One thing I learned/for caregivers

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cindyz
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One thing I learned/for caregivers

Postby cindyz » Thu May 20, 2010 5:00 pm

It's amazing what a few days will bring, and how things can change on a dime...for better or worse. I'm not used to posting in this capacity without a "Stephen question," and my new definition is awkward. I'm not really a caregiver anymore, not right now, and I'm feeling a little lost. I've been thinking about how I could continue to help anyone here, mainly because I want to give back some help that I received so often.

I thought I would post something to the caregivers who still have loved ones living with cancer. I have been very deep in thought/reflection since Stephen's death on May 9th, and of course there are regrets and second-guessing that I suppose come with the grieving cycle. I have felt utterly and completely suffocated with sadness to the point of just not doing a damn thing. Probably not the best thing, but it's my thing, and as long as it doesn't last too long I'll be okay with it. I did manage to go out and buy some books yesterday, and since then I've been devouring them. I bought (of course) some Kubler-Ross books (On Grief and Grieving and another one entitled On Life After Death, a book entitled Widow to Widow (yeah, weird to be one) by Genevieve Ginsburg, and I'm Grieving as Fast as I Can by Linda Feinberg- a book for younger widows and the unique problems and situations that we have).

So, here goes. One of the biggest changes I think I would have made during Stephen's illness is getting off the internet. I researched all the time, obsessively. I wish now that I had put my computer down and just given him an extra massage. Or just talked to him. Or whatever. Anything with him. I was so busy trying to save his life that I didn't live his life with him as fully as I now wish I would have. I don't blame myself, but looking back I realize how sacred our moments were together. I DID realize that then, just not to the extent that I realize now. Maybe I should have only researched when he was sleeping...things like that cross my mind.

I'm okay with this, I don't beat myself up about it. However, I do wish I would have had the foresight to know this ahead of time. It's a very difficult balancing act, but being away from the constant everyday-ness of it allows me a certain clearer perspective. Maybe that will help someone here...I hope so.
Wife to Stephen, dx 5/13/09; 45 yo
Stage IV w/numerous mets to liver, 2 to LNs
Colon resection 5/25/09
Folfox/Avastin, Folfiri/Avastin, Folfiri/Erbitux-progressed
Sir Spheres 2/2/2010
Admitted to hospital 4/23/2010
Passed away 5/09/2010

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miked
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Re: One thing I learned/for caregivers

Postby miked » Thu May 20, 2010 6:32 pm

Cindy,

First let me tell you how sorry I am for your great loss, but coming from a law enforcement background with some years spent on the SWAT Team, they don't come any tougher than you! I am in awe of your fighting spirit and self sacrifice for the man you loved.

As a caregiver to a Stage IV spouse myself, Angie has told me over and over that she could not research the things that needed to be researched. She was not emotionally or physically able to do so and still does not want to do it even though she happens to be doing quite well. I, like you, jumped right into devouring about 15 books in a month, reading thousands of internet pages, scouring message boards like this one. To this day, I still try to stay right on top of all the latest info, hence I am here right now. I am truly a Type A+++++++++ personality and boy has it come out the past 26 months. I truly appreciate your view in retrospect, but don't beat yourself up too bad. Stephen knew you were there, fighting with him and for him and there were things you needed to know to be his complete advocate, to keep the onc's on their toes.

Hindsight is always 20/20, but the rest of us caregivers are greatful for your insight.

God Bless You and Your Family!!


Mike
Wife DX 3/08 Stage IV
4 Liver Tumors & Too Many Spots to Count
Xelox/Erbitux 4/08-9/08
10/08 LAR/ 2 Sm Spots Rem Fr. Liver
Irinotecan/Erbitux/Avastin 12/08-04/09
CEA .7-1.5
Maint. Erbitux 10/09 -07/10
07/10 Done Chemo/NED/Yance Protocol Since Day 1

Twinsmom
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Location: Illinois

Re: One thing I learned/for caregivers

Postby Twinsmom » Thu May 20, 2010 7:53 pm

Cindy,

We all make the best decisions we can based on the facts at hand and conditions at the moment. You chose to fight and from what you have written about Stephen, that's what he wanted. Don't look back at anything you did during Stephen's last weeks. I hope you choose to stay with this board for a long time. You have a lot of insight to offer and I think I speak for many when I say that we care about how you and your girls are doing and want to hear the updates.

Wendy
rectal cancer dx 12/19/08 at age 46
49 yrs old
stage IIa
chemoradiation 6 weeks Jan 09-Feb09
surgery 4/13/09, clean margins, temp ileo
Folfox 5/09 - 10/09
Takedown 12/07/09
Clean CT scans April, 2010 and May 2011: NED
Twin sons, age 13

Lee
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Re: One thing I learned/for caregivers

Postby Lee » Thu May 20, 2010 9:51 pm

Cindy,

I think we all 2nd guess our actions after the fact. I did that when my mother passed on. You did an awesome job under extreme conditions, something tells me Stephen appreciates all that you did for him. We don't have an owner's manual to refer to for direction, it would sure help if we did.

I am so sorry for your loss,

Lee
rectal cancer - April 2004
46 yrs old at diagnoses
stage III C - 6/13 lymph positive
radiation - 6 weeks
surgery - August 2004/hernia repair 2014
permanent colostomy
chemo - FOLFOX
NED - 10 years and counting!

hannahw
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Re: One thing I learned/for caregivers

Postby hannahw » Thu May 20, 2010 10:01 pm

I'm not used to posting in this capacity without a "Stephen question," and my new definition is awkward. I'm not really a caregiver anymore, not right now, and I'm feeling a little lost. I've been thinking about how I could continue to help anyone here, mainly because I want to give back some help that I received so often.

Once a member of the club, always a member of the club. Whether you're a patient, caregiver, survivor, surviving family member, friend or whatever, if you've been on the colon cancer journey you have valuable insight to share. It seems like many caregivers stop coming here after the death of their loved one, or at least come a lot less frequently and that's totally their prerogative. But I also think the journey continues and there's plenty to continue sharing, both about how you continue to live and what you learn about your experience upon reflection.

I'm okay with this, I don't beat myself up about it. However, I do wish I would have had the foresight to know this ahead of time. It's a very difficult balancing act, but being away from the constant everyday-ness of it allows me a certain clearer perspective. Maybe that will help someone here...I hope so.

I think this is very true. It's like looking at a picture up close. If you hold it too close to your face you don't have the perspective to appreciate and understand the big picture. You have to step back in order to see everything that is there.
Daughter of Dad with Stage IV CC

NWgirl
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Re: One thing I learned/for caregivers

Postby NWgirl » Thu May 20, 2010 10:38 pm

You don't need to fall into any particular category - you're Cindy - you don't need a label. Hind sight is always 20/20 - that was a nice thought to share and I'm sure it will help others to walk away from the computer. And you are always welcome here. Take what you need, give what you feel will be of use or just hang out. And if/when you feel it's time to move on, that's okay too. You are a wonderful person and you have much to share with the world.

Thinking of you often.
Belle - "Don't Retreat - Reload"DX 10/07 Stage III Rectal
Surgery 11/07; 27 of 38 nodes
Perm Colostomy 8/11
12/10 recurrence lungs & LN's
VATS Jan 2011
Radiation Oct 2013
Chemo for Life
2012 Colondar Model

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jmarie
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Re: One thing I learned/for caregivers

Postby jmarie » Thu May 20, 2010 11:13 pm

Cindy it is great to hear from you. I continue to think of you and your daughters daily.

Your advice is good for patients also. As the patient I know that at times I get obsessed researching, meanwhile my hubby is watching TV by himself, or playing with Lilliana without me there. One day while I was engrossed in an article, I hear them playing and giggling together and it broke my heart to realize I was so obsessed with fighting to survive that I was missing out on what I was fighting for. So I made a descision then to only get on the internet when they are sleeping or hubby is doing yardwork and baby is asleep.

Good advice
DX Stage IV 11/25/08
mets liver lung, kras mutant
Baby 2yrs old! I am 32yrs
Too many chemo txs to count
trying to find a clinical trial
"You can't stop the waves, but you can learn to surf"

Surroundedbylove
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Re: One thing I learned/for caregivers

Postby Surroundedbylove » Thu May 20, 2010 11:17 pm

Oh Cindy,

I'm so glad you posted. I've thought of you often and wondered how you were doing. Your honesty about your feelings is good to hear. I think that we all wonder what those feelings may be like at whatever time they come in our life with our spouse and you are providing such a valuable insight by posting and sharing. I hope you feel strong enough and welcome enough to share - I think you are certainly welcome here. No one needs a "label" but I understand that it is hard when you don't have a label. I've had a similar feeling in the past. You have been a wonderful caregiver and your insights for other caregivers and the patients for whom they are caring is hugely appreciated.
Surroundedbylove

Rectal Cancer @ 43, '08
Clinical: T3,N2a,MX (IIIB)
6 wks XELOX & radiation
LAR, colonic j-pouch, & temp ileo '09
Surgical: ypT3,ypN0,ypMX (0 of 20 nodes)
FOLFOX; XELOX
Ileo Takedown '09
SIL Dx 2014 - Rectal T3

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karin
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Re: One thing I learned/for caregivers

Postby karin » Thu May 20, 2010 11:30 pm

cindy,
I agree with hannahw and sbl...........but, I am glad you are sharing with us and want you to know your insights are important to us...we know and expect that we will have regrets no matter what, but, you can't crucify yourself, you're only human!!
You did everything right...period!! It would be a privilege and an honor for anyone in Stephen's position to have you by their side!! He is and will be missed......his spirit lives on! Keep posting, it's cathartic, for you and for us....

Luv and hugs,
Karin
Karin
BFF dx'd June09 w CRC & peritoneal mucinous carcinomatosis @ age 40
She beat cancer for 20 months!

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hopeful
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Re: One thing I learned/for caregivers

Postby hopeful » Fri May 21, 2010 1:27 am

Cindy, you don't need a label. As a caregiver I certainly want you here helping people like me. You have a wealth of information, both about cancer and about living and dealing with it.

I appreciate your thoughts about being on the computer or reading books on cancer, researching all the time. My husband is like miked's wife in that he doesn't like to read about it at all and would prefer that someone else do it and just tell him what he needs to know. But I sometimes feel like I spend time here when I could be spending it with him. Sometimes it feels like it's the only thing I can do to fight this thing. The feeling that knowledge is power really describes the feeling.

I think you did exactly the right thing when Stephen was going through all this. We always seem to look for things that we could have done "better" after the fact, but I think everyone here has only the greatest admiration for you as his caregiver and wife. Cindy, you did the right thing.
Caregiver to husband diagnosed 11/09 stage IIIb colon cancer
Surgery 11/5/09
12 rounds FOLFOX beginning 12/18/09
Folfox finished 6/3/10
Last scan Jan 2015
NED since Dec. 2009

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Gaelen
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Re: One thing I learned/for caregivers

Postby Gaelen » Fri May 21, 2010 5:58 am

cindyz wrote:It's amazing what a few days will bring, and how things can change on a dime...for better or worse. I'm not used to posting in this capacity without a "Stephen question," and my new definition is awkward. I'm not really a caregiver anymore, not right now, and I'm feeling a little lost. I've been thinking about how I could continue to help anyone here, mainly because I want to give back some help that I received so often.


Cindy, can I add that I think you posts going forward from this point of view have the potential to help many people, patients and caregivers alike.

I thought I would post something to the caregivers who still have loved ones living with cancer. I have been very deep in thought/reflection since Stephen's death on May 9th, and of course there are regrets and second-guessing that I suppose come with the grieving cycle. ... So, here goes. One of the biggest changes I think I would have made during Stephen's illness is getting off the internet. I researched all the time, obsessively. I wish now that I had put my computer down and just given him an extra massage. Or just talked to him. Or whatever. Anything with him. I was so busy trying to save his life that I didn't live his life with him as fully as I now wish I would have. I don't blame myself, but looking back I realize how sacred our moments were together. I DID realize that then, just not to the extent that I realize now. Maybe I should have only researched when he was sleeping...things like that cross my mind.


Cindy, most of the responses so far have focused on telling you the 'you did the right thing' - and what I hear in them is that people aren't listening to your epiphany in the way you intended. I'm hearing you say that a little time and a little chance to reflect outside of the crisis has given you the chance to realize that the are things you would change - and 'researching all the time, obsessively' is something that you would re-prioritize so that you'd spend waking time, alive time with Stephen. I'm hearing you realize that all the computer time in the world can't give you another five minutes with Stephen, and this realization that "I was so busy trying to save his life that I didn't live his life with him as fully as I now wish I had."

I believe you when you when you say that you would make different choices - and as hard as it can be to say, I do hope that others can learn from this. People may regret that they didn't find THE thing that would turn care around for their loved ones - but in my experience, they regret more that they don't have that extra five minutes. When the cancer patient is alive, it's very difficult for a caregiver (and sometimes for the patient) to hear that message. It's too easy to convince yourself that obsessively researching = knowlege is power = the best thing you can possibly do for your loved one, or for yourself if you're the patient.

I don't hear in your words that you want to be reassured that you 'did the right thing.' I hear that you know at the time you made the right decisions, but that looking back, you have the strength to realize that you could have made a different decision with your time, and had some of those five minute bits that you can't get back. I'm hearing that you're not second-guessing yourself - but that you're being incredibly brave in trying to point out to others who may be in your situation you can make the choice to spend those five minutes offline and with your loved ones...and that maybe that's a better investment of time.

I'm okay with this, I don't beat myself up about it. However, I do wish I would have had the foresight to know this ahead of time. It's a very difficult balancing act, but being away from the constant everyday-ness of it allows me a certain clearer perspective. Maybe that will help someone here...I hope so.


And I sincerely hope that the hardest folks to reach, the people who are caught up in obsessive Googling disorder (OGD), hear the truth in your words, and take a look at their own time investments now, while they still can. Time is the one thing you can never get back - and I greatly respect your bravery in being willing to recognize that the most important thing might be to spend that time with your loved ones while you can.

Be well, Cindy - and be in the moment, but here's to not letting the moment control you. ;)
Be in harmony with your expectations. - Life Out Loud
4/04: dx'd @48 StageIV RectalCA w/9 liver mets. 8 chemos, 4 surgeries, last remission 34 mos.
2/11 recurrence R lung, spinal bone mets - chemo, RFA lung mets
4/12 stopped treatment

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sallya
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Re: One thing I learned/for caregivers

Postby sallya » Fri May 21, 2010 7:49 am

Hi Cindy,

Thank you for sharing so openly and honestly. You touch so many people on this board because you are so open and such a kind, giving person. I won't tell you not to second guess yourself -- you have to go through your own personal grieving process. But I do hate to think of you beating yourself up. Try to be kind to yourself and to forgive yourself for anything you think you could have done differently. And don't pressure yourself to be or do more than you can right now. You deserve time to grieve and time to heal.

And thank you for sharing this advice with all of us. I think it's a good reminder for everyone, regardless of whether you have cancer or are a caregiver to someone with cancer, to live life to the fullest everyday. That's a hard thing to do in reality - I'm sure it's something we all struggle with when we get wrapped up in the stresses of life. I will take your advice to heart, Cindy - I promise.

Even in your time of grieving and heartbreak you are giving to everyone on this board - you are too much, girlfriend.

XOXO,
Sally
Wife of "Dom;" dx 7/3/09
Stage IV with 4 mets to the liver and ~25 affected nodes
Colon resection 7/6/09
Ileo 7/6/09
Starting Folfox + Avastin 8/13
www.dominicsally.blogspot.com

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John603
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Re: One thing I learned/for caregivers

Postby John603 » Fri May 21, 2010 9:05 am

Hi Cindy,

When I was first diagnosed, I joined a Yahoo messageboard for colon cancer. The board had three or four widows who posted advice daily. When I looked into their history I found that a couple of them had been widows for over five years and they had never been able to move on after their husband's death. They thought it was their responsibility to help others on this journey. (I can see posting occasionally but not daily) You will always be welcome here, but please don't make this your life. Your life is what you do day-to-day. Your life is your daughters. Your life is your friends and relatives. I told my wife that when I pass away, I don't want her to focus on colon cancer. (Except of course for the kids to have colonoscopies)

Put the books and internet down. Go have fun with your daughters this weekend.
John

Dx Stage IIIC (14 of 36 LNs +) Jan 07, age 42
Colectomy Jan 07
Folfox + Erb'x Mar 07
Recurrence in Lymph Nodes Feb 08
Folfiri + Avastin Apr 08
NED Dec 08
Recurrence in lungs & pelvic LNs May 09
Folfiri/Avastin May 09 - Nov 09
Erb'x/Irino Dec 09

girlnextdoor
Posts: 204
Joined: Tue May 19, 2009 2:44 pm

Re: One thing I learned/for caregivers

Postby girlnextdoor » Fri May 21, 2010 12:50 pm

Thank you, Cindyz!

I hear what you are saying. Please keep posting as I wish to learn from your experience.

Lisa
Husband, age 52, DX RC 8/2007
Stage III
5FU,Rad
Surgery (APR) 12/2007
FOLFOX
2 lung nodules 5/2008
HNPCC postive (MSH2 mutation)
Mets to lung 5/2009,lymph nodes
FOLFIRI, Avastin 7/2009
Xeloda 1/2010
Four children (18,15,12,11)

Lisa, loving wife

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surfingon
Posts: 448
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Re: One thing I learned/for caregivers

Postby surfingon » Fri May 21, 2010 2:23 pm

Cindy,

One of the most powerful lessons I learned from my dearest friend when she lost her husband to cancer 6 years ago was hearing her say over and over again, "When this is over, I am determined that when I look back, I will be able to say that I have no regrets about anything that I did or did not do." She has worked as a hospice nurse for 20 years, and told me that regret is THE most common and debilitating emotion that she sees-- it is practically universal. When I was walking down this long winding road with my beloved husband, I used "I am doing my very best" as my daily mantra. Please know that all of us on this forum admire and honor you for unquestionably having done your very best for Stephen. When you find yourself second-guessing your actions, remember that it is impossible for any of us to do anything more than our very best at any given moment.

I'm delighted to see your post, have been thinking about you daily as I do my very best to accompany my dear friend on her colon cancer journey; I am currently acting as her advocate while she is hospitalized for treatment of appalling side effects from chemoradiation for anal cancer. It is a heartbreaking, mind-boggling journey loaded with flashbacks to all that hospital time with John...

I wanted to add a most excellent book on grief to your list: The Five Ways We Grieve by Susan Berger. My hospice nurse friend says that it is by far the best book yet on grief. In the back of the book are an expensive list of online groups for grief. Just a few: http://www.widownet.org, http://www.griefnet.org, http://www.growthhouse.org

You continue to be in my heart and prayers,
Rachel
caregiver to husband John
Stage III CC 3-05
liver+ colon resect Nov '06
FolfoxA , FolfiriA
7 liver RFA's, 1 lung RFA
died April 29, 2009
http://sheddinglightonthecancerjourney.wordpress.com/
http://sheddinglightonthewidowsjourney.wordpress.com


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