Input Would Be Helpful

Hello .4 weeks ago my wife had emergency surgery .would you believe they found a massive tumor the poor girl 42yrs of age had colon & rectum, abdominoperineal resection plus full historectomy she has metastatic adenocarcinoma three of of ten mesenteric lymph nodes are positive. i resigned my position to come home & caregive to her till next year when i have to go back to work &( bring home the bacon $$ )& for 3 weeks now i have done this as caregiver doing everything i can to make her Journey comfortable .she has a perminant colostomy (stomar)now & she goes back to the Onocologist on wednesday 14th dec 2005 for the Chemo set up stage i guess both of us are in a ? period as to what n where we go from here,is it all worth it ? doing Chemo ? however living now with this has not been easy her attitude has changed & she isolates herself in her room & hardly talks anymore but never complains & im proud to say she has taken this in stride well from the outside point of view ,but inwardly she is not the same & i have just become a caregiver servant & get no responce from her at all she just watches TV sleeps alot (understandable so ) but now i wonder where i am in this as i do not even get a hello ,goodmoring or goodnight word spoken to me its im non existant in a sence & recently when i bought a card & sat it on the mantel nothing was shared about it at all its a big ajustment but i am looking at a bigger picture & spiritually understand.i do not know what the future holds its one day at a time & im just learning through this experience, is there any other caregiver who has or is going through this ? id like your input. thanks for reading this .Phil

Hello Phil,
I can't tell you what to do as I am not walking in the same shoes as your wife. I can only speak as I am a caregiver to my husband who has cholangiocarcinoma, (cancer of the bile duct). Your wife had surgery only 1 month ago and I'm sure she is experiencing an extreme turnaround in her life to say the least. She is probably wondering where her life is going from this point. Give her time to respond to your gestures of speaking to her, cards you've given her and questions you may ask her or yourself. I pray for patience and guidance everyday. I too had to quit work to give my husband all the attention and comfort I can give him. You may not feel this right now but you are the most important person in your wife's life now. Just by you being there for her is the greatest part in her coming out of this emotionally. Hold her hand, tell her you love her and help her do whatever she can be up to doing for the day. Even if it doesn't seem much, showing her you are there for her is important. You have needs too and you will find time for some of them in time to come. Have patience, keep a positive attitude and have perservance. It's not easy but you are definetely not alone. Penny

Phil

I am no great expert but I have some experience. As both
patient and carer.

This time, six years ago, I had a Hartmann for a metastatic
(into 4 lymph nodes) colon cancer which resulted in a
colostomy and then 6 months of full OLFOX chemotherapy. Etc.

Back in 1988 I gave up work to care for my son who had a
glioma grade 4 (brain cancer). It had started in 1982 and he
was given no more than 2 weeks to live. He finally died, after
years of slow disintegration, in 1992.

No two people are the same or experience what look like
similar problems in similar ways. But I think it always helps to
communciate. Do you think your wife would like to be in touch
with someone who has had a similar experience who can talk
closely to her?

How about you? Would you like to have a fellow carer to talk
to?

Where I live (NSW) the State Cancer Council has a Helpline (13
11 20) that can put either or both of you in touch with
someone to help. Even if you do not live in NSW, I am sure that
they can refer you to an assistance point in the State in which
you live.

Since I had my cancer I have become part of a trained patient-
to-patient network based on the Sydney Royal Prince Alfred
Hospital wher I was treated. We "veterans" help new patients by
talking through problems with them and sometimes referring
them to clinical or social experts who can assist. I have also
formed a colon cancer support group.

There is a lot of help available out there. You do not need to be
alone. Feel free to get back in touch with me through this
Message Board.

I'm with you.

John

Phil,
My name is Vinnie. I lost my father 3 years ago to kidney cancer after he suffered for only 6 months. My dad was not depressed at all, but one day he was rather cranky and not quite himself. I believe it was my mother that questioned him. He responded, "Do you know what it's like to know that you're going to die and die very soon?" She was stunned, to say the least.

My dad verbalized that we so take living for granted until we realize that we can't live that much longer.

I say that to say that maybe your wife is trying to come to terms with that. Maybe she is trying to find her way, emotionally. I once posted a message entitled "Taking yoursef out of the equation." I wrote that as caregivers we have to learn to let it be about our loved ones and not ourselves. That is probably the hardest thing to do because we are used to our loved ones considering us, as we do them. But, at a time like this, your wife may have a problem thinking that way because of her unfortunate circumstances.

I pray that you and your wife can find a way to enjoy any and all time together. I pray that she can appreciate you and you can appreciate her even if she can't return that to you.

I hope that I have said something to help you.

Praying for you,
Vinnie

My husband has had lung cancer for 2 1/2 years now and i feel like i am losing my best friend and my husband of 33 years. We go and do what ever we can when he feels like it. I am still working for now but don't know how long that will last. Hang in there and pray for more strength than you ever had.
Sharon

As someone who has survived cancer and as someone who is caregiver for an uncle, I want you to hang in there. Your wife may be doing okay outside but her insides are very confused and scared. Do what you can for her, dont let the comunication between you end. Talk to her, tell her how you feel and give her time and space to come to you with those feelings also. Do something for yourself also. make sure you get outside often and go out with other friends sometimes. I remember during my Chemo treatments I was unable to get up the stairs to bed so had to sleep on the couch, my wonderful other half would sleep in the chair next to me rather than leave me downstairs alone. My prayers are with you and your wife. Good luck.
Susan