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by surfingon
Tue Aug 09, 2016 5:07 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Very swollen legs and abdomen - any idea?
Replies: 25
Views: 3645

Re: Very swollen legs and abdomen - any idea?

That PM I sent yesterday has completely disappeared. Complete mystery. Clearly much has transpired since yesterday, so the info I sent is probably less helpful now. My conjecture was that his swelling may have been caused by a tumor/tumors blocking his portal vein in his liver. My husband's interven...
by surfingon
Mon Aug 08, 2016 3:58 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Very swollen legs and abdomen - any idea?
Replies: 25
Views: 3645

Re: Very swollen legs and abdomen - any idea?

So sad to hear that many doctors still do not understand the possible causes of this kind of swelling. Sent you a PM.

May your brother be free from suffering,
Rachel
by surfingon
Wed Mar 16, 2016 10:14 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Something hospice did is bugging me
Replies: 9
Views: 2307

Re: Something hospice did is bugging me

As a 30 year hospice veteran: this is utterly, mind-numbingly unacceptable behavior on the part of the aide. Your husband's reaction is both natural and understandable and it should have elicited great compassion, not a power trip. This is completely antithetical to the whole raison d'etre of hospic...
by surfingon
Tue Mar 08, 2016 1:55 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Now that he's dying, doctors don't want to help!
Replies: 12
Views: 2153

Re: Now that he's dying, doctors don't want to help!

Strongly suggest that you ask for a referral to the palliative care team. Our experience was that we had to ask/demand a palliative consult; it was not a concept that seemed to be part of my husband's oncologist's toolkit. Palliative care focuses on optimizing the patient's quality of life, using a ...
by surfingon
Mon Feb 15, 2016 4:26 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Need advice transitioning to hospice
Replies: 17
Views: 2904

Re: Need advice transitioning to hospice

Dear Lund, I wrote this blog entry precisely for patients like you with questions like this: https://sheddinglightonthecancerjourney.wordpress.com/2010/01/24/how-to-choose-a-really-good-hospice-part-ii/ It is really important to understand that not all hospices are the same. If you don't feel comfor...
by surfingon
Wed Aug 19, 2015 4:41 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Goodbye, my love.
Replies: 45
Views: 8973

Re: Goodbye, my love.

Dear Julia,

I mourn your loss. Beautiful obituary. How many of us will be able to say when our time comes that we knew our purpose for this incarnation and that it was fulfilled?

Sent you a PM.

Blessings during this difficult time of becoming,
Rachel
by surfingon
Mon Aug 03, 2015 3:01 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Advice for hospice
Replies: 5
Views: 1894

Re: Advice for hospice

As a 28-year hospice volunteer and trainer of new volunteers, I can tell you that Julia hit on one of the most crucial points about hospice care: not all hospices are the same. There are some very good ones and some really poor ones. You might want to check out my blog post on how to choose a really...
by surfingon
Wed Jul 29, 2015 7:00 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: How to Bring a piece of heaven to hell...?
Replies: 7
Views: 2272

Re: How to Bring a piece of heaven to hell...?

My heart goes out to you as a wife who has been through this. My sense is that at this point in your journey, perhaps the greatest gift you can offer your husband is not what you do, but how you are. There is not a whole lot that you can do on the physical plane. My sole "doing" suggestion...
by surfingon
Sat Jul 18, 2015 2:46 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Tumors pressing on hepatic vein
Replies: 3
Views: 1560

Re: Tumors pressing on hepatic vein

My dear fellow colon cancer wife, My husband was in the same situation, presumed tumors (they couldn't be imaged without causing more damage) pressing on his hepatic artery, grossly swollen feet and legs. At this point, there is little to be done medically. The disease is progressing, relentlessly. ...
by surfingon
Tue Jul 14, 2015 3:42 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: End of life question about bilirubin
Replies: 22
Views: 5853

Re: End of life question about bilirubin

Dear Julia, My husband had a severely compromised liver at the end, so I did a lot of research on how that might play out for him.. CR Guy covered the explanation very concisely. Delirium is one of the common manifestations of hepatic insufficiency. It may not even happen to your husband in his part...
by surfingon
Wed Mar 25, 2015 11:22 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Death with Dignity Law in Hawaii?
Replies: 10
Views: 1736

Re: Death with Dignity Law in Hawaii?

I'm in Hawaii, have been a volunteer for 29 years with one of the most spiritual/contemplative care hospices in the country and I happen to know a lot about this subject. Death and dying is something I think about/meditate upon every day, and I am a voracious reader on the subject, with 3 books on t...
by surfingon
Thu Jan 22, 2015 10:03 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: great article on cancer words
Replies: 3
Views: 1038

great article on cancer words

I haven't been around for a while, but when I read this article in The New York Times, knew immediately that it would resonate with my fellow CC'ers:
http://well.blogs.nytimes.com/2015/01/22/living-with-cancer-coming-to-terms/?_r=0

Best to all,
Rachel
by surfingon
Mon Aug 04, 2014 4:47 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: A quick question about hospice live in physilities (NY/NJ)
Replies: 11
Views: 1825

Re: A quick question about hospice live in physilities (NY/N

Dear Alan, My heart is aching for you and these unthinkable challenges facing you at a time when your emotional and physical resources are so depleted. Life just seems so unfair sometimes. A good hospice can go a long ways towards making both your physical body comfortable and helping you to come to...
by surfingon
Wed Jan 08, 2014 4:20 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: never trust a trouser cough
Replies: 1
Views: 848

never trust a trouser cough

Who better to share this with than my CC friends? Over 6 million hits...
https://www.youtube.com/watch?v=9WoM2bHfr48

LMAO,
Rachel

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