One thing I learned/for caregivers

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MonaL
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Re: One thing I learned/for caregivers

Postby MonaL » Fri May 21, 2010 3:18 pm

Gaelen wrote: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.


That is what I hear too, and I think it's great advice. And it can even be adapted to beyond the internet. For those of us trying to juggle three million different things, it can help to put the focus back on what is important. Those extra 5 minutes, where ever we can get them, are to be treasured. Thank you cindy for that message and reminder!

And from a caregivers perspective, while I appreciate and mostly agree with John's post, I think it has to be understood that this place and the folks on it have become part of your extended family, and we are here to help in your transition, share in your grief, and gain from your insights and experiences. That's what families do Image
Dad, stage IV CC
NED since summer 2009
surveillance stopped summer 2014, due to age

hannahw
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Joined: Sat Mar 22, 2008 4:35 pm

Re: One thing I learned/for caregivers

Postby hannahw » Fri May 21, 2010 8:13 pm

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 think this is a valuable reminder for everyone, not just caregivers, about how much power we really have in the way we choose to live each day and each moment of our lives. I like the saying "I have cancer. Cancer doesn't have me."

My Dad went through a period when it seemed like he was seeing some doctor or another at least once a week. And since doctors appointments have a way of eating your entire day it can feel like a total waste. One morning, when the weather happened to be particularly nice (during a month when that's particularly rare for our area) he asked me if I thought the particular appointment he had that afternoon was really necessary. I couldn't really say so I encouraged him to call the doctor. They spoke for a bit and concluded the appointment was not the be-all-end-all of my Dad's treatment and that if my Dad preferred to skip the appointment and do something else with his time that would be great. With the calendar suddenly clear for the day we damn near didn't know what to do with ourselves. We decided to take a ferry to one of the islands we love. We had lunch, fished off a pier, skipped stones and went for a nice, long stroll. We talked and reminisced about adventures we'd had on this island when I was younger. Then we hurmphed about how time and money had changed this island we love and to hell with all the richie-riches who didn't really appreciate the true character of the old town. It was a great day and so much more pleasant than a day of doctors would have been.

Sometimes, you have to do the doctor thing. But sometimes, you don't. Sometimes, you have to do the research thing. But sometimes, you don't. And I suspect the times we really don't are far more frequent than we realize. I'm glad my Dad gets it and isn't afraid to say it. I love every day we spend doing what we want rather than letting his disease dictate our every move.

I wonder sometimes, if you were faced with the question of having 100 days left in your life of which 90 of them would be spent in the hospital or 50 days left in your life of which 50 of them were doing what you love with people you love, what would you choose?
Daughter of Dad with Stage IV CC

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Maggie Nell
Posts: 655
Joined: Wed May 27, 2015 1:57 am
Location: Melbourne, Australia

Re: One thing I learned/for caregivers

Postby Maggie Nell » Sat Jul 01, 2017 1:07 pm

cindyz wrote:
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.
DX April 2015, @ 54
35mm poorly diff. tumour found upon emergency r. hemicolectomy
for ileo-colic intussusception.
Lymph nodes: 0/22
T3 N0 MX

TXLiz
Posts: 226
Joined: Thu Sep 22, 2016 3:31 pm

Re: One thing I learned/for caregivers

Postby TXLiz » Sat Jul 01, 2017 2:29 pm

What a beautiful post. Thank you for reaching out, as I know this is a very painful subject that hits you at your core.

I am conflicted about researching on the internet. I am totally in awe of the extremely knowledgeable people here, and am utterly grateful for this forum and the wisdom contained in it.

I think researching about this disease is important, and advocacy is important. I think 2nd opinions are necessary.

However, I doubt I'll ever be knee deep in the internet and stumble across info that will cure me. I have read on here about some docs who seem to give up too soon or don't treat as aggressively as they could, so keeping an eye on information is important. But being wound deeply into constant research, studies, etc, isn't going to change most outcomes, imho. However, I can't imagine seeing a loved one stricken by this disease. I can't imagine the helplessness and frustration of wanting to save them.You did what loving people tried to do- you wanted to save him.

My husband barely speaks to me of cancer. He insists I will not die from it. He doesn't want to read about it. If I discuss it with him, and force him to confront it, he will cry and become very angry and say he wishes it was something he could fight and kill for me. Then he retreats back into denial. Everyone copes they way they can, period.

Your words are important and I will remember them. Thank you.

I am sorry for your loss. My deepest condolences.
And do not beat yourself up in anyway for and perceived "mistakes" you made. You made none. You did the very best you could out of deep love and care and did so wonderfully.
Vomiting and blockage 9/19/16 46 y F
R hemi colectomy 9/20/16
Stage 3 B CRC, located in cecum
3 out of 16 lymph nodes positive
perineural invasion/lymphovascular invasion
infiltrating, mod differentiated adenocarcinoma with a mucinous component
separate tumor nodules present in pericolonic adipose tissue
Baseline PET scan clear 9/16 CEA 0.5
FOLFOX 10/16- 3/17
April 16th, CT scan clear. CEA 1.1
Lynch "inconclusive"
Colonoscopy 10/5/2017 clear

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ocstacy
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Re: One thing I learned/for caregivers

Postby ocstacy » Mon Jul 10, 2017 2:27 am

obsessive Googling disorder (OGD)


Yes, that is me. I got my mom to try "Turmeric" she was very scared of it until I was reading to her about how it's great for inflammation and cancer.
I know the MD's say, don't try something new, but I really love the way it makes me feel. We will talk to the oncologists about if she should take it or not.
But, yes I do google way too much, even when I was pregnant with my first daughter. It does make you more worried. I have my good days and bad days. I just hate seeing my mom in pain, and I do not like how she never wants to go anywhere with me, that's super hard, and she hasn't started the chemo yet and that is what worries me the most.
I miss doing things with my mom but lately she has to be by a toilet due to where her tumor is located, right at the lower rectal site :(
Caregiver/daughter to dear mother age 77, dx 5/09/17 because of me!! :wink:
Rectal CA Stage 3 low grade adenocarcinoma- 6 cm
Neoadjuv. Chemo/Rad. start 7/10/17 ended 08/16/17
3D Lap. surgery @ Keck USC, Dr. Sang Lee 10/17/17 temp ileostomy
11/1 back @ hospital due 2 abscess/hernia - back home 11/06/17 antibiotics
NO LYMPHS INVOLVED! NEAR PATHOLOGICAL RESPONSE! YAY! :shock:
Chemo Xeloda post-surgery following reversal 2018
Love my mom, BUTT she is a horrible patient :roll:
Nam-myoho-renge-kyo :!:

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ocstacy
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Re: One thing I learned/for caregivers

Postby ocstacy » Sun Jul 16, 2017 12:39 am

Cindy,

I am so sorry for the loss of you hubby. I am a caregiver to my 77 year old mother who has Stage 3A rectal cancer. I cried my eyes out when the GI told me it was cancer and it didn't look good. I was so upset that he told me right away and how he thought she would end up with a colostomy bag. It was so hard to take in cause at first I was in a daze and then I was confused, then I started to cry. I never thought in a million years that my mother would have cancer. Her mother passed at 96, her father passed at 88, cancer NEVER existed in their family. She is the first to have this cancer in her family.

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 agree, I google everything and then I start to get depressed and anxious and then can't sleep. I am so glad I found this Colon Club. I found it on my own through "Google" out of all places. I have learned so much from products, to diet, to what to expect from the chemo, etc. etc. etc. I thank goodness live next next door to my mother with her younger sister and my family. My mom has a lot of support from me, my brother, my father, my two aunts, and friends. I did the most work, found her surgeon, oncologist, changed her insurance all within 15 days of her diagnosis. I just hate seeing her in pain and not wanting to do anything because of her bathroom problems. I feel like she cannot go anywhere because of her fatigue and bathroom issues. I hope that it will maybe get better. I am getting my 1st colonoscopy in the next two weeks and I am super super scared. I see people in their teenage years young on here.

Thank you for sharing. You are courageous and have a loving heart of gold. <3
Caregiver/daughter to dear mother age 77, dx 5/09/17 because of me!! :wink:
Rectal CA Stage 3 low grade adenocarcinoma- 6 cm
Neoadjuv. Chemo/Rad. start 7/10/17 ended 08/16/17
3D Lap. surgery @ Keck USC, Dr. Sang Lee 10/17/17 temp ileostomy
11/1 back @ hospital due 2 abscess/hernia - back home 11/06/17 antibiotics
NO LYMPHS INVOLVED! NEAR PATHOLOGICAL RESPONSE! YAY! :shock:
Chemo Xeloda post-surgery following reversal 2018
Love my mom, BUTT she is a horrible patient :roll:
Nam-myoho-renge-kyo :!:


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