Posted By: MargieL Am I Crazy - 03-18-2012 06:11 AM
I am six years out of treatment and I still have the same pain as I did over all these years, the drs are blaming it on the tissue damage from the radiotherapy I have just spent another week in hospital with pneumonia due to the aspirations into my lungs. I have also just had another throat dilatation. I know I should be used to it by now, but at the moment I just feel so angry. I just feel like I have had enough. The only thing that keeps me goiing is my family and my six beautiful grandchildren. Thanks for letting me vent.
Posted By: lam007 Re: Am I Crazy - 03-18-2012 09:57 AM
You are not crazy. You should not be used to it. And the people we love are what makes life worth living. Have a rant and a vent then get back to loving (and being loved by) your family and six beautiful grandchildren.

Oral cancer sucks but there are some things it can't take from you.
Posted By: Maria Re: Am I Crazy - 03-18-2012 03:51 PM
Hi, Margiel - absolutely, vent away. I wonder if the fact that you are taking such good care of yourselve with diet and fitness make the contrast with your poor damaged throat and the rest of your body all the more annoying. If you were an 'old' grandmother it would be just one more thing, but you strike me as a 'young' grandmother.

You are so lucky to have 6 grandchildren, though. I don't have any (yet) and always borrow grandbabies to hold when I get the chance. Best wishes from the other hemisphere and keep fighting the good fight!

Maria
Posted By: Cheryld Re: Am I Crazy - 03-18-2012 05:16 PM
Hi congrats on being six years out that's fabulous! I hear you onthe side effects! It sucks! Feel free to vent - its great yourw doing all you can to feel your best. Take care and hugs...
Posted By: julieann Re: Am I Crazy - 03-18-2012 08:00 PM
Hi Margiel:
I am so glad you posted - I thought I was the rare one who still suffered, now more than earlier after my treatments, with problems, which the doctors all end up saying are associated with after radiation effects. I know my throat was damaged, but several years ago, I was able to swallow better than I can now. I also have the most putrid sweet foul taste 24/7 in my mouth whether I eat something or not. I know our tastes change, but this isn't like something sour tasting sweet, or something sweet tasting bitter; it's foul sweet whether I eat or not. The mucus goes from frothy to pudding, no matter if I drink water or not. I've been to numerous ENTs, gastro drs. to no avail - end up with the diagnosis of after-radiation effects. I'm still trying though - going to a specialist in Vanderbilt, Nashville, TN next month. There, not that I've had my "vent" I feel much better. Just wanted you to know you're not alone.
julieann
Posted By: ZendaT Re: Am I Crazy - 03-18-2012 11:58 PM
Greetings Margie and Julieann. I too am a member of the Nasty After Effects of Radiation club. I had a modified radical neck dissection in addition to chemotherapy and radiation in 2005. I have the ongoing mucus "goo" and that putrid foul sweet taste. I just had the titanium bar removed from my chin and debridement of the dead bone in my jaw. I think there are a number of OCF members with effects several years out. I'm very happy to be around to vent, and I am very happy that strides have been made in the delivery of radiation so that fewer survivors will be plagued by radiation's longer term effects.
Posted By: MargieL Re: Am I Crazy - 03-20-2012 08:19 AM

thank God, there are some others out there who are still suffering, I dont mean that I am glad you are in pain, but at least you understand. Todays pain is unbelievable and I feel like doubling up on my meds, but I wont, it is only two hours till bed time and I can take my sleeper friend and get a few hours. My tongue is burning, my jaw is aching oh well you know what I mean. Maybe one morning we will wake up and it will be gone. We have to live in hope anyway. Thanks for your help.
Margie
Posted By: ChristineB Re: Am I Crazy - 03-20-2012 01:21 PM
You are not alone with the pain. My shoulder has some big issues since my surgeries a few years ago and still aches. Some days are worse than others and I will have facial muscle spasms which stop me in my tracks. Do the very best you can with what you have. Here in the US there are pain management clinics. I havent been to them but Ive heard good things about them having lots of options to help. You have OCF so you are never alone with your after effects!

Best wishes for many better days ahead!
Posted By: Maria Re: Am I Crazy - 03-20-2012 05:07 PM
One of my riding buddies is a neurologist specializing in pain management - among her patients are cancer survivors dealing with chemo-related neuropathy and other treatment-related issues, so perhaps a trip to a specialist might help.

Julianne, hope that your trip to Vanderbilt yields good results - be sure to let us know how your trip goes.
Posted By: zengalib Re: Am I Crazy - 03-20-2012 05:16 PM
I am still having aftereffects of my treatments, after nearly 3 years, but, hey, guys, we are all still here! This is a great place to come and vent, though. Right now the neuropathy in my feet is really annoying, and I really wish that I could enjoy eating again. Hang in there, Margie!
Posted By: AnneO Re: Am I Crazy - 03-20-2012 10:42 PM
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
Posted By: EricS Re: Am I Crazy - 03-20-2012 11:15 PM
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
Posted By: AnneO Re: Am I Crazy - 03-21-2012 12:29 AM
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
Posted By: EricS Re: Am I Crazy - 03-21-2012 04:47 AM
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!

Posted By: Charm2017 Re: Am I Crazy - 03-21-2012 01:51 PM
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[/quote]

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

Posted By: Anne-Marie Re: Am I Crazy - 03-21-2012 02:18 PM
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.
Posted By: ChristineB Re: Am I Crazy - 03-22-2012 10:40 PM
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
Posted By: seattlepaul Re: Am I Crazy - 04-09-2012 08:57 AM
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.
Posted By: Anne-Marie Re: Am I Crazy - 04-09-2012 11:28 AM
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
Posted By: SUEZ Re: Am I Crazy - 04-09-2012 07:38 PM
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?
Posted By: KP5 Re: Am I Crazy - 04-09-2012 08:40 PM
If he's itching he's allergic. That what they told me anyway. I had taken Vicodin for a torn hamstring. It was fine for a week or so, but then I would literally claw myself til I was bleeding. They said to stop it immediately.
Kevin took Lortab. He was in a GREAT mood from it. Just FYI.
Kathy
Posted By: EricS Re: Am I Crazy - 04-10-2012 06:45 AM
Actually Kathy itching is a common non-allergic reaction to most opiates. Here is a link to an article that explains it a little better than I could, however it has to do with the opiate receptors. It's an interesting read

http://www.sciencedaily.com/releases/2011/10/111013121516.htm
Posted By: SUEZ Re: Am I Crazy - 04-10-2012 07:37 PM
Ya it's weird, cuz I have a cough medicine prescription for Hydrocodone I think it is and all of sudden when I took it before I went to bed when I needed it last time I started friggin itchin like crazy!! So I just thought it was me. So I had to take it again I only took it when I needed it for bad coughing spells WHICH I learned were really from my GERD and Nexium fixed that as well as my burning mouth! Whew I got scared there for a bit but anyway I took it again and damn if I didn't claw myself to near death again so guess what I don't take anymore! Yep. I have to read that up there Eric to find out why it just happened to me after all the years I've taken it before and it never happened. What is Lortab? Oh I'll look it up lol.
Posted By: KP5 Re: Am I Crazy - 04-11-2012 01:49 AM
Really Eric? I will read up cuz' they acted like it could kill me and told me to stop taking it right away. Even if it wasn't that dangerous, the itching was so horrible even the pain was better. Thanks for the info!!
Posted By: MargieL Re: Am I Crazy - 04-17-2012 07:52 AM
Thank you all for your replies....some gave me a good laugh...which is probably what I needed.
the only medication which gives me some reprieve from the pain is Ordine which not takes he pain away but also makes me feel better within my self. I dont know what it is called in the northern hemisphere but will look it up and post it on here.
Margie
Posted By: CubanKeith Re: Am I Crazy - 05-16-2012 04:27 AM
dear am i crazy, possibly you are? Mad as a brush?
I chose this thread because I wish to ask the same question? I am fairly new and am all set to start a 15 week journey into hell?
I have two lovely daughters 2 and 3 I used to run marathons and do Triathlons. I have no pain no discomfort but have squalumus cells in a lymph gland that resemble a Bollock.(But on my neck)I was feeling the centre of attention and (warpped thinking)enjoying a break from work? Lovely nice people looking after me. The point is are you saying was it all worth it and quality of life and all that?
It is always worth it, the grand children adore you,you gave up smoking,sound like you have let your drinking fall away, I would recommend a Mojito on a sunny day and a single malt maybe Lauguvalin when the melancholy hits and loose the casual give the whisky the attention it deserves. These are 'Big Man' times to scream at the Moon. Your post helped me.

Since they took out eight healthy teeth and I am looking at and just becoming aware that the Rad damage is nasty and long lastin.I have lost my sense of humour.
I want them to say its a misdignosis? I want to be there when my daughter is 30? Iam 53 now. If I run and hide and decline treatment do I get swallowed up by Cancer in 3 or 4 years?
Sorry if its all me me me.On your post. I am learning the protocols?
I cant even right a good present history.
Pets, cats enescopy = Barrets disease one week of oesophagus cancer nightmare me jumping the gun.Now its root of tongue pea shaped primary,large lymph node General> biopsi. HPV host with one lymph node SCC.
Next Thursday Picc line insertion.Then 6 weeks of chemo followed by 6 weeks of rad and chemo. I am going in painless and health and coming out a mess ??? Should I make a run for it??

[b]"I love you guys"[/b]








Posted By: Charm2017 Re: Am I Crazy - 05-16-2012 01:42 PM
Cuban Keith
[quote]
If I run and hide and decline treatment do I get swallowed up by Cancer in 3 or 4 years?[/quote] YES and it will be more painful than you can even imagine.
Charm
Posted By: EricS Re: Am I Crazy - 05-16-2012 03:10 PM
Keith,

You're relatively young my friend and should be able to withstand treatment fairly well. Don't let fear stop you from not taking the steps to keep you from spending precious time with those you love. Treatment is the only way to beat this disease, a disease that will kill you in an extremely painful manner, something I don't wish on anyone, or any family to have to witness.

We all understand how bad treatment is, some of us like Charm has had to endure it more than once. Keep your chin up, walk the road to be with your family and let us help you through.


You got this.

Eric
Posted By: davidcpa Re: Am I Crazy - 05-18-2012 12:42 PM
Our experience on this site is that patients who refuse Tx are no longer associated with this world within a year and as Charm stated above this is possibly the last way I would want to die. Now please don't take this the wrong way BUT STOP YOUR WHINING AND EMBRACE THIS TX AND RID YOUR BODY OF THIS CANCER!!!
Posted By: tamvonk Re: Am I Crazy - 05-18-2012 10:05 PM
Yep. The time for self pity and denial has gone.
Time to just do it now.
You have to be here to see those little ones of yours grow up.
This treatment is very doable. We have done it . You too can do it. Hug your family, they need you.
Tammy
Posted By: KP5 Re: Am I Crazy - 05-19-2012 12:42 AM
But....don't believe for a minute we all weren't right where you are at one point. Once you start you will get the feeling that you are now in control because you are killing it and that's a great feeling. Without it, you will NOT be around until your daughter is 30.
BTW...Kevin was 52 when we started the battle. Turned 53 during.
We're here for you!!
Kathy
Posted By: CubanKeith Re: Am I Crazy - 05-21-2012 02:14 AM
Okay Dad, Your only 5years older than me. But thanks for the solid advice. ?Are you the TERMANATOR on OCF?

"I'll be BACK"
Posted By: MargieL Re: Am I Crazy - 07-02-2012 07:45 AM
Thanks Charm for Patsy's words, and verybody else for your kind comments. I have just had a BCC cut out right on the scar on my neck from the SCC surgery maybe I could make up a song about it LOL, it was rather large by the time I got around to getting it cut out, but hell what is a scar on a scar, nuttin right? I am practising on getting my weird old sense of humour back I thought
it was about time to pick myself up, besides I have two of my grandkiddies coming to stay with us for a week, cant wait.

Magie
Posted By: EricS Re: Am I Crazy - 07-02-2012 11:28 AM
Keith, I betting you're on pain meds, I was a big dick when I was on them too. It'll pass brotha when you get off of them...unless it's a chronic pre-existing condition as in my case smile
Posted By: MargieL Re: Am I Crazy - 07-10-2012 07:58 AM
Hi Maria, I guess I am a �oung" grandma, as my eldest grandson is 16...and I am 62....they keep me young especially the youngest grandson aged 8 calls me hey old grandma, he just cracks me up with laughter..
Posted By: Maria Re: Am I Crazy - 07-10-2012 02:06 PM
Your youngest grandson sounds like a character! Glad you are picking yourself up - and have a great week with the grandkids. I will have my niece (the fancy attorney) up for a day in the near future, and I know I am looking forward to that.
Posted By: MargieL Re: Am I Crazy - 08-03-2012 07:59 AM

thank you all for your comments, I have got over the "why me" for now it will come back again I am sure and I know I can come here and vent and get a good slap up the back of my head to get me back to "normal" Thanks and good luck to you all.
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