Websites

Updated 5/17

These are sites I have come across during my many, many nights of searching the internet. I know they are just the tip of iceberg and there are many more that might be helpful. If you choose to look at any of these, consider them just a starting point. The internet changes so fast that what is a good site today may be a lousy one tomorrow. Please, if you have something I haven’t mentioned here, found it helpful and would like to share, consider leaving it in the comment section for others to use.

I can’t guarantee any of the information in these sites, but hope you find something useful. And here’s the legal part:  Through this website you are able to link to other websites which are not under my control. I have no control over the nature, content and availability of those sites. I cannot guarantee the suitability of any information or product found in these links. The inclusion of any link does not imply a recommendation or endorse any products or views expressed within them. 

 

There are three websites I have used extensively to find books, CDs and DVDs. They are http://www.amazon.comhttp://www.soundstrue.com, and www.powells.com. But my library has been an enormous help to me also; they have so many titles on cancer and healing.

CANCER

This is a new (12/16) article by a woman who was diagnosed with pancreatic cancer. It explains how she went about it, how she sought treatments: http://www.prevention.com/health/this-is-what-its-like-to-live-with-pancreatic-cancer. Her website is http://www.letswinpc.org

These are simply my favorites. Some are associated with hospitals like M.D. Anderson, some with groups like the American Cancer Society or Susan G. Komen, The Mayo Clinic, etc.

www.pancan.org  This site is specifically for pancreatic cancer.   They are an advocacy group whose motto is “advance research, support patients, create hope.” Lots of good information here but I think their best feature is PALS, which is just a phone call away. They will talk to you one on one, you are able to keep the same PALS associate each time you call, and the organization keeps abreast of new clinical trials. One of those associates can help you locate a trial, if that’s what you want. They also have periodic video conferences – on topics about pancreatic cancer such as immune therapy – that you can view for free. They have recently (1/15) added personalized clinical trial searches called Know Your Tumor (https://www.pancan.org/section-facing-pancreatic-cancer/know-your-tumor/?utm_campaign=ctam-kyt-2015&utm_medium=email&utm_source=intro-email). They can also be reached by phone 7am to 5 pm pacific time at 877-272-6226.

http://www.mayoclinic.org/diseases-conditions/pancreatic-cancer/multimedia/whipple-procedure/img-20008531  This site gives a pretty good explanation of the Whipple operation.

There is a very interesting set of videos on YouTube by Mark Fraiman, M.D. working out of St. Joseph’s Hospital in Maryland. It’s rather dry, but gave me good information. The link is about survival rates. However, enter his name, Dr. Mark Fraiman, into the search function and you will find several very clear videos about pancreatic cancer surgery: http://www.youtube.com/watch?v=DbgJDRs9C-Q. Can be graphic.

cancercompass.com  This site is for all cancers, but you can choose a particular one and read up on it. They have a message board and this is where I always ended up. The people there seem so supportive and kind.

And of course, The American Cancer Society: http://www.cancer.org/cancer/pancreaticcancer/index

This site really benefitted me when I was still considering surgery. I found great solace here and lots of good information about preparing for surgery: http://www.soulspringcounselling.com/surgery.htm.

For those of you interested in reading Randy Pausch’s blog on his journey with pancreatic cancer (as mentioned in How I Made My Decision): http://www.cs.cmu.edu/~pausch/news/index.html

www.healingjourneys.org. This group was begun by Jan Adrian not too long after her own cancer diagnosis (she’s had three). It’s been going 20 years now and Ms. Adrian is still there. They give wonderful workshops, but unfortunately I don’t think they ever leave the west coast (they’re a small group, existing entirely on donations). So for you out there who live in the west, you might have an opportunity to visit one or at least sign up for their emails. The workshop they held in my city in the midst of my diagnosis was a lifesaver for me, inspiring, informative and supportive to be with all these people who were going through what I’m going through. Bought my favorite T-shirt there. It says “Oh no, another learning experience.” They also have a YouTube channel where you can access many of the talks from their Healing Journeys conferences. Begin at this link and then look to the right hand side; you can click on other talks:  https://www.youtube.com/watch?v=JbRQSCE99HU

A friend just sent me to this site:  http://www.integrativecanceranswers.com.  Boy, lots of good stuff here for the newly diagnosed, through treatment and afterwards. Enormous amount of info on using complimentary therapies.

There seem to be a lot of MDs writing right now about their own journies with cancer. Healing Journeys thinks very highly of Dr. Jeremy Geffen so I went to his blog. I love his very frank discussion of his own experience with chemo. You will find some interesting thoughts and strategies on cancer here: http://www.jeremygeffenblog.com.

Postscript: D. Geffen died in 2015. There is a beautiful piece of writing he did, called To Die While Living, that is in the last post, on the one year anniversary of his death. It is well worth reading.

MEDITATION

My favorite guide to the spirit of meditation is Adyashanti, a Zen Buddhist teacher. And he’s got great guided meditations that lead to me absolute, complete stillness. But all his meditations (as far as I know) are in the middle of teachings, so you have to buy the whole CD set to get to the meditations. Listening to him is wonderful, but if you’re after something a little quicker, a problem-focused meditation is probably a better bet. The ones that follow are focused on specific problems.

http://www.jackkornfield.com/ I think he’s a great teacher. When I needed a guide through meditation this is the CD I used:  “Meditation for Beginners”. It is an excellent starting place. You can find his CDs on his website, on Amazon, Sounds True or other online sellers, bookstores or possibly your library. There are so many other people who do wonderful meditation training.  I have also used:

Pema Chodren, http://www.pemachodrontapes.com/ and closest to my heart:

Stephen Levine http://levinetalks.com/Shop. He has many different tapes but my favorite meditation is “Soft Belly Meditation”. Levine’s whole adult life has been devoted to help the dying die peacefully and calmly. So he knows the territory.

This meditation on forgiveness is by Jack Kornfield, a master teacher of meditation. Though I’d rather link you to free stuff, this is reasonably priced at $2.99 and will give you great help if you are having trouble with forgiveness. Check out the reviews to see if it’s what you’re hoping for.
http://www.soundstrue.com/shop/Forgiveness-Meditation/3300.pd

This list may seem Buddhist oriented but there’s plenty of places that approach it from a Christian perspective (and probably all other religions if you look).  If that’s more comfortable for you, here’s a place to start: the World Community for Christian Meditation:http://www.wccm-usa.org/ As I understand it, they teach the early church tradition of meditation.

Also in the Christian tradition, Father Keating’s training in Centering Prayer. I love Centering Prayer. There are lots of resources available but here’s the site I found my first information on:  http://www.centeringprayer.com

Father Richard Rohr has saved my bacon any number of times with his daily emails. I highly recommend his site; he considers meditation and contemplation to be the same thing: I think he’s right. He has a number of ways to help you practice. Go to the Richard Rohr heading and the pull down menu will list “meditations.” https://cac.org.

CANCER AND REMISSION

Kelly Turner is a PhD who is researching cancer remissions. Her website is www.kellyturner.com. Also she is publishing a book titled Against All Odds. I haven’t been able to locate it on Amazon, so I think it’s not been published yet (August 2013). Update: 2014. Her book is out and is titled Radical Remission: Surviving Cancer Against All Odds. 

Dr. Jeffrey Rediger has a blog very worth reading. He is an M.D. (and Doctor of Divinity) who is giving an enormous amount of his time to search out people in remission, with the hope that he can find a key to healing. His site is uplifting and powerful – http://www.medicineofhopeandpossibility.com

FACING DEATH

I really liked this guidance from a Christian source:  http://www.gotquestions.org/fear-death-scared-dying.html

I just love this site. A sweet take on how not to fear death:  http://www.gentle-stress-relief.com/fear-of-death.html

This is a lovely, helpful site that the Catholic Church has made available on the web. It’s aim seems to be help for those facing death, those coping with someone else’s death, those caring for the dying. I am not Catholic, but I found a lot of kind wisdom there. The website is:

http://www.artofdyingwell.org

A short take from a man who finally got his life together and then got a terminal diagnosis two days later. It’s a good read:https://www.theguardian.com/commentisfree/2016/nov/26/cancer-diagnosis-existential-life-accomplishments-meaning?CMP=oth_b-aplnews_d-1

GRIEF

Not exactly a website, this is a podcast called Terrible, Thanks for Asking with Nora McInerny. She describes it as a “funny/sad/uncomfortable podcast about talking honestly about our pain, our awkwardness, and our humanness, which is not an actual word.” It is indeed honest in a way that most of us will be able to handle, a story of others grief, what it is like for them, how they cope, a little humor here and there. If you’re like me, just listening to someone else discuss the same things I’m going through can get me through the day.

Go to https://www.apmpodcasts.org/ttfa/

COPING WITH ANXIETY

Sweet little website that will give you a hand:  http://www.anxietyslayer.com

GRATITUDE

http://www.help-yourself-stress-relief.com/gratitude-prayer.html

Also, I would recommend Iyanla Vanzant’s CD Giving Thanks. It is a gentle guide with meditations to help you recover and discover your gratitude. It can be found at http://www.soundstrue.com/shop/Giving-Thanks/217.pd or at Amazon.

EMOTIONAL AND SPIRITUAL HEALING

Dr. Emmett Miller: http://drmiller.com/ Just listening to his voice is healing for me. I have found his CDs to be extremely effective. Also on his website are many different conversations with other people in the healing field, focused on specific topics. When I needed to better manage my stress level, his CD “Letting Go of Stress” got me through. Again, you can find his CDs on his website, on Amazon or other online sellers, bookstores or possibly your library.

This lady does the most amazing scripts to lead you through the dark forests of fear and disease:  Belleruth Narparstek: http://www.belleruthnaparstek.com/. I used one of her scripts to make a tape for a friend who had breast cancer. She said she listened to it over and over during those moments when she felt crushed by her disease. Good stuff.

SUPPORT FOR SURGERY OR CHEMOTHERAPY/RADIATION TREATMENTS

There are A LOT of these around. I just typed in “CDs for Surgery” at Amazon and quite a few came up. The company I have found most helpful personally over many years (not just for disease) is Hemi Sync: http://www.hemi-sync.com. They have a CD set called The Surgical Support Series. One of these is meant to be played in the OR during surgery. When I was still contemplating surgery, I had begun the conversation of coordinating with my surgeon how to play this during surgery and post surgery. They had plenty of experience with it from other people who had used such CDs, so I guess a lot of people do this – it doesn’t appear to be a radical idea anymore.https://www.theguardian.com/society/2016/oct/27/chronic-pain-learning-to-cope-remedies-health?CMP=oth_b-aplnews_d-1I

PAIN MANAGEMENT

https://www.theguardian.com/society/2016/oct/27/chronic-pain-learning-to-cope-remedies-health?CMP=oth_b-aplnews_d-1I. This is a wonderful story from a woman who is managing pain on a daily basis, years into her condition. You will not feel alone after you read this and you will have picked up coping tricks.

http://www.theisonmethod.com/Meet_David_Ison.html

http://www.soundstrue.com/shop/Mindfulness-Meditation-for-Pain-Relief/2112.pd

Techniques that will help you cope: http://www.thealternativedaily.com/how-to-ease-pain-by-controlling-your-mind/

TO HELP STAY IN TOUCH WITH THOSE HOSPITALIZED 

http://www.caringbridge.org

https://www.carepages.com

FINDING MONEY RESOURCES FOR THE PERSON WITH CANCER

http://blog.standbuy.us is a fundraising site for cancer patients. I haven’t known anyone who used it, but I think you might find it a very helpful tool if the bills are overwhelming. It’s basically a fundraising site. Others helping you through it. And then, maybe, you can help someone else.

http://www.giveforward.com/p/help-for-cancer-patients

http://www.thesamfund.org. This is a helping hand for young adults battling cancer.

WHERE TO FIND HELP

http://www.cancercare.org

http://www.cancersupportcommunity.org

http://sharethecare.org  This site will help you connect and find resources as a care giver.

HOW TO FIND A SUPPORT GROUP

http://www.aacr.org/home/survivors–advocates/

I have found this organization incredibly helpful. I know it’s had bad publicity because of Lance Armstrong, but I think the organization itself is wonderful:    http://www.livestrong.org

FOR TERMINAL ILLNESS IN GENERAL

http://www.parents.com/toddlers-preschoolers/development/social/talking-to-kids-about-death/http://www.nhs.uk/Planners/end-of-life-care/Pages/coping-with-a-terminal-illness.aspx

http://www.mayoclinic.com/health/grief/CA00041

THOUGHTS ON HOW TO HELP CHILDREN THROUGH THIS WHEN A PARENT OR LOVED ONE HAS CANCER OR IS FACING DEATH

There are many sites online, some better than others. I suggest googling something like “talking with children about cancer.” This will bring up many, many sites. You can also be more specific, for example “talking with a 7 year old about death.” There’s help out there.

http://www.cancer.org/acs/groups/cid/documents/webcontent/002599-pdf.pdf http://www.cancer.org/treatment/childrenandcancer

http://www.hospicenet.org/html/talking.html. Good support here and sensible advice.

http://www.parents.com/toddlers-preschoolers/development/social/talking-to-kids-about-death/  Questions and answers for different situations that may shed light on your situation.

Heart2Soul.com. Wonderful site for simple, direct advice. See the post in this blog under Facing Death, titled How Do You Tell Your Children?

GREAT SITE FOR FINDING OTHER SITES

http://www.findingdulcinea.com/guides/Health/Terminal-Illness.pg_00.html

A BRIEF AND EASY READ FOR FINDING YOUR FOOTING AFTER THIS DIAGNOSIS

http://www.nhs.uk/Planners/end-of-life-care/Pages/coping-with-a-terminal-illness.aspx

HOW TO FIND THE WORDS YOU NEED, HOW TO KNOW WHAT TO SAY TO SOMEONE WITH A TERMINAL ILLNESS

https://www.caring.com/articles/how-to-say-goodbye. This is a lovely site for information on aging. But I found this article especially helpful. Too often, friends don’t visit the dying because they have no idea what to say or do. If you find yourself or someone you know facing such a situation, this article will give you enormous help. On the same website is an article titled The Four Biggest Myths About How to Act Around Someone Who is Dying. It is full of wisdom. You can access it at: https:///www.caring.com/articles/dealing-with-death

http://www.beliefnet.com/Love-Family/2003/07/But-I-Dont-Know-What-To-Say.aspx#

http://articles.latimes.com/2013/apr/07/opinion/la-oe-0407-silk-ring-theory-20130407 This link is to the LA Times. I was hoping to find a link that didn’t have ads and was maybe a tiny bit bigger, but couldn’t find one. Knockout information about how to know what to say, when to say it and who to say it to.

LEARNING TO EAT AND LIVE ORGANICALLY 

I am a fan of this lady:  http://foodbabe.com. She has a lot of information, but I especially value her section on how to eat organically without breaking the budget.

This site is helpful for learning how to change to an organic lifestyle in an approachable and easily doable way:  http://www.kitchenstewardship.com

Resources

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