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#147376 - 03/20/12 10:42 PM Re: Am I Crazy [Re: zengalib]  
Joined: Dec 2010
Posts: 289
AnneO Offline
Gold Member (200+ posts)
AnneO  Offline
Gold Member (200+ posts)

Joined: Dec 2010
Posts: 289
Kansas
Hi,
Yes, sign me up for the list of people who are not satisfied with the side effects of cancer treament. One thing that helped me along was the chance to get to peruse a book called, "Explain Pain". It is an expensive book with great art work that my physical therapist had, and let me check out for weeks! From reading it I became convinced that our perception of pain was at least part of the difference in whether or not we experience pain. I cannot go into all of it with you here now (could not adequately express the content) and it is true most of us, myself included, just want a pill, or some kind of easy fix for how we feel.

An example: I know I feel like my neck is swollen even when it does not look that way to others. In fact any swelling that is there is not much. One of the PT's suggestion was to touch my neck periodically to reassure my brain that my neck is normal sized. Maybe no one else experiences this, but this perceived swelling gives rise to other unpleasant symptoms for me.

Part of it is accepting what our new normal is, like it or not. Our old normal was something that our brains were accustomed to. It is a pity that medical personel are not better trained to address this giant adjustment that we have to make.

It is great that you are 6 years away from your treatment though.
Best,
Anne


SCC tongue 9/2010, excised w/clear margins:8 X 4 mm, 1 mm deep
Neck Met, 10/2010, 1 cm lymph node; 12/21/'10: Neck Diss 30 nodes, 29 clear, micro ECE node, part tongue gloss, no residual scc
IMRT & 6 cisplatin 1/20/11-2/28/11 at MDA
GIST tumor sarcoma, removed 9/2011, no chemo needed
Clear on both counts as of 10/2015
#147378 - 03/20/12 11:15 PM Re: Am I Crazy [Re: AnneO]  
Joined: Jan 2009
Posts: 1,844
EricS Offline
Patient Advocate (1000+ posts)
EricS  Offline
Patient Advocate (1000+ posts)

Joined: Jan 2009
Posts: 1,844
Idaho
Sounds like a great recommendation Anne, I'll have to check it out. As far as pain goes, there are several studies out there that point to the fact that pain isn't just a physical thing, but a mental and emotional one as well.

One of the reasons Dr's prescribe antidepressant meds for pain relief is actually because our mind is more sensitive to pain when we are depressed. Odd but true.

For many the emotional healing part of cancer is the hardest, I know this is true for me. Everyday I wake up and have to make the choice to be positive, to look past the disfigurement and pain and enjoy my family and the time given to me. It's a daily struggle and I'm thankful that I have great friends on these forums and in life that help support me everyday. Strength in numbers is a phrase I use very often.

Keep pluggin into these forums, friend some of us on Facebook and plug into the truly amazing people that understand your struggle. I don't know where I'd be if it weren't for the relationships and guidance I've found on these forums, probably still drowning in a sea of despair and opiates.

Be well

Eric


Young Frack, SCC T4N2M0, Cisplatin,35+ rads,ND, RT Mandiblectomy w fibular free flap, facial paralysis, "He who has a "why" to live can bear with almost any "how"." -Nietzche "WARNING" PG-13 due to Sarcasm & WAY too much attitude, interact at your own risk.
#147379 - 03/21/12 12:29 AM Re: Am I Crazy [Re: EricS]  
Joined: Dec 2010
Posts: 289
AnneO Offline
Gold Member (200+ posts)
AnneO  Offline
Gold Member (200+ posts)

Joined: Dec 2010
Posts: 289
Kansas
I did not know about the link between depression and pain, but it makes sense, Eric.

Just shows that we have to fight against the foe on many sides: keep on seeking the best medical help, keep our psyches in good shape as well as our bodies as best we can, keep up the physical activity, keep and talk with our friends, our support system! So thus, we "keep on keeping on"!

Best to all,
Anne


SCC tongue 9/2010, excised w/clear margins:8 X 4 mm, 1 mm deep
Neck Met, 10/2010, 1 cm lymph node; 12/21/'10: Neck Diss 30 nodes, 29 clear, micro ECE node, part tongue gloss, no residual scc
IMRT & 6 cisplatin 1/20/11-2/28/11 at MDA
GIST tumor sarcoma, removed 9/2011, no chemo needed
Clear on both counts as of 10/2015
#147386 - 03/21/12 04:47 AM Re: Am I Crazy [Re: AnneO]  
Joined: Jan 2009
Posts: 1,844
EricS Offline
Patient Advocate (1000+ posts)
EricS  Offline
Patient Advocate (1000+ posts)

Joined: Jan 2009
Posts: 1,844
Idaho
Totally agree and I'm glad that you brought up the "keep up the physical activity". Those that know me know I work out often, for several reasons however a major one is that exercise is shown to be as effective as antidepressants on depression. Where the effects aren't immediate, over a period they are found to be equally effective.

Helps with pain, outlook etc...also studies show that the higher percentage of lean muscle mass on a cancer patient generally leads to a better prognosis. One more reason I lift like a mofo.

Love the "keep on keepin on", it's how I live!



Young Frack, SCC T4N2M0, Cisplatin,35+ rads,ND, RT Mandiblectomy w fibular free flap, facial paralysis, "He who has a "why" to live can bear with almost any "how"." -Nietzche "WARNING" PG-13 due to Sarcasm & WAY too much attitude, interact at your own risk.
#147389 - 03/21/12 01:51 PM Re: Am I Crazy [Re: EricS]  
Joined: Mar 2008
Posts: 3,082
Charm2017 Offline
Patient Advocate (old timer, 2000 posts)
Charm2017  Offline
Patient Advocate (old timer, 2000 posts)

Joined: Mar 2008
Posts: 3,082
Alexandria VA
Margie

Don't know if Patsy Cline's song: Crazy was popular downunder, and even if she was, it was probably before your time. your thread title: Am I crazy made me think of it.
Quote:
Crazy, I'm crazy for feeling so lonely
I'm crazy, crazy for feeling so blue...
Worry, why do I let myself worry?
Wond'ring what in the world did I do?...
I'm crazy for trying and crazy for crying


But what else can we do but keep trying? You are not alone in having pain and radiation complications. Perhaps our doctors should start preparing us like the radio and TV ads all do when discussing any TX or medicine: " Individual results will vary ". For many of us, daily pain is the "new normal".

For me, exercise and wine really help my daily pain - although not at the same time wink
Sorry it's going so hard for you
Charm


Last edited by Charm2017; 03/21/12 01:52 PM. Reason: typos

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
#147392 - 03/21/12 02:18 PM Re: Am I Crazy [Re: zengalib]  
Joined: Nov 2006
Posts: 2,671
Anne-Marie Offline
Patient Advocate (old timer, 2000 posts)
Anne-Marie  Offline
Patient Advocate (old timer, 2000 posts)

Joined: Nov 2006
Posts: 2,671
TN
Love that Patsy Cline - and her rendition of "Crazy". I have it on sheet music and bang away at it when I hit the low-points. I think it's ok to get crazy - it helps to relieve stress. My old Abnormal Psychology prof used to say that no one is completely normal anyway. About exercise, that is so good, too! At one of my "low points" as a CG, I found myself laying in bed, on my back, not able or wanting to even get out of bed. After a while, I slung one of my legs over the side of the bed with my foot resting on the floor feeling like I could not go any further. I remembered someone saying "one foot in front of the other" and thought, "OK, I did it, now what?" It took a while, for me. It's a gradual process. It takes practice. Small steps. And you begin to notice things do get better. Margiel - you have something really important going for you - your family and your beautiful grandchildren! This is your "Why" that Eric mentions in his signature line.


Anne-Marie
CG to son, Paul (age 33, non-smoker) SCC Stage 2, Surgery 9/21/06, 1/6 tongue Rt.side removed, +48 lymph nodes neck. IMRTx28 completed 12/19/06. CT scan 7/8/10 Cancer-free! ("spot" on lung from scar tissue related to Pneumonia.)



#147416 - 03/22/12 10:40 PM Re: Am I Crazy [Re: Charm2017]  
Joined: Jun 2007
Posts: 9,590
ChristineB Online content
Administrator, Director of Patient Support Services
ChristineB  Online Content
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 9,590
PA
Margie, I would like to clarify something about facebook. You cant find a better avenue for info and support than the OCF forum. Facebook could never take the place of the OCF forum. This is the very first place to go to for questions and help. So if you have questions, this is the right place to ask. OCF is also a place where everyone can be anonymous. To further your friendships, facebook is a great place for that.

Over the years, many of us have become friends over on Facebook. In fact over 2 years ago I began a list of OCF members who are also on facebook. Its great to put a face with a name, but remember it also will take away your anonymity. It also gives us a chance to talk about things other than our health. Its a great way to get to know some other interesting things about other OCF members. Im not a big facebook user, I use my facebook to further my OCF work and also mention my other projects. Guess that makes me pretty dorky but its just what I do.

Here is the link for our facebook list. If you would like to join, please reply on that thread and I will add you to our list.

OCF Facebook list


Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
#148003 - 04/09/12 08:57 AM Re: Am I Crazy [Re: MargieL]  
Joined: Feb 2012
Posts: 38
seattlepaul Offline
Contributing Member (25+ posts)
seattlepaul  Offline
Contributing Member (25+ posts)

Joined: Feb 2012
Posts: 38
Washington
I've noticed, when I am lowest, that to smile at someone who is lower, makes me feel better, as well as the other person.
Smiles indeed do multiply, fester, and incite riot, in the crestfallen.
Much better than a pep-talk, because it's your own idea, it's the only thing I've found, that works from the inside out, and is 100% effective.


69yo male, Steam Engineer, Me=4,SCC=0, loving wife, living life as it comes (no other option)
We are all born from Mother, but live and die alone.
Make the best of it, Mommie did all she could, daddy was just a guidance councelor, the rest is ALL up to you.
...and now, 3rd occurance: Surgery 5/1/12
#148011 - 04/09/12 11:28 AM Re: Am I Crazy [Re: seattlepaul]  
Joined: Nov 2006
Posts: 2,671
Anne-Marie Offline
Patient Advocate (old timer, 2000 posts)
Anne-Marie  Offline
Patient Advocate (old timer, 2000 posts)

Joined: Nov 2006
Posts: 2,671
TN
Yup, gotta agree with that, Paul - Smiling even when the other person is grumpy, and even if it doesn't get a smile back, makes them wonder what you're up to. smirk


Anne-Marie
CG to son, Paul (age 33, non-smoker) SCC Stage 2, Surgery 9/21/06, 1/6 tongue Rt.side removed, +48 lymph nodes neck. IMRTx28 completed 12/19/06. CT scan 7/8/10 Cancer-free! ("spot" on lung from scar tissue related to Pneumonia.)



#148028 - 04/09/12 07:38 PM Re: Am I Crazy [Re: Anne-Marie]  
Joined: Jul 2010
Posts: 531
SUEZ Offline
"Above & Beyond" Member (500+ posts)
SUEZ  Offline
"Above & Beyond" Member (500+ posts)

Joined: Jul 2010
Posts: 531
AURORA, OH
I always wonder if Ron will be off his pain meds but in reading on here I guess probably not. He will be going to Pain Management again and they try to give him damn Oxycontin which he is very mean when he takes it and I understand that it is timed release but HE IS MEAN when he takes them. I told him to tell them that. Also they tried something begins with an A that has morphine in it and that makes him itch. I think I need to go with him to talk to these people and tell them exactly what this stuff does to him. He is absolutely fine and content with his Oxycodone. Isn't that stuff like milder pain relief than having to go overboard with that Oxycontin crap?


CG to Ron
Out of Pain 4/3/13
4/12-lung and under chin growth no treatment
1/13/12 lung biopsy
6/11 recur 6/30 resection #2 Clear margins
Clear 12/10
Surg 5/13/10 neck dis/nodes part gloss/flap R thigh all teeth out
RAD 30 8/10
DX 4/2/10 "Oral Cavity" T3NOMO
12/28/07 Non Hodg Lymph remission 7/08
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