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Caregiver Acceptance

grandmafay's picture
grandmafay
Posts: 1639
Joined: Aug 2009

I've written a couple of replies, but I thought I should say a little more about our particular place in this colon cancer fight. My husband has been a cancer survivor of stage IV colon cancer for six years. He has been through a lot - 4 surgeries, various chemo, radiation, and the three targeted drugs. His last scan following vextibix was not good with multiple metastasis. That's probably not spelled right, but you get the picture. Due to pain in his back, he is unable to tolerate a full scan. This was just the abdomen. Our onc decided to try traditional chemo again - cpt11 and 5fu pump which he characterized as a"Hail Mary Pass."
My husband is sick and tired of being sick and tired. He was willing to try the chemo again but does not wish to seek another opinion. He may also receive more radiation for pain. He has been treated and followed by the University of California at San Francisco as well as our onc. We feel that he has had very good treatment that has brought him this far. We also have a strong faith in God, and are thankful for the time we have been given. I think our outlook is positive, but others might not define it as such. We are positive we can deal with whatever comes and that the end may be nearing. We have strong support from family, friends, and church. We have talked about end of life issues and shared our feelings. I'm a little disturbed when people accuse us of not being positive or of giving up. I think my husband has the right to make his decisions. In fact, I think he's the only one with the right to do this. Our family agrees.
Are others out there in similar situations? Fay

kimby's picture
kimby
Posts: 804
Joined: Oct 2007

Fay,

You sound incredibly positive and optomistic to me. I've only been in treatment for 2 years, but we have the same attitude and conversations here. You are NOT giving up. Sometimes, enough is enough. I intend to be around a good long time yet but we are prepared for things to take a turn. I believe in living everyday the best we can and accepting the hand you're dealt...even if it isn't what you would wish for. I'm moving forward with long term plans (my son even postponed his wedding - as though I'm not even sick...LOL)but continue to live in the here and now.

I'm still at the point of following every treatment option and researching other options so I have a plan B. I won't always be willing to do that. My family gets it. It sounds like you and your family do, too. Thank God and all that is blessed. Your husband will make the best choices for himself and your family, because he loves you. I think most of us are ok with death, just not what it does to those we love. Time and Hope...

Hugs,

Kimby

Shayenne's picture
Shayenne
Posts: 2370
Joined: Jan 2009

Welcome to the b oard, and glad you're here, you will get alot of support here, It is amazing you hubby made it to the 6 year mark, and any decisions you make is sure to be good, I hope to make it that far, I also have Stage 4 CC, and have a positive outlook (well try to at most times), when you've had like 5 surgeries within a year, you're bound to get alittle down, but I try to pick myself right up, come to these boards and they all put a smile back on my face!

I wish you and the hubby the best and hope CC stays away, you are in my prayers!

Hugsss!
~Donna

grandmafay's picture
grandmafay
Posts: 1639
Joined: Aug 2009

Thanks for the feedback. We have so many blessings! Cancer isn't one of them, but good things have come from it. We have met some really good people, our family has gotten closer, and we've learned how many friends we have. I think this board will be very helpful, too. I also hope our story will encourage others. You can do a lot in 6 years and we have made a lot of good memories. Fay

angelsbaby's picture
angelsbaby
Posts: 1171
Joined: May 2008

I can relate to your situation In jan is when the drs said there are to many big tumors in the plevic area there is nothing more we can do so here comes our onc dr wanting to start chemo. my husband said no more and died in april of this year he fought for 17 months i wished we had years but that was not to be for us.My husband made the decision and i stood by that and him My prayers go out to you and your husband and family.

michelle

grandmafay's picture
grandmafay
Posts: 1639
Joined: Aug 2009

Michelle - Thank you for your healing words. I'm sorry your time with your husband was so short. My husband said from the beginning that he wasn't going to chase a cure. If this chemo makes him feel too bad, he will stop. Since you offered your prayers, I guess you believe in a higher being. We often talk about "healing" as opposed to "curing." Healing comes in many different ways even through death. I really appreciate that you offered me healing words even as you deal with your pain. Fay

jsabol's picture
jsabol
Posts: 1156
Joined: Dec 2003

Fay,
I am a stage 3 survivor; my dad passed away of metastatic disease 3 years after his original diagnosis. He, too, did everything he could, and when the treatment for mets to his liver made him feel sicker than the disease, he and my mom made the decision to stop treatment.
I am a nurse; I've seen how often the treatments for many diseases take away quality of life for the hope of some longer life. My dad went on Hospice at home, which initially offered much emotional support and understanding, and then expert management of his comfort in the ensuing months. His faith and family were very sustaining for him; I have only admiration for the strength he showed.
I always cringe when I read that folks are told to have a positive attitude and a cure will result. That is not the cycle of life; if all it took was a postive attitude, no one would ever pass away from any disease.
My dad developed a quick response to shut down "concerned friends"; he would quietly say "We all die from something, I guess I know what mine may be" and then change the subject. Your husband owes no explanations to anyone and he is blessed to have you and the rest of the family with him on this journey.
All the best,
Judy

grammadebbie's picture
grammadebbie
Posts: 431
Joined: Jun 2009

Hi Fay,

People can say the darndest things. Especially when they have no personal experience with this disease. I hope they don't mean some of the cruel things they say. How do you explain this journey we are on. It's not something we think of 1 or 2 times a day, it's something we live with 24 hours a day. Just the vulnerability we feel is something most people can't handle. I am proud of you both for facing this with faith, and wisdom by discussing not only end of life issues but how you want to spend the rest of your life. No one has the right to say anything about that. We should all support one another in our decisions. Of course we want to encourage everyone as we all have down days. You have been fighting this beast for years and I think you are two of the bravest most positive people I know. Hopefully the people who make these comments think they are helping. They just don't understand. That's why this forum is such a blessing.So much compassion and wisdom here. Can't quite express what I want to say. Just know that you are in my prayers and I think you're amazing. You keep up that "postive attitude" and most of all the faith you have.

God Bless You,

Debbie (gramma - there is another Debbie here so I added gramma)

grandmafay's picture
grandmafay
Posts: 1639
Joined: Aug 2009

Thanks, everyone. Your comments really help. Most of the time I just shake it off when people make comments about staying positive. My husband and I have talked several times about the definition of positive. We have explained this to our closest friends and even a few relatives. Those who have faced cancer up close really do understand. I appreciate the opportunity to share. My prayers are with all of you. My husband calls it PPMM - Power of Prayer and Modern Medicine. He says that's why he is still here. We really do feel the prayers of others. Fay

liverpoolgirl's picture
liverpoolgirl
Posts: 44
Joined: Jun 2005

well Fay
I am in agreement with you on this matter. I have been away from this site for quite a while, my dear husband lost his battle 11 months ago, he to battled for 6 years and yes he was also sick and tired of being sick and tired, went thru many chemo's etc etc.

It seems you are doing the right thing and I wish you the best in this battle
my prayers are with you
Debbie

grandmafay's picture
grandmafay
Posts: 1639
Joined: Aug 2009

I really appreciate your words and thoughts. My prayers are with you and your family. It's a little scary to face loss, and it's nice to hear from someone who has been there. I recently received an email that had this phrase, "What God brings you to, He will bring you through." I believe that, but I know it's not easy.
Our whole family was up for the weekend, and I know I have a lot of support. Next weekend we're all going RVing. We just bought a motorhome. I plan to push my comfort level and drive it. I did the test drive and nobody yelled at me. If any of you live in northern California, you might want to be extra careful on the highways next weekend, though. Fay

tmd
Posts: 39
Joined: Jul 2004

My wife passed away in 01/08. Just like you and your husband we faught it for 6 years. We had a wonderful life together. ( 35 years ) I was so proud of her at the end, but she was so tired and tried not to show it. The last few weeks were very special. To let go is not to say you quit , but to let the person know that you will always love them .

God Bless

Mike

grandmafay's picture
grandmafay
Posts: 1639
Joined: Aug 2009

I am so touched by the people who have lost loved ones and have written such encouraging words. Thank you. We started another round of chemo today. So far he's hanging in there. Fay

survivor wife
Posts: 7
Joined: Sep 2008

Hi Fay

I just read your post and the replys. I know first hand what you are feeling. My husband has been fighting this monster for just over four years. He has been having back pain for a couple of months. He did not think that the cancer was causing the pain. But after many tests and doctor reports, the onc has determined that it must be from the lymph nodes or the spots in the lungs. The pain is not in an area for it to be the liver mets.

As you stated, we too, have tried all the chemo drugs. some work for a little while some do not seen to work at all. The doctor has is now looking at radiation for the back pain. I too feel that we are about to enter a dark time. We have faith and believe that God can do all. My husband and I agree that we have done our part and it is in God's hands.

I just wanted to reach out and let you know that I totally know what you are feeling. I am walking in those same shoes.

I am interested in understanding more about the back pain. If you do not mind my asking, what did the doctor say caused the pain and how much releif did the treatment give and what was it like. Our doctor just mentioned this to us yesterday and did not give a lot of details yet.

I like to know what to expect. My husband depends on me to explain every thing to him. One person a work thinks that he should talk to the doctor not me but she does not understand what it is like. He does talk to the doctor but it helps if I ask questions and the doctor does not mind talking to me.

Please know that I will keep your family in my prayers.

grandmafay's picture
grandmafay
Posts: 1639
Joined: Aug 2009

I am also the primary questioner and researcher. My husband finds that works best for him. His back pain first got bad when we were on vacation in Montana last year. We ended up in ER. The ER doctor thought he had kidney stones, but couldn't find any evidence of stones. When we got home, it was discovered that he had a tumor wrapped around a nerve leading to the kidney. He had surgery to remove two tumors. It was decided that a third was too close to the spine for removal. The surgery relieved the pain for several months. Then he he started having pain caused by another tumor in the same area. This time surgery was not an option and they tried vectibix and radiation. That worked for a short time. Then back pain returned, and they are again considering radiation. He's not sure he wants to do that since it is every day. Since the cancer has now returned to his liver and has spread to the lungs and elsewhere, it is only being offered as pain relief. He is sleeping in a chair and taking pain relievers right now. He started seeing a pain specialist, and that has really helped. It didn't hurt that the pain specialist used to be our primary doctor before going back for more training to specialize in pain relief. He has even offered to make house calls!

We have been blessed with good doctors and wonderful oncology nurses. Our primary dr. is great. She keeps in touch with all the other doctors and reviews all the reports. She also doesn't hesitate to call the oncologists and ask questions.

I hope this helps. It's always good to know that there are others out there sharing your feelings. We really do feel the prayers and I'm sure you do, too. I will keep you in my prayers as well. Fay

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