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I'm new; what do I do?

Raysbw7
Posts: 3
Joined: Apr 2004

My husband was diagnosed with bladder cancer 2 years ago, and when they removed his bladder, they thought they had possible gotten all the cancer. Last Sept., he started having pain and losing weight. They did many tests, and couldn't find anything in his side, or behind it. When they looked down lower, they found another tumor in his pelvis, pressing against his "good" kidney, his left one. Now, he is going through chemo, he's losing his beautiful hair, he can't eat, he's sick, and he has a lot of pain. I want to help and support him all that I can, but I don't know what to do. Any advice would be welcome. :)

Raysbw7

Tessyann's picture
Tessyann
Posts: 56
Joined: Apr 2004

Hi Rays I know its tuff times..are they going to beable to remove the tumor ?
Let ya know something there hair does come back and sometimes even prettier :) My husband will be having his rectum, prostate, bladder and his left kidney removed on the 5th of May. Its hard to keep there additude good tho when they are in pain I try everything to distact my hubby.. buying flowers fixing the yard, talking about future good thing we like to do together..dreaming of this and that remodling we like to have done anything none cancer. It hard tho not to have cancer on your mind 24/7 tho. Is there anything he likes to do that he still could ? Is he able to travel... nice to take a weekend trip somewere..just the two of you..
Just trying to help these are thing we do..

Shaydie
Posts: 4
Joined: Mar 2004

Welcome Raysbw! First, know that you are in the right place for support. The chat rooms, the message boards ...all are wonderful support and information for both of you. Second, I sympathize 100%. My fiance was diagnosed with bladder cancer, had his bladder removed (replaced with a neobladder), his prostate .. a whole bunch of stuff down there. At this point in time, the only thing you can do for your wonderful hubby is whatever he wants. I got ice cream, made jello and pudding, fixed a roast, bought popsickles. Whatever he thought he might want, he got, just as long as he ate something. I turned the TV over to him, the computer, the stereo, anything to keep his mind occupied and off the cancer. I fluffed his pillows, straightened the bed, put a bolster under his knees, kept 2 or 3 bottles of water or iced tea next to him. Brought him breakfast, lunch and dinner in bed if that's what he wanted. What I'm saying honey, is that you do whatever you think he wants. The most important thing though is to talk with him. It's vital to keep the lines of communication open at all times, for both of you. Please let us know what happens and keep us posted. If the newly discovered tumor is operable, that's fantastic. And the after-effects of the chemo will pass. Remember that it's temporary. Stop by the chat room and make some friends. You'd be surprised at how loving, accepting and friendly we are there. Adding you both to my prayers!
Shaydie Laydie

Deborah37
Posts: 2
Joined: Apr 2004

Hello Raysbw7,

This is so hard - noone wants to be where I have been, but it's possible that you will.

If you can bear with me for a paragraph or 2, maybe my experience can help.

My father was diagnosed with non-hodgkins lymphoma in 1999, and while mom and I were making preparations for his death, she was diagnosed with a rare form of liver cancer 9 months later, at 56.

I quit medical school, took over the family business, took responsability for my mentally-disabled younger brother, and then whammo - mom died last year - and I was there to see it. Meanwhile, dad is still hanging in there. (knock on wood).

It's strange, but living 1 mile from the World Trade Center, I have to say that 9/11, although shocking, was NOT the most devastating event of our lives that year.

I have just found this website tonight - and I have so many words to express, and I hope they can give you some insight (probabaly not comfort, or maybe - I don't know).

So, getting back to your question of what you can do -
I know some things for sure.

First, give your husband your best and strongest support that you can. Depending on his emotional state (my mother closed up in the last 3 months, but other people remain open), do whatever you think you need to do and say - there is no time to lose (actually, there is never any time to lose, because we're all terminal, aren't we)?

Second, spend as much time as possible with him (even if he heals, we're not sure yet), sleep with him when/ or if he has to go into the hospital. Insist upon it - If he winds up in the hospital, do what it takes - even if they threaten to throw you out, find someone sympathetic who can pull some strings. Get an extra cot in the room - if they don't accomodate you, find a hospital that will. There is ALWAYS a way.

Third, make sure he has everything he wants - apple juice, food, good books, drawing paper and markers, whatever.

Fourth - if you have children, especially if they are over 15, do not wait until the last minute to tell them the truth. They will resent you for having deprived them of his last months (if it is at that stage).
As for younger children, they have the capacity to deal with these things so much better...

Five: Make sure you get enough sleep - even if it means asking your doctor for something to help you - if you are exhausted (which you probably are), you will not be capable of helping your husband to the best of your ability.

Sixth - If you are abusing any kind of substance, don't berate yourself for it - just try to set a date when you can meet with someone who will be able to help you.

Finally, make sure you have someone who will be there for you in a New York second (or several people). In case this doesn't work out, you will need them, and you can feel free to lean on their shoulders with everything you have. They will not mind. In fact, they will feel honored to be able to assist you in this difficult time - absolutely DO NOT feel like you are burdening them. If you do not have anyone like that, let me know, because even though I don't know you, I could be there if it comes to that, if you want.

I wish you and your husband the best possible outcome. I know EXACTLY what you are experiencing, and I wish I could perform some magic on your husband, or on everyone I knew that I have lost over the last 5 years.

Somewhere in all of this chaos, I think we have to learn to be like the people of the far east - Japanese, Hindu, etcc, where they learn that the possibility of death, and death, is so much part of life, that the suffering and pain is not as severe.

I hope my email hasn't been hurtful, but helpful. I am just coming to terms with my own loses, but I thought maybe I could help.

Much love and support,
Deborah

Raysbw7
Posts: 3
Joined: Apr 2004

Deborah,

I really appreciate what you said; it means a lot, and I may need to lean on you, because I lost my mom 16 months ago, and my dad about 5 years ago. My sister lives in another state, and she is supportive, but she can't be there for me 24/7, because she has her own life, and she works very hard. If you want to Email me, let me know. There is a website I found for losses, before I found this site, called GROWW. It's wonderful, and the main chatroom is open 24/7, 365 days a year. The main room is for everyone, and there are also other chatrooms for specific losses, which are open at specific times; you can check those out on the main page, and find the one you need. I've been going there for 16 months, and it really helped me. In the meantime, I'm very glad I heard from you; it helped me a lot. Thank you.

Raysbw7

rhchristensen
Posts: 2
Joined: Feb 2004

Deborah, I appreciated your e-mail.

You have sure had your plate full.

I'm single and had prostate surgery on January 06, 2004, here in Des Moines. They got my cancer early, thanks to thorough yearly physicals. I didn't have to have chemo or radiation.

Everyday I thank my Heavenly Father. I also thank him everyday for my wonderful surgeons, Drs. Harlan and Steven Rosenberg, a father-son team. They both operated on me.

I'd never had major surgery in my life and was always in excellent health. Needless to say,I was terrified when told that I had cancer.

I'm a preplanning counselor for Hamilton's Funeral Homes here in Des Moines and my diagnosis hit close to home in my profession.

I was back to work in five weeks and have never felt better.

Deborah, I'm convinced that the Good Lord saw me through this traumatic event without any complications because he has greater things planned for me through helping families in need.

I envy the gentlemen that have gone through what I've been through that have a wife to share the experience with.

In closing, the Good Lord works in mysterious ways.

Everyday is a bonus!

God bless, Bob

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