Reflections on caregiving

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O Stoma Mia
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Joined: Sat Jun 22, 2013 6:29 am
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Reflections on caregiving

Postby O Stoma Mia » Sun Sep 09, 2018 8:30 am

A new blogpost has just appeared in the Colon Club's Archive for the ‘Caregivers’ Category:

http://colonclub.com/category/caregivers/

It's entitled, "DEAR CARETAKERS -- THANK YOU ISN'T ENOUGH"

If you browse through that archive folder, you will see other reflections on the caregiver's role, written either by patients or by the caregivers themselves.

stu
Posts: 819
Joined: Sat Aug 17, 2013 5:46 pm

Re: Reflections on caregiving

Postby stu » Sun Sep 09, 2018 11:23 am

Interesting article . I once had a patient with a really difficult degenerative condition . His wife held down a full time job , raised their kids and physically attended to his every need from feeding to changing him . I once asked how she managed . “ Because he would have dove it for me” .
For me it was a response to the love and care I had been shown .

For that you push through all the difficult times to ease the situation as best you can .
Stu
supporter to my mum who lives a great life despite a difficult diagnosis
stage4 2009 significant spread to liver
2010 colon /liver resection
chemo following recurrence
73% of liver removed
enjoying life treatment free
2016 lung resection
Oct 2017 nice clear scan . Two lung nodules disappeared

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kirac
Posts: 255
Joined: Sun Jun 09, 2013 10:34 pm

Re: Reflections on caregiving

Postby kirac » Mon Sep 10, 2018 8:22 pm

Good luck everyone. I just wanted to drop a line because I rarely come on here anymore. I was a caregiver. And I got so much help from this board. I tried to give some of that help back in terms of advice to newbies. My ex and I are in the middle of a contentious divorce. I made friends with Julie Yip and others that are gone. You guys helped me so much, my ex was diagnosed three weeks after our second child was born, and I spent hours and hours on these boards finding tips for his treatment that were so helpful.

I will ask for one last favor. I am running a marathon, and I wanted to raise money for colorectal cancer. Anyone know the easiest way to do that independently?
Husband (Age 36) 1/13 Dx Stage 3B rectal cancer
3/13 Chemoradiation
6/13 Tumor removed, Temp ileo, 1/15 nodes
7/13 Chemo = Oxaliplatin, Xeloda
1/14 Reversal
7/14 NED, CEA 1.8
12/14 CLEAR CT scan! NED

http://kickingasscancer.com/

stu
Posts: 819
Joined: Sat Aug 17, 2013 5:46 pm

Re: Reflections on caregiving

Postby stu » Tue Sep 11, 2018 1:46 am

Can’t answer your question but you have certainly been through a lot of difficult situations and I am sad that you are facing a difficult divorce. Great that even in those circumstances you are thinking of others . Enjoy your marathon. You are incredibly strong .
Stu
supporter to my mum who lives a great life despite a difficult diagnosis
stage4 2009 significant spread to liver
2010 colon /liver resection
chemo following recurrence
73% of liver removed
enjoying life treatment free
2016 lung resection
Oct 2017 nice clear scan . Two lung nodules disappeared

hiker
Posts: 41
Joined: Thu Aug 09, 2018 10:15 am

Re: Reflections on caregiving

Postby hiker » Tue Sep 11, 2018 1:24 pm

Hey kirac,

Very sorry to hear about the divorce.

I've never been involved with a fundraiser, but there are resources out there to help. I'm treated at MSK and their website has a very nice section on fundraising, see below (please note that I am only posting this to provide you with an example and am in no way suggesting you should raise money for MSK):

https://giving.mskcc.org/ways-to-fundraise

I'm sure other hospitals/research centers/etc. have similar information.

hiker
Colonoscopy 2/17, 5cm tumor descending
Diagnosed stage iv, liver mets 3/17
Colon resection 3/17
Told surgery not an option, get my affairs in order
Meet w/MSK team 5/01/17
Folfox(3rds) 5/17-6/17
Liver resection/implant HAI pump 7/17
HAI pump chemo(5rds) 8/17-2/18
Folfiri+Vectibix(11rds) 8/17-2/18
Spot on chest CT 10/17
Lung biopsy (that was fun) 11/17
Nocardia bacterial infection w/spread to brain (this is serious) 11/17
IV antibiotics 12/17-2/18
Oral antibiotics 3/18-present
Clear of cancer since surgery

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kirac
Posts: 255
Joined: Sun Jun 09, 2013 10:34 pm

Re: Reflections on caregiving

Postby kirac » Tue Sep 11, 2018 3:35 pm

Thanks! MSK is a good one. I just am trying to figure out how to attach myself to a legit one and fundraise. Gives me ideas.

This board is always hard and inspiring at the same time. So sad about Bev too. She was always so helpful.
Husband (Age 36) 1/13 Dx Stage 3B rectal cancer
3/13 Chemoradiation
6/13 Tumor removed, Temp ileo, 1/15 nodes
7/13 Chemo = Oxaliplatin, Xeloda
1/14 Reversal
7/14 NED, CEA 1.8
12/14 CLEAR CT scan! NED

http://kickingasscancer.com/

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O Stoma Mia
Posts: 1426
Joined: Sat Jun 22, 2013 6:29 am
Location: Traveling abroad:

Re: Reflections on caregiving

Postby O Stoma Mia » Wed Sep 12, 2018 3:10 am

kirac wrote:...I will ask for one last favor. I am running a marathon, and I wanted to raise money for colorectal cancer. Anyone know the easiest way to do that independently?

Hi Kirac - Thanks for checking in. It has been over a year since we heard from you last. But I'm sorry to hear about your divorce. That's a real bummer.

How are Kiki and Kepler doing? I hope they're OK. Kiki must be almost 8 years old by now. Does she still have the same opinion about Bok Choy as she had before?

Here are some more links for fundraising in the cancer context. The first one focuses only on colon cancer. The others are for fundraising for all kinds of cancers. I don't know much at all about fundraising, so I can't give you any specific recommendations. You mentioned that you wanted to do fundraising "independently". Does that mean that you don't want to be affiliated with any particular organization? I'm not sure what you mean by "independently".

Get Your Rear in Gear Run/Walk (CCC) - Fundraising
https://coloncancercoalition.org/events/fundraising/

Relay for Life (ACS) - Fundraising
https://secure.acsevents.org/site/SPageServer/?pagename=relay_find_event&join=true

FightCRC.org
https://give.fightcrc.org/give/f772327/#!/donation/checkout
Last edited by O Stoma Mia on Wed Sep 12, 2018 6:01 pm, edited 1 time in total.

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kirac
Posts: 255
Joined: Sun Jun 09, 2013 10:34 pm

Re: Reflections on caregiving

Postby kirac » Wed Sep 12, 2018 1:24 pm

Wow. You have an excellent memory. Kiki just celebrated her 8th birthday. I check in on the boards but rarely post anymore. After Julie passed, I stopped checking all together. I am still on FB groups and am friends with some of the people in active treatment so I still see that. Our company is helping launch a cancer drink alternative to Boost and Ensure called Reason. So maybe that will help people.

Kepler dislikes his greens except brussel sprouts. Kiki asks for kale, spinach, anything green. She's unusual ;p.

By independent, I just mean that I'm already running a marathon on December so I want to set up a page independently and raise funds for cancer. Likely where Wil was treated or colorectal cancer so the page you sent me is very helpful. https://coloncancercoalition.org/donate ... ndraising/

O Stoma Mia - Thank you. You are always so helpful and an active presence on this board.
Husband (Age 36) 1/13 Dx Stage 3B rectal cancer
3/13 Chemoradiation
6/13 Tumor removed, Temp ileo, 1/15 nodes
7/13 Chemo = Oxaliplatin, Xeloda
1/14 Reversal
7/14 NED, CEA 1.8
12/14 CLEAR CT scan! NED

http://kickingasscancer.com/


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