1

(6 replies, posted in General Discussion)

Hi Tiah,

Just another message to you to echoing everyone's words. Take your time and remember that you are allowed to be sad/mad/indifferent... Having all those feelings of nervousness is completely normal. I hope you find some peace when you go back to work and when at home. I hope those beautiful memories of your mother give you comfort and help you along this new journey in life.

Sending you many positive thoughts and prayers,

Lourdes

Hi Julie,
Your post reminded me of some of the patients I see where I work, and the RNs will use Hypafix tape (which is the cloth tape)...although you may have already tried this.

I did a search for Hypafix alternatives and came across this site: http://oley.org/?page=tapeforsensitiveskin

Not sure if it will be helpful or not?

Wishing you all the best,
Lourdes

3

(3 replies, posted in General Discussion)

Just as a follow up/clarification, Carmen also says:

"Efectivamente esta acumulando liquido que después escupe, el color es blanco transparente, no tiene síntomas solo la molestia, si esta consumiendo alimentos, todo sancochado y natural."

He is acumulating liquid that he spits out after. It is transparent in color. He doesn't have any symptoms, just discomfort. He is eating food, everything natural and boiled.



Thanks Lainy, I will pass that along to her.

Lourdes

4

(3 replies, posted in General Discussion)

Hello everyone,
I am assisting someone who speaks primarily Spanish in getting information. I am posting her question in Spanish/English on the forum in case anyone has any suggestions. I will translate and send back to her. Please post responses in English or Spanish, whatever language is easiest for you.

Thanks!

From Carmen:

Tengo una consulta para el foro, mi paciente esta teniendo mucha saliva acida y no la pasa sino la escupe, hay alguna manera de poder controlarlo y ayuda.
gracias
Carmen


I have a question for the forum, my patient is having a lot of acidic saliva, and he doesn't swallow, rather he spits it out. Is there a way to help control it and help with this?
Thank you.
Carmen

For those of you who use meditation as a way to help you through daily living (in an effort to get through many obstacles after my father's death, I have finally turned to mindfulness therapy), I am posting this video link.

I hope some of you find it helpful:

https://youtu.be/lw8VgqHL8_8

For caregivers,
I recently read an article that discussed ways of taking a break, and although the article wasn't as relevant to taking breaks when in a state of uncertainty (as most of us are/have been during this journey with CCA), I thought the image that was placed in the article may be helpful. I hope that you can see it okay and maybe provide some ideas on taking a brief break to help you recharge.


https://s28.postimg.org/pbaykact5/2012-06-27-50waystotakeabreaksmallweb55.jpg

Hi all,
I was searching for more of this information in Spanish language, and unfortunately could not find this direct link translated.

However, I did find this page from the American Cancer Society in Spanish, which hopefully is helpful.

____

Estaba buscando el link sobre información en español sobre la nutrición durante tratamiento, pero desafortunadamente no lo encontré. Si encontré esta pagina del la Sociedad Americana del Cancer que habla sobre la nutrición, y esta traducida en español para los que desean esta información en español.

https://www.cancer.org/es/tratamiento/s … iento.html

8

(2 replies, posted in New Developments)

Thank you for sharing this!

9

(11 replies, posted in Introductions!)

Just providing a link to an article that was published on veteran's day of last year in order to bring further awareness on where this link to Vietnam veterans is today: http://bigstory.ap.org/article/2475c351 … are-cancer

You can absolutely find more information through the above facebook link connecting to Anne Petitti.

10

(3 replies, posted in General Discussion)

Marion,
Thanks so much for posting this! The link is definitely a wealth of key points, that address so many aspects of being a caregiver, and the sub-roles or within the larger Caregiver role.

As I was reading this, I was mentally doing a checklist of all the things I remember doing, and then again what my mother did as her role as well. What just stuck in my mind was the section on the role of Communicator, and how it's important to communicate with the medical team, but again how cultural differences may impact the way information may actually be communicated.

It made me remember when we had our first palliative team meeting, and my dad, although given pain medications where he wasn't fully awake, was able to look at me when he noticed I was getting annoyed with the team of individuals, and shook his head to tell me not to argue. I know that part of this response was the way of thinking, that if you don't respect them (the medical team), he wouldn't get the treatment that was necessary, or would be treated in a less than positive way. I think just this piece is so cultural as sometimes in certain cultures we see the medical team as the utmost source of information and knowledge. I think it's so important to remember as caregivers, that we too have so much knowledge about our loved ones, and we have put so much effort into staying up to date on the most recent research, that we too have a lot of knowledge about the disease.

Sorry, off my soap box now, it's just the point to stuck with me the most while I read.

I do hope others read and discuss further as in a way, I truly do believe, once a caregiver, always a caregiver. Our perspectives change, for the better, in my opinion.

Hello to all Caregivers ~

So I am not sure if this is the most appropriate place to post this but I recently went to a Mindfulness retreat for work purposes to aid in helping us in the field to become aware of various emotions that may come up due to being a caregiver. Although it was work related, I truly believe that this can be helpful to those of you who are taking care of your loved one day in and out through this journey in Cholangiocarcinoma. 

From first hand caregiver experience with my father, I think that it's important to make sure that our caregivers know that you are cared for.  I have been doing some searches and came across some non research articles that I thought I'd share.

Although a couple of years old and the focus is on caregiving those with dementia, this link is a good read, in my opinion, on mindfulness for the caregivers out there: http://www.mindful.org/when-caregivers-need-healing/

As a summary from the article, just remember:

"Be where you are
- It’s a central principle of mindfulness: trying to do one thing at a time, and knowing that you’re doing it, and doing it with kindness toward yourself.
-make a list of activities that nourish you, and try to build one or more of these into your days: journaling, say, or taking walks outside, calling a supportive friend, taking some time to do yoga, meditating—whatever helps you come back to yourself and the moment you’re in.
"Be gently aware of loss and change
-Caregivers often experience long (or short)-term uncertainty—and this can be very stressful.
"Meet your family member where he or she is
"Seek out support. Ask for help. Share your story.
-Caregiving is isolating; it usually happens in private homes, behind closed doors. Yet connection is vital to us as human beings.
"Be kind but don’t try to be a saint
-Being kind doesn’t always mean feeling kind. It does mean doing the right thing in a particular moment. Of course, trying to feel compassion, having that as an intention, is good—but of course one isn’t going to feel compassion in every moment.

Again, some things apply more than others. I hope that you find a way to take care of you during this time with your loved one.

Many hugs to you all
~ Lourdes

12

(15 replies, posted in Introductions!)

Hi Vallerina,
I usually am not on the boards but happened to come across your post and it struck a cord in me. First I want to agree with what others have said, you will be inundated with information. I want to highly suggest you use a tape recorder, or digital recorder when you go to the doctor appointments. That also may help your dad process all the information and make the decision that is right for him.

As a caregiver you will want to do all you can for your dad. Remember to try to take time for you to process, and breathe.

Sending you many positive thoughts for this journey.

Lourdes

Not sure if this is the place to post, but in case anyone is interested there is a patient and family-centered care conference in July in New York City. If anyone attends, would love to hear about any insight you may have gained.

Here's the link for it: http://www.ipfcc.org/events/conference.html

Lourdes

14

(3 replies, posted in Events & Fundraising)

Hello again -
It's been a long time since I come to the discussion boards, but I had a suggestion that maybe someone from the organization may want to try, unless it has already been done.

I'm not sure how many of you know about the Alex and Ani bracelets (I only found out about them as they were a gift to me). What I learned today was that this company supports certain charities and gives a percentage of sales of certain bracelets to designated charities. I saw that they have a form to begin the request process: http://www.alexandani.com/charity-by-design

Also, it seems that they choose the charm if it somehow connected, and I saw that they have a Tree of Life charm; which I found to be representative of the CCA community.

Anyways, this was just a thought.

Wishing you all a beautiful rest of your week, and of course only positive thinking for everyone affected by this.

Hugs,
Lourdes

15

(0 replies, posted in Members' Cafe)

Hello all,
I'm not sure where to post this, but I know of a group in California that creates comfort packages for individuals affected by cancer. I am not promoting any religious affiliation, but know that they do this in a positive way, really just trying to send comfort through blankets and crochet hats.

If anyone is interested in requesting a comfort package, this is their link: http://yana-cancercomfort.com/

I'm sure there are other groups out there that may offer the same thing, but this was just one that I know of through a friend.

Many positive thoughts for all,
Lourdes

Hello Marion,
I just came across this and thought that I would love to volunteer in some way, but I just don't know in what capacity. Please keep me in mind if you need help with things.

~ Lourdes

17

(11 replies, posted in Grief Management)

I just read your poem and it was really beautiful. I haven't been around the site for a while and have been missing my dad tremendously recently. Wishing everyone much peace and love in this month of awareness.

~ Lourdes

Thank you so much for sharing this. I save all this info...it's makes me glad when there is research going on especially related to liver flukes (my dad was in Vietnam).

And being from CA with all the things you hear about fish...I pointed it out once at a store when some fish sold there was from Japan after earthquake/tsunami...they said it was ok but shortly after never seen again ~

19

(6 replies, posted in Members' Cafe)

Thanks for the recommendations. I have yet to see Lincoln, but it looks good.

Brave was one I did see and I thought it was a really good movie smile

Hello Chelsea,
First of all, I am sending out positive thoughts to you and your mom. In case you wanted a little more information on what Marion had mentioned (chemoembolization) here is a link to a post I had placed a while back: http://www.cholangiocarcinoma.org/punbb … 449#p48449

I hope your mom has a wonderful time in Hawaii smile

~ Lourdes

21

(6 replies, posted in Members' Cafe)

Hello all ~
I just wanted to post something completely non-related since I am watching the Academy Awards tonight, and since I've been a little disconnected, have only really watched maybe 2 or 3 movies at the theaters.

Are there any favorite movies from this past year? what made them so memorable for you?

~ Lourdes

22

(1 replies, posted in Members' Cafe)

Is it terrible that it's the first thing that comes to mind? I wondered that same thing about Jerry Buss...

23

(1 replies, posted in Members' Cafe)

Hello everyone ~ I wasn't sure where to post this, but I was wondering if there was going to be anything special happening for February and CC Month?

Wishing everyone a wonderful week,

~ Lourdes

24

(5 replies, posted in Events & Fundraising)

Thank your responses...I will email Laurie and see if I can obtain any...I will also send a little more info about the event.

It was nice to stop in again and read some of the updates.

Take care,
Lourdes

25

(5 replies, posted in Events & Fundraising)

I was just wondering if there is a way to order some of the brochures.

There is going to be a Quarter Auction event near me that my sister will attend in attempt to sell the 31 products and bring in more money for the foundation. Since every commission that is received in the sales is going to the foundation (so far $100 and some brought in) we thought it would be a great way to give brochures to folks and let them know about Cholangiocarcinoma and the cause.

I noticed you can download, but I don't have a color printer...so I would absolutely not have a problem purchasing if that's possible. (or if you can tell me how to direct Kinko's people to print the brochures as I'm not that savvy with it).

Thanks!
Lourdes