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Colorectal Caregiver

CanadaSue's picture
CanadaSue
Posts: 339
Joined: Apr 2006

Hi,

I am looking for someone who is going thru the same thing as myself...

I don't know if caregivers are afraid to post here or what, but I sure there are more than just myself going thru this hell. I would be interested in listening and sharing. I have some very caring friends, but I find it hard to discuss something's with them. I would really like to talk to someone who is experiencing the same emotional roller coaster ride as I am.

My husband was dx in January '06 with colorectal cancer. 2 major surgeries later, and is now doing the chemo treatments, but is having a really rough time of it.

I would sure like to hear from anyone in the same situation.

Sue

NONNIE
Posts: 2
Joined: Nov 2005

Hi Sue,

I have gone through the experience of having my husband dx with colon cancer. I was his caregiver and cherish every moment we had together. If I can answer any questions for you, or if you would just like to share your thoughts, you can post here, or you may email me at: cherylc62@hotmail.com. I look forward to hearing from you, hang in there.

Cheryl

CanadaSue's picture
CanadaSue
Posts: 339
Joined: Apr 2006

Hi Cheryl,

I have sent you an e-mail.

Take care!

Sue

uni522's picture
uni522
Posts: 46
Joined: Dec 2005

I am a caregiver. I also have emotional ups and downs. My husband was dx'd Sep 05 as Stage iv colon. However, we are not eligible for any surgery because liver mets are too large. You are welcome to email me through the site and I'll give you my email address if you want to talk more! God bless and Good luck with the beast.
~brittany

CanadaSue's picture
CanadaSue
Posts: 339
Joined: Apr 2006

Hi Brittany,

Please check your e-mail

Sue

debcanmcg
Posts: 32
Joined: Jul 2005

I lost my husband on 4/15/06 to colonrectal cancer. The one most thing I which I could have changed during the time I found out he was sick. I which I could have stoped working and spent everyday with him. I spent as much time as possible with him. He never went to a doctors apt or to get treatment with out me by his side, but when he was at home and could function on his own I would go to work leaving him to be alone and think about dieing. I know this now to late. When he got worse I bought him a big mans recliner,tv and a baby monitor so I could hear him call me when he needed. and took him to work with me (we owned a business) he loved that. He was with me 24/7 for about 2 weeks. It didn't change the outcome but I would have enjoyed those memories too. We never discussed his dieing, tried to pretend he would get better. I would read all those internet information and I knew. I would pray he would just not die at christmas or near a birthday. He died on the day everyone hates April 15 tax day. Now I will truely hate that day.

CanadaSue's picture
CanadaSue
Posts: 339
Joined: Apr 2006

Hi,

First off thanks for the reply:

I am very sorry you lost your husband to this beast, and my prayers are with you!

While I do have to work (but have been told I can take as much time as I need away), I spend the rest of the time with my husband. We now do not put off doing the things we have wanted to do for some time, I believe he has chemo brain as he changed our holidays plans 6 times.
We do not discuss the cancer as my husband prefers not to have to think about it, and he just concentrates on getting better... He has checked out this site and found it very depressing to read, so I do not push him.
From the cat scans it looks like there maybe more lymphnodes involved, and I know that is not good.
For the most part the family tries to be upbeat, but some days we find it very hard. And it is hard to watch him going thru the treatments, as he has bad side effects.
From the way the doctors talk he may have up to 2 years (9 months of which are now gone) so I try to make the most of every day with him. And like you I have researched the net everyday to see if there is anything new out there.

Take care,

Sue

debcanmcg
Posts: 32
Joined: Jul 2005

PS I think one reason caregivers don't post here is their to tired and when your caregiving days are over you don't want to be reminded just how bad is was and that your left alone with noone to care far and your have spent a great deal of time just tring to survive. I hope your husband gets better and I hope you can spent a lot of quality time with him. Colorectal cancer is one of the hardest on the body it spread to fast to many places. Just hang in there and tell him you love him constantly. One of the meds my husband was on caused delusion? My daughter told me one day while she was caring for him that he cried all day thinking I had left him. I went over to the cough sat beside him held him and told him I loved him more than words could ever say and that he was my heart and I would always be with in and he with me in our hearts then I took him off that med and told the doctor to ok it with me before changing meds again and I would look up sideeffects first. Good Luck

luvumom
Posts: 1
Joined: Sep 2006

Oddly enough, I was first looking for a "Caregiver's survival" chat group. I plan to post my story and questions in another topic - but first, I can not tell you how helpful we found hospice. Frankly, they have seen it all - and when it feels like no one else can even slightly connect to what you are experiencing - they can - will - do.

It is indeed an exhausting and incredibly rewarding experience to be a caregiver. It isn't something a person can prepare for - or learn really. The ability to do this comes from love - it comes God.

It is exhausing, scary, upsetting, frustrating, unfair, intensely emotional (wonderful and horrible)...

It is a life experience that you wish upon no one - and there is an unfortunate special knowledge of life you gain - that way too many of us also have... (hey - maybe we should make up a secret handshake or something...) Some days seem never to end - but I promise - eventually you may find yourself deperately wishing for just one more of them...

All said - save the privledge of having my children, being my mother's caregiver was the greatest privledge God has ever offered me the opportunity to fully experience.

Please try to keep in mind, that every moment we exist is a gift. Some gifts are better than others - but still...

CanadaSue's picture
CanadaSue
Posts: 339
Joined: Apr 2006

A friend told me the other day that she felt sorry for me... I don't want anyone to feel sorry
about this fight we are battling. I want people to open their eyes and realize just how many people are battling this beast. When friends ask what the symptoms are I tell them, and I make sure if they or someone else has any of them to run not walk to their doctors, and no matter their age demand that the tests are done. My husband is 48 and they figure that he has had the cancer for upwards of 8-10 years. By the time they found it, it had already spread to his peritineal (sp) wall, and there was atleast 25 small tumors found, therefore they had to cut away most of it. I am not sure how many lymphnodes were involved. And they have now found atleast 1 more enlarged node that they are keeping an eye on.
He started chemo in June, at first the side effects were not bad, but now they are pretty bad.
I have difficulty seeing him so sick (usually lasts a week), then his white counts fall so low, that he can now only have the treatments every three weeks. So I am always worried will the treatments be effective enough, will he catch a cold ect... I think I do enough worrying for the two of us.
I used take life for granted....I now realize that each day is a special gift given to us, to do with as we choose, my days are much fuller now. I no longer put off that phone call to a loved one, or friend, and spend as much time with my husband as I can.
My husband does not like to talk about any of this and prefers to concentrate on getting better.
We just clelebrated out 30th anniversary this month and our daughter threw us a big party, and what really did me in was... when my husband got up and said as you all know this has been a hard year for us, and I have been living by just making it to the next milestone, I made it past my birthday, now our anniversary. This broke my heart, and when he sat down I told him we have many more milestones to go!
I wish everyone could live their lives as those of us going thru this are, to show more appreciation for those around us!

My thoughts and prayers are with you!

Sue

linny926's picture
linny926
Posts: 2
Joined: Sep 2006

My mother was diagnosed with stage 4 in 10/03. We have been through too many surgeries and chemo treatments since. As of right now, she is not able to be operated on, being that she has many small tumors in her abdomen wall. All I can say is that in the last 3 years, we have grown closer every day. It does get rough at times, since not many people understand what you are truely going through. When this happens, I get in my car, sit there, scream, yell, and cry for a little bit, so I can go back in and do what I need to do to stay strong for mom. Please feel free to email me at this site whenever you need.

CanadaSue's picture
CanadaSue
Posts: 339
Joined: Apr 2006

Hi,
Thank you for your reply!

My car will be seeing a lot of me. You have given me some options to release my frustration, as I do not want to let anyone see me upset,especially my husband. Our granddaughter (7) is the one who worries me the most, because she is so close to grandpa she is really having a hard time dealing with it when he is sick. She learned all about Terry Fox in school just before her grandpa got sick, and she knows that he has passed away. Once in a while we find her distancing herself from him
which we then try to get her over to our house as much as possible so that she can see for herself that he is ok.
This whole situation sucks, but I will now find a way to get over the frustration of not being able to do anything when he is sick, and back to what is important..living every day to it's fullest!

My prayers are with you and your mom

Sue

Dianne_W's picture
Dianne_W
Posts: 1
Joined: Jun 2006

Sue,
I have read through this thread and we have so much in common (everything except the ages of our husbands as I think yours is 10 years older than mine). We have been living in this hell since October 2005. My husband was diagnosed with Stage IV rectal CA and has gone through chemo/radiation, surgery and then more chemo. It has been the worst year of my life. We have two small children, ages 7 and 5, and we both work full time. He was very sick with chemo treatments to the point where he had a toxic reaction in August and had to stop treatments 3 short of what he was supposed to get. Some days I feel put together, but most days I am overwhelmed, sad and longing for a normal life again. This cancer has infiltrated every part of our lives and nothing is normal nor will it ever be normal again. I am struggling more now that the treatments are done. Wanting a normal life back and being unable to have one is the most difficult part. It's totally out of our control. I feel that most of our family and friends have no comprehension for what we've been through and what we continue to deal with. I have been disappointed by the lack of invovlement of some of our family members and I have left some old friendships behind to concentrate on some of the stronger ones. Some of my friends simply can't relate to what we're going through and relationships became more and more strained. This cancer has effected every part of our lives, work, financial, emotional, physical, and edven our sex life (which is now non-existent resulting from surgical and chemo side effects). Love to swap some stories with you. I find it quite comforting to know that others share some of the same experiences that I have gone through. Sometimes I think the caregiver is minimized by others. Our role is very important but we have equally as difficult issues to face as the patient does and have the most difficult job of making everything else work throughout the miserable journey. Some days I feel completely unappreciated for everything I do too.
Look forward to hearing from you or anyone that has experienced similar issues.
Dianne

CanadaSue's picture
CanadaSue
Posts: 339
Joined: Apr 2006

Hi Dianne,

Nice to meet you, but so sorry we had to meet here.

I do not know what normal is anymore, more or less we take it one day at a time.
I certainly know what you mean about family and friends not understanding, and I have given up even trying anymore. I used to e-mail updates on how my husband was doing to family and friends, but I now only send to those who either call or respond to them, some of his family have even stopped calling. I guess maybe they just have a hard time dealing with it. The way I look at it is the family and friends who do not appear to care are not worth my energy either. Alot of people will shy away either because they are uncomfortable, don't want to be involved, or that they just do not know what to say...They were not real friends in the first place! Friends are those who will stick with you thru thick and thin, I have a few of those friends and they try to get me out of the house at least once a week, without them I would be a real mess. Our daughter and son-in-law have also been my rock thru this, but even they are not as understanding now. My husband has chemo brain, and he tends to forget things now, I have learned to live with this but others haven't.

Being a caregiver is a thankless job, and I am sure that more than 1 person has walked away from it or at least thought about it. I love my husband dearly but this has certainly been a long road, and we still have a long way to go.

Please e-mail me here and I will give you my actual e-mail address. I have a lot more to say, and I am sure you have as well.

Please take care, and know that you are not in this alone, even if it seems so at times.

((((HUGS))))

Sue

obie1954
Posts: 1
Joined: Jan 2007

Dearest Sue - I lost my girlfriend to Cr 3 days after her 55th b-day in October. She was doagnosed at stage IV - way to late. Trish went through an 8 month hell of chemo. The folfox, etc torched her skin unbelievably, and all the horror that goes w/ chemo ensued...She was such a warrior! Time can be limited. Don't end up saying - I wish I had told him this or that - DO IT. LIVE IN THE NOW, because, unfortunately, the future could be short. I tell you this, not to freak you out, but to be prepared, make plans, seek spirituality (two of you) while you can. Love him every day - every way. Smile for him - cry too!

robswife
Posts: 2
Joined: Mar 2007

To all:
My husband was orignally diagnosed with Stage III colon cancer in August 2005. The cancer was discovered during an appendectomy where the appendix had ruptured. He had colon surgery one week after the appendectomy, 15 radiation treatments and 6 months of chemo. In March of 2006 he was given a clean bill of health, we were told to go ahead and have the port a cath removed as he wasn't going to be needing it anymore, his scans and colonoscopy were perfect. A short five weeks later he returned to the dr with what appeared to be a urinary tract infection but was actually a blockage in the bile duct and scans showed swollen lypmh nodes. More radiation, he was never able to begine the chemo treatments, the radiation caused a blockage in his small bowel, which the dr's refused to dx. We sought a 2nd opinion when he was told there was nothing more they could do and gave him 6 months to live. The IU Med center surgical team discovered his small bowel was totally blocked, when they did the surgery to remove the blockage, they found more cancer cells in his bowels. The surgery went as well as could be expected, but my husband had lost so much weight and was so weakened from the radiation, he never regained the strength to take the chemo to fight off the remaining cancer. On December 2, 2006, my wonderful husband of 32 + years went home to the Lord. No more surgeries, no more chemo, no more pain. I was his primary caregiver for these past 18 months. I would not have traded the time we had together for anything. I miss him so much, but I know he's in a much better place today, even though I am not. I wish they would find a cure for this horrible disease.

hopefulone
Posts: 1048
Joined: Jan 2007

Hi Sue. I'm new here and just starting the fight. My husband just had colon resection and has liver mets. We are in process of making appointment with oncology regarding chemo. We don't have a lot of info as yet, but I'm hoping a liver resection is possible in future. Just want you to know I'm experiencing that roller-coaster your talking about. I'm trying to keep a positive attitude and I research everything I can find, but it's an emotional roller-coaster for sure. I can't imagine life without my husband of 33 years. I'll pray for you and your husband.

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