You are a very courageous woman to have taken this on alone, but there's no reason for you to continue down that road. It is absolutely unthinkable that family and friends cannot be there in some way to to support the both of you.

This is a wonderful place to get your fears and feelings vented. Lots of accurate and helpful information and a lot of compassion.

My heart goes out to you as well as I'm sure you'll experience from all of us here.

You and your husband are in my thoughts and prayers.

Best regards, Rayn