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Seeking a community in my time of need

Conchal's picture
Conchal
Posts: 42
Joined: Apr 2011

Hi, everyone:
I am new to this network and write as a caregiver for my wife, who has struggled over the last dozen years with a variety of rare cancers and cancer-related issues: paget’s disease of the skin, underlying squamous cell carcinoma (both gynecological issues) and, just recently, urethral cancer (she just had surgery for that this week). The surgeries she has had include excision of tissue and removal of skin, coupled with skin grafts. She also had radiation treatments in the past. Between treatments for these problems, she has lead a remarkably normal life and bounced back very well from each challenge. I have been there with her every step of the way and plan to be in the future.
What I am really concerned about now is that my wife’s spirit seems to be withering away—she was particularly devastated by the last diagnosis and having to face surgery yet again. In the doctor’s office we spoke to a psychologist, and during that session my wife said she did not want to live any longer. Given her health challenges I understand why she said that, but it made me feel pretty sad and sorry anyway. It also made me think that perhaps I can no longer offer the kind of help she really needs anymore. She assures me she would never act on this impulse, and I do believe her. But nonetheless, I felt pretty bad for her and did not really know what to do or say to make her feel better. On the drive home, I felt like the breath had literally been sucked out of my lungs.
I have read so many comments from other caregivers, patients, and survivors in these boards about how others just ‘don’t get it’; that they feel alone and isolated; and that people often say insensitive things at the wrong time in response to hearing about cancer. I feel all these same things right now, more than I ever have in the past, and so I am turning to this network for support and advice. I feel that now more than ever I need some collective wisdom and understanding that only those who have been in my shoes can supply. In addition, if there is anyone out there who has been a caregiver or a patient with these same combinations of health issues, please let me know! I have not found many people who have dealt with all of these simultaneously!
Spring is here, but I feel pretty empty. I want my wife to be home, and while I wish I could somehow bring back that happy person she was before, I know that we may need to redefine happiness in a new way.
Conchal

CowboysGirl's picture
CowboysGirl
Posts: 14
Joined: Feb 2011

Conchal,
I am fairly new to this forum too, and am caregiver for my husband, who is terminally ill with Stage IV esophageal cancer. Unlike your situation with your wife, we have lived fairly healthy up until January when he was diagnosed, and then through whirlwinds of appointments and procedures and biopsies, to arrive where we are today, which is one day at a time.

I have no words of wisdom, except to say, that I wish if they couldn't find a cure for cancer, I wish they could come up with a way to instill peace and contentedness into us all-an IV of that for caregivers would be good too. I understand lonely-although we have family, it isn't the same as living in the house day by day, waking up with it, going to sleep with it, the big questions hanging over our heads.

I am sure my husband weary on some days, and wonders why it must be this way. Since this is all so sudden, and has hit us this hard, I can only imagine your wife's state of weariness.

Do either of you have a spiritual or religious faith you find strength in?

Sometimes i write letters to my husband. Just to tell him how much i appreciate him every day.

Like i said, i have no words of wisdom, just support. Just didn't want you to hang out here all alone. Even if i don't know exactly how you feel, i can relate, and sometimes, its just nice to know you aren't alone.

Take care and, maybe feel the sun on your face and breath in the spring for both of you every once in a while.

Conchal's picture
Conchal
Posts: 42
Joined: Apr 2011

Your kind words of support mean a lot to me and I thank you for responding. Just knowing I was heard is really great.

Today was a big day for us since my wife was able to walk for the first time after surgery! Small steps, short distance, but she has come so far! I also have discovered the chat room here and it is truly cathartic for me to talk with everyone there.

I am so glad this network is here....

Now on to a new week, which should be better than the last.

Con

grandmafay's picture
grandmafay
Posts: 1612
Joined: Aug 2009

I was the primary caregiver for my husband who fought stage 4 colon cancer for six years before it took him in October, 2009. I know that helpless feeling when we just want to fix them, but we can't. Recurrence are always hard to handle. I'm sure your wife is sick and tired of being sick and tired. I'm sure you are feeling very frustrated and helpless. Sometimes we forget that all we can do is the best we can do. Sometimes we forget how much it means to our loved one that we love them and support them. The most important thing we can do is tell them we love them. Cherish the time you have together. It is ok to cry together as well as laugh together. I don't know what I would have done without a sense of humor. Doug's was a little off beat and we laughed a lot. Take care. Fay

CowboysGirl's picture
CowboysGirl
Posts: 14
Joined: Feb 2011

So glad to hear your wife is making progress! Hooray! And yes-on to a new week :)

That Grandma Fay sounds like one smart cookie doesn't she?

I am so grateful for this forum!

Here's to you, your wife, G. Fay, and well, all of us having an awesome week!

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Conchal's picture
Conchal
Posts: 42
Joined: Apr 2011

I just got back from the hospital and check these posts...many thanks all of you for replying to me! I really, really appreciate it!

Con

CowboysGirl's picture
CowboysGirl
Posts: 14
Joined: Feb 2011

to say happy Monday-here we are! Lots of well wishes and happy thoughts to you & your wife today~
Rhonda a/k/a Cowboy's Girl

Conchal's picture
Conchal
Posts: 42
Joined: Apr 2011

Thanks so much CowboysGirl! And thanks for the friend ad
I hope U have had a great Monday. Have you used the chat function?
I may see U there!

Con

3Mana
Posts: 829
Joined: Aug 2010

Con,
Just want you to know that we are all here for you when you need to talk. I'm still not sure how I found this site when my husband died from cancer, but I'm so glad I did. The support on here is wonderful and even though we all come from all over the US & some even from other countries, we all understand. So sorry you have to be on here, and hope your wife doesn't suffer too much, but please keep coming back here for support, okay?
Be strong & tell your wife how much you love her every day!!! Carole

Conchal's picture
Conchal
Posts: 42
Joined: Apr 2011

I really appreciate your kind words and thoughtful
response. I have been back here every day. And
I feel so grateful to be here among such great people.

More small steps today in the hospital...but it's one day at
a time...

Con

CowboysGirl's picture
CowboysGirl
Posts: 14
Joined: Feb 2011

Hope all is well. I think small steps as long as they are going forward, counts as BIG success! Tell your wife we are rooting for you both! :)

Conchal's picture
Conchal
Posts: 42
Joined: Apr 2011

I appreciate the check in!

I wonder, too, how you are doing these days. I have read some of your posts and I know you have so much on your plate these days. I hope you are holding up and that things are going as well as they can be.

Night before last my wife had a nightmare that was brought on, we think, by the cumulative effect of the pain meds she has been on. To make a long story short, she woke up from this terrible dream and was disoriented. She got out of bed and made it to the door when the nurses heard her and got her back in bed. Luckily she did not fall or tear any of the stitches from the incisions. When I got there later, I asked her to tell me all about it repeatedly to get it out of her consciousness...I think talking about these things is the best way to expunge them.

On the bright side she is walking more (walking with the nurses more, that is, not taking a midnight stroll!!) but we still have not heard how long she will be in. I know that the doctors there will determine what is best..

All the best to you...and thanks again for checking in.

Con

grandmafay's picture
grandmafay
Posts: 1612
Joined: Aug 2009

My husband's second surgery required some heavy duty painkillers. He saw people coming out of walls and psydelic colors, and part of the time he wasn't even asleep. He immediately let the pain team know that he needed something different done. Just a tweak in the pain meds was the answer. These hospital days are hard. We were in a different city so I was in a hotel. I would spend the day with him, come back to the hotel at night, call family and friends to give progress reports, and be totally exhausted. Just the worry and the stress wore me out. I am keeping both of you in my thoughts. Fay

lucy07
Posts: 48
Joined: Apr 2011

Dear Con,
Today is my first day to join the network and I came upon your entries. My heart goes out to you as one caregiver to another. I took care of my husband through out his battle. He also was very outgoing and happy man, who suddenly became very ill with leukemia and skin cancer. Throughout the battle I too lost wind and was very sad, but I could never show it to him. I cried when he was not looking but I smiled when he looked at me. On top of everything else he lost his hearing so he looked at me for explanations, hope and support without hearing a word. When he came home after three month in the hospital our daughter wrote "I am glad that my Daddy is home but he can no longer hear me.........." He was fighting and hopeful till the end..His last words were "I love you"
I wish the best to you and your wife, and wish for her to get stronger and stronger in her recovery from surgery

Conchal's picture
Conchal
Posts: 42
Joined: Apr 2011

You have a very moving story, lucy! Thanks a million for the best wishes for me and my spouse. The loss of hearing must have been a real challenge.

I brought her home yesterday and so today is the first real day of caregiving...and it has been quite a day. Our bathroom looks more like a storage room with all the supplies laid out there: depends underwear, water proof tape, urostomy supplies, gloves, and everything else. I am glad she is home...the hospital was excellent and I will try and emulate the level of care but I am no nurse, for sure....but I think she had the best night's rest in days last night, sleeping in her own bed.

A home health nurse came by today and I learned a great deal from her...she had decades of experience and a lot of tips, some of which I knew but some new to me.

So today was a big step....in our journey towards a new beginning. At least spring is hear and the weather is warm.

Con

lucy07
Posts: 48
Joined: Apr 2011

I am so glad that your wife is home now. I would like to wish her from the bottom of my heart get stronger and healthier every day. I would like to wish you to stay healthy and strong for both of you.
Lucy

grandmafay's picture
grandmafay
Posts: 1612
Joined: Aug 2009

I always sleep better in my own bed. I'm glad your wife is home. I know you have some tough times ahead, but you will be an amazing caregiver. Don't forget to take care of yourself, too. Fay

lucy07
Posts: 48
Joined: Apr 2011

How is your wife? How are you?

Conchal's picture
Conchal
Posts: 42
Joined: Apr 2011

Hi, Lucy--My wife has been home about 5 days and it has been a real readjustment for all of us. She has a urostomy bag (permanent) that has given us some problems (leaks at times) even tho' we had some instruction from a nurse about how best to proceed. But we keep trying to get it right and we will eventually find the best approach.

In general it has been a week of real ups and downs, emotionally and physically, for both of us. My wife sleeps a lot and I find that I am really tired, too, juggling work, caregiving, and just thinking about how permanent all this is....things are starting to sink in now and sometimes I wonder about the future. But don't all of us here do that?

I hope all is well with you and yours....

Con

lucy07
Posts: 48
Joined: Apr 2011

We are all trying to stay afloat... My dad was diagnosed with colorectal cancer about 4 years ago.. He had chemo, radiation and surgery. He ended up with permanent colostomy bag, which I thought he would not be able to handle. He got depressed and angry. He had a few accidents with the bag. Everything he ate went to waste. He was not a large man to begin with but he lost all his weight.. he was about 109 lbs at 5'9". Mom cried all the time, and there was nothing we could do. Finally, after number of arguments he decided to go back to his original surgen. In November '10 he had part of his small intestine removed (it got twisted and grew in together), he spent 3 weeks in the hospital, went home and day later was rushed back for intestinal blockage. After 2 more weeks he came home. Looking at him now he gain some weight, he is happy, careful but very optimistic about the future..
So, my dear be strong..get some rest when your wife is sleeping.. take care of yourself so you do not collaps.. and take one day at a time.. it will get better
P.S. Do you have an agency that can send somebody to help out a few hours per week? HUGS

Conchal's picture
Conchal
Posts: 42
Joined: Apr 2011

A better day yesterday and a good night last night....Thanks for the encouraging words. We have a nurse coming for some home health visits so that will help.

Con

lucy07
Posts: 48
Joined: Apr 2011

I'm glad to hear that your day and night were ok..That's what it takes one day at a time..Take good care of yourself..HUGS

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