Previous Thread
Next Thread
Print Thread
Page 1 of 2 1 2
#84276 11-16-2008 09:26 AM
Joined: Mar 2008
Posts: 3,082
Patient Advocate (old timer, 2000 posts)
OP Offline
Patient Advocate (old timer, 2000 posts)

Joined: Mar 2008
Posts: 3,082
Before I found OCF, and immediately after DX, I was intrigued by the web sites for a Cancer Retreat Center in Hawaii named Kokolulu. I had planned on going there primarily because the lead speaker is Dr. Jeanne Achterberg, whose work on Imagery in Healing really spoke to me. For various reasons, including cost, I ended up not going. The basic premise was intriguing and sound: "Life after a serious diagnosis such as cancer will never again be the same ...Many patients say the return into life is more challenging than the diagnosis or treatment. They feel changed and don't know how to act upon the change. They feel abandoned by the health system and anxious about recurrence of the disease. The truth is, they have gone through an epiphany and have wisdom to share that would enrich the lives of anyone who listens carefully."
Just curious: has anyone on the OCF board done such a Cancer Retreat? If so, what was your experience.
For now OCF is my "virtual" cancer retreat.


65 yr Old Frack
Stage IV BOT T3N2M0 HPV 16+
2007:72GY IMRT(40) 8 ERBITUX No PEG
2008:CANCER BACK Salvage Surgery
25GY-CyberKnife(5) 3 Carboplatin
Apaghia /G button
2012: CANCER BACK -left tonsilar fossa
40GY-CyberKnife(5) 3 Carboplatin

Passed away 4-29-13
Joined: Nov 2005
Posts: 1,128
Patient Advocate (1000+ posts)
Offline
Patient Advocate (1000+ posts)

Joined: Nov 2005
Posts: 1,128
I sure don't feel abandoned by the health system -- Had I lived 100 years earlier, I would be dead several times over at earlier ages than I am today!

OCF is indeed a good retreat!


Age 67 1/2
Ventral Tongue SCC T2N0M0G1 10/05
Anterior Tongue SCC T2N0M0G2 6/08
Base of Tongue SCC T2N0M0G2 12/08
Three partial glossectomy (10/05,11/05,6/08), PEG, 37 XRT 66.6 Gy 1/06
Neck dissection, trach, PEG & forearm free flap (6/08)
Total glossectomy, trach, PEG & thigh free flap (12/08)
On August 21, 2010 at 9:20 am, Pete went off to play with the ratties in the sky.
Joined: Nov 2002
Posts: 3,552
Patient Advocate (old timer, 2000 posts)
Offline
Patient Advocate (old timer, 2000 posts)

Joined: Nov 2002
Posts: 3,552
A cancer retreat sounds like a great idea - an expansion of the cancer support group concept. I regularly go on spiritual retreats and find them to be generally very uplifting. Kaiser has lots of programs for post treatment wellness on many different levels.


Gary Allsebrook
***********************************
Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2
Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy)
________________________________________________________
"You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
Gary #92797 03-29-2009 11:33 PM
Joined: Mar 2008
Posts: 3,082
Patient Advocate (old timer, 2000 posts)
OP Offline
Patient Advocate (old timer, 2000 posts)

Joined: Mar 2008
Posts: 3,082
After the recurrence, I feel even more strongly about this OCF forum being a virtual cancer center retreat center for those of us who cannot afford to jet off to Hawaii for a week. I believe in and practice true "adjunctive" therapies: healthy food, exercise, martial arts, yoga, pilates, meditation, visualization, prayer, friendship and love. I want to be clear that I can not vouch for any cancer center retreat, but my understanding is the one I was thinking of is that they specialize in providing adjunctive therapy AFTER traditional radiation and chemotherapy and surgery .
I also recognize I am nowhere near being "charming" in my plain speaking on "alternative" adherents or "conspiracy" theorists, hence my sign on name indicating the goal is to be charming in the year 2017. There are about 5,000 members here who humor the few posters who advocate such potentially harmful ideas under the guise of "discussion". Those few can always dish it out, but never take it. Brian is a saint who always gives posters the benefit of the doubt, and moves topics to this forum that I would have deleted even when they link to quack web sites. Some Psychological studies posit that when erroneous ideas are posted and not clearly or memorably refuted, people tend to remember the erroneous idea instead of the gentle remonstrations. I try my best to be memorable. You can count on what you read here being vetted by caring posters and /or exposed. That is worth something. (Not so subtle hint that if you are a regular reader of this forum, don't forget to donate or join OCF with your tax refund. Can't help it, I worked for IRS 20 years so I know the system is set up to ensure a refund)


65 yr Old Frack
Stage IV BOT T3N2M0 HPV 16+
2007:72GY IMRT(40) 8 ERBITUX No PEG
2008:CANCER BACK Salvage Surgery
25GY-CyberKnife(5) 3 Carboplatin
Apaghia /G button
2012: CANCER BACK -left tonsilar fossa
40GY-CyberKnife(5) 3 Carboplatin

Passed away 4-29-13
Joined: Feb 2007
Posts: 1,940
"OCF across the pond"
Patient Advocate (1000+ posts)
Offline
"OCF across the pond"
Patient Advocate (1000+ posts)

Joined: Feb 2007
Posts: 1,940
While i applaud all genuine research being undertaken in to the causes and possible treatment of cancer,i did not come to this forum to find that sort of information.By the time i found OCF Rob already had the disease and had embarked on his treatment protocol.I came here to find out how I COULD HELP TO MANAGE HIS PROBLEMS.I also found an emotional support network i would not have thought existed.
I learnt about nutrition,drugs,creams,mouthwashes,dental products,rage,denial,rejection,love,prayers,FACTS about the disease that had taken over our lives.I researched the disease,i knew the worst case scenarios,i dreaded recurrence,and i listened and learned,sometimes the hard way.I fought for my husband using my medical training and the wisdom of Gary,Brian,Jam,Nelie,and many others.I shared my emotions with Margret,Bren,Helen,Petey,Donnarose,and dozens and dozens of people who i am proud to call my friends,and some who i mourn along with robin.

What i never looked for and NEVER WANTED was to read posts about the next miracle cure that might effect us in 25 years time,what i NEVER wanted was false hope,what i NEVER wanted was the lunatics set free from the asylum peddaling the latest miracle fruit juice that was going to cure his cancer.Thats not what i joined this forum for and in my very humble opinion there is no place for that here.I am sure theses quacks have there own forums where they will find poor suffering soles willing to grasp at any straw they can clutch.I would have tried most things to save him,but i am neither gullible or stupid,and i was able to recognise when conventional treatment had run its course and there was no more to be done for him.More to the point so did he,and he would not have thanked me for telling him about all the crazy stuff people say they can do with the power of herbs,faith,blood exchanges,and all the rest of it.These things have their place within the whole regime of conventional treatment,but dying people are very vulnerable and easy targets.

As for a cancer retreat?there i am in agreement,and if the person who has come through the TX feels that they need a place to rest,recharge there batteries,re-evaluate their new normal life,get counselling and consider their future i think thats a great idea.

Leave the news to the experts.Brian gives us all the information about research and treatments that we could possibly need and at least we know the source of this information is genuine and reliable.

from one charmer to another ..you keep on trucking fella and i if i dont like or agree with what you say i will let you know,but via PM where it keeps the crap off the boards.

love liz







Liz in the UK

Husband Robin aged 44 years Dx 8th Dec 2006 poorly differentiated SCC tongue with met to neck T1N2cM0 Surgery and Radiation.Finished TX April 2007
Recurrence June/07 died July 29th/07.

Never take your eye off the ball, it may just smack you in the mouth.
Joined: Jun 2007
Posts: 5,260
Patient Advocate (old timer, 2000 posts)
Offline
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 5,260
Who in the world has enough of those big green bucks to afford a retreat after paying for the cancer treatments , this includes meds and all the other things combined. I can relax around my family and friends without going into debt further. Actually, I am one very happy guy just to get out and enjoy people anytime and anywhere and soon it will be a garden and taking care of it. I just enjoy life in all forms.


Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
EzJim #92844 03-30-2009 01:42 PM
Joined: Feb 2007
Posts: 1,940
"OCF across the pond"
Patient Advocate (1000+ posts)
Offline
"OCF across the pond"
Patient Advocate (1000+ posts)

Joined: Feb 2007
Posts: 1,940
Thats brilliant Jim and the reason why everyone here loves you.I think for those less fortunate than you ,somewhere to escape and regroup may be helpful,but i have no strong opinions one way or the other.


Liz in the UK

Husband Robin aged 44 years Dx 8th Dec 2006 poorly differentiated SCC tongue with met to neck T1N2cM0 Surgery and Radiation.Finished TX April 2007
Recurrence June/07 died July 29th/07.

Never take your eye off the ball, it may just smack you in the mouth.
Joined: Mar 2008
Posts: 3,082
Patient Advocate (old timer, 2000 posts)
OP Offline
Patient Advocate (old timer, 2000 posts)

Joined: Mar 2008
Posts: 3,082
Liz

Considering how well our feelings and opinions mesh, I won't be holding my breath for that PM, but if ever happened, coming from you, I'd probably deserve it. One thing I treasure about OCF is that is a relatively delusional wishful thinking free forum , a safe haven from the suppressed or secret cures that I get way too many of, Heck my mother in law just sent my wife a doozy about a nut in Germany who advocates raw foods but not just the usual healthy vegetables , but even raw meat including chicken as a cure.
I qualified the forum as "relatively free" because I think those who coddle and try to dialog with the conspiracy/Mexican/FDA oppressed doctors/magic crystals etc etc posters are kidding themselves. I'm with you on this one all the way,

Last edited by Charm2017; 03-30-2009 05:03 PM. Reason: typo

65 yr Old Frack
Stage IV BOT T3N2M0 HPV 16+
2007:72GY IMRT(40) 8 ERBITUX No PEG
2008:CANCER BACK Salvage Surgery
25GY-CyberKnife(5) 3 Carboplatin
Apaghia /G button
2012: CANCER BACK -left tonsilar fossa
40GY-CyberKnife(5) 3 Carboplatin

Passed away 4-29-13
Joined: Jun 2007
Posts: 5,260
Patient Advocate (old timer, 2000 posts)
Offline
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 5,260
Liz, I sure am not one that is fortunate. LOL I ,make it month to month . But you know something, I guess that is fortunate and I am happy to be able to say that. You are one smart lady and Charm is one intelligent guy. Have you noticed that neither of us use $75 words. LOL Hell couldn't spell them if I did know a few.


Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
EzJim #92882 03-30-2009 09:46 PM
Joined: Mar 2008
Posts: 3,082
Patient Advocate (old timer, 2000 posts)
OP Offline
Patient Advocate (old timer, 2000 posts)

Joined: Mar 2008
Posts: 3,082
Now hold on there Jim, I don't use $75 words either. Not when I can muster up $100 words at a minimum and prefer the $500 ones. smirk
Blame it on being competitive in Catholic school and seven years of Latin prepping for the priesthood (never ordained except ULC)
The English major in me still revels in alliteration and allegory, even as the populist in me is wary of sending friends scurrying for the dictionary.


65 yr Old Frack
Stage IV BOT T3N2M0 HPV 16+
2007:72GY IMRT(40) 8 ERBITUX No PEG
2008:CANCER BACK Salvage Surgery
25GY-CyberKnife(5) 3 Carboplatin
Apaghia /G button
2012: CANCER BACK -left tonsilar fossa
40GY-CyberKnife(5) 3 Carboplatin

Passed away 4-29-13
Page 1 of 2 1 2

Link Copied to Clipboard
Top Posters
ChristineB 10,507
davidcpa 8,311
Cheryld 5,260
EzJim 5,260
Brian Hill 4,912
Newest Members
Jina, VintageMel, rahul320, Sean916, Megm37
13,103 Registered Users
Forum Statistics
Forums23
Topics18,168
Posts196,925
Members13,103
Most Online458
Jan 16th, 2020
OCF Awards

Great Nonprofit OCF 2023 Charity Navigator OCF Guidestar Charity OCF

Powered by UBB.threads™ PHP Forum Software 7.7.5