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Reluctant to Post

Jimbo55's picture
Jimbo55
Posts: 572
Joined: Jun 2010

Yes I’ve been reluctant to post on this forum lately. I am now 1 week post treatment and after 4-5 rough days I am already feeling better. And I didn’t have it very rough to begin with. My treatment has been a walk in the park in comparison to what most everyone else has gone through. When I read the problems Debbie is going through, the post treatment woes of Lena Rose and her husband and hear the stories of CajunEagle, RushFan and Dennis, to site only a few examples, I feel almost guilty/hypocritical coming on here and posting anything since I haven’t gone through anything close to what these fine folks have endured. I can only admire all of you for what you have/are going through, not knowing if I would have the same courage if I were in your shoes. Cheers.

Jimbo

rush1958's picture
rush1958
Posts: 197
Joined: Jul 2010

Jimbo,

I know how you feel. I didn't have it very rough in comparison to many of the folks here either.

I'm a little over six weeks post treatment. Within two weeks I was feeling much better and getting my taste back. Within four weeks I had put eight pounds of weight back on and at five weeks had my PEG removed.

I never had a problem with swallowing or mucous during the whole ordeal. I never had sores in the mouth and I never experienced severe dry mouth. I had a PEG tube installed that I never used.

In fact, the roughest part of this was when they removed my tonsils for biopsy (there was nothing wrong with them) and when they installed the PEG tube (it hurt for two weeks).

During treatment I hit one rough patch during the second chemo. I had nausea for about ten days straight. Nothing they gave me would stop it. I even got a chuckle a few days ago from a poster who was praising the virtues of Zofran for being so effective with nausea. I laughed because I could set my watch to the fact that I'd throw up five minutes after taking each dose..... Everybody is different.

I'm like you, I admire the courage of everyone who has to face this beast. I've learned a great deal from their experience. I'd like to think that my path was made easier by learning from those that walked the path before me.

Rush

Glenna M's picture
Glenna M
Posts: 1580
Joined: May 2009

I read all of the posts each day and would love to be able to offer my advice to everyone...but I feel guilty sometimes so I don't. I do reply to those who are concerned with the side effects and what they should expect so they will understand that everyone is different, I am a perfect example of someone whose recovery was basically painless and relatively easy.

My treatment, 35 rads and 6 cisplatin for my larynx and 4 Stereotactic Radiosurgery for my lung, was not a walk in the park but my side effects and recovery were so much easier than others. Yes, I had thick mucous for a while, had to use my tube for feedings for a few months because everything tasted so bad not because I couldn't swallow. For me the fatigue was the worst, I slept through most of last summer, maybe that's why my recovery was so easy ;-)
Both of my cancers are inoperable so I could not advise anyone about pain management or healing time. My side effects were mild compared to many others here, nausea was manageable with meds, never had any pain or thrush. Heck, I didn't even lose my hair like I was told I would because of the cisplatin ;-)

I do post whenever I feel I have something to offer, encouragement or advice, but there are many, many posts that I don't because I have not experienced what they are going through.

I think those of us who had it "easy" still need to respond to encourage "newbies" and let them know that it may not be as rough a road as they have read about.

Rush, as you said - I'd like to think that my path was made easier by learning from those that walked the path before me. I also feel this way so I try to help and encourage all of those who are just starting down this path.

My best to everyone,
Glenna

Kimba1505's picture
Kimba1505
Posts: 557
Joined: Apr 2010

I cannot speak for all caretakers...but I think we share this feeling as well...but what I tell myself is that what I write brings another perspective. When I read post, I rarely remember the particulars of someone's diagnosis or treatment. Glenna, you are perfect example: to me you are someone with a knowledge base that is much bigger than Mark's and mine...simply because you have been facing this for a longer period of time. Your posts are always very solid and comforting...I never think about you not losing your hair. :)

The range that is shared here is huge, and being a "newbie" only 4 months ago I can remember the benefit those different experiences had for me: It allowed me to "HOPE FOR THE BEST AND PREPARE FOR THE WORST".

Plus, I am a huge believer that we never know what, of what we say, will help someone else. We often have our attended message; but there may be something else that was secondary to our message, that is picked up on and helpful.

So Rush, Jimbo, and Glenna, please keep posting...and I will too. Everyone here is needed to help others and everyone here needs help, even if not all the time. The balance of Give and Take that comes with time on these boards is very AWESOME!!!

Lena Rose
Posts: 73
Joined: Apr 2010

Please don't feel guilty or be reluctant to post. I think it's important for people that read the board (and I think there are many out there that are just reading and not posting)to know that treatment and recovery are so different for everyone. Wishing you continued speedy progress in your recovery!

Lena Rose

debbiejeanne's picture
debbiejeanne
Posts: 2535
Joined: Jan 2010

Jimbo, don't feel guilty. Me and the others are very glad that others don't have as many problems or suffering!! But it is the rougher stories that give us more strength. It breaks my heart to read what people are going thru. I just pray for God to heal them and bring them thru this battle. I also agree with Kim, everyone has something to offer. I find the biggest help for me in CSN is the understanding and support. I have met such wonderful people hear that I feel I've gained a family! The understand and support is PRICELESS!!!!!!!!!!!!!!!!!
God bless you,
debbie

micktissue's picture
micktissue
Posts: 432
Joined: Dec 2009

I have had similar reactions to what I read here, especially from Mike. But here's another take on it. If the suffering of others brings perspective to my own, and makes mine more bearable because of it, I am grateful. Help and support can come in many ways. You have helped to highlight one. Thanks.

Best,

Mick

Joel4's picture
Joel4
Posts: 209
Joined: May 2010

I feel the same exact way, especially since I have had surgery only. I'm in the same club but lack the "cred" that comes with rads/chemo.
My hope is that I never get that "cred".
Still, many of you have been very supportive and informative and I am very grateful for that.

Hal61's picture
Hal61
Posts: 656
Joined: Dec 2009

Jimbo,

Thanks for your post. I’ve often thought the same. I’ve been on the Internet since it was opened to the public, pre graphic WWW. We had to use FTP to download files at sites, and GOPHER to move around. And from the beginning there were forums, starting with the all-inclusive USENET newsgroups. I’ve lurked and participated in discussion groups ever since.

To me, this forum is unique, even given the community it serves. The people on this site maintain a level of thoughtfulness and compassion I’ve not seen before. No matter what the subject, every other forum I’ve followed has its problem people, and I’m not talking about symptoms.

Like you, I’m always reluctant to post my complaints because of the humility the posts here have instilled in me. That’s a wonderful gift the people you’ve mentioned, and others like them, have given me.

Like most, I post mainly information and encouragement—I know you do too Jimbo. But, I am grateful to people who relate their discomfort or fear, because my own concerns are always echoed.

So just keep posting Jimbo, whether it’s to root others on, share experience, or maybe most important, vent. With the people you have around you, I just don’t see how you can go wrong.

Hal

JUDYV5's picture
JUDYV5
Posts: 392
Joined: Jun 2010

I need to hear the positive as well as the more difficult stories. I did not have surgery
and I think my recovery is going well. (It helps getting a NED at 7 weeks) However, that does not minimalize what I went through. What we all went through. This community has given me answers before I even knew I had questions. I truly do not know what I would do without any of you.

pattyanny's picture
pattyanny
Posts: 523
Joined: Jul 2009

I too feel the same way! Sometimes it is good that someone else puts into words the feelings I have, but cannot find. I appreciate every post I read, they are so poignant,but I do not post often. I too came thru TX okay, but these side effects on my body are more difficult then the TX! Also the fallout on my family is devastating. I believe my marriage of 20 years will end very soon. I cannot explain what effect it has had on my 2 teens. I continue to pray & stay strong, but it seems that the "new" me is not going to be accepted. I have realized many things during this year of hell. One of them is, I will continue to fight, take care of myself, and enjoy each day to the fullest. God bless you with continued health and ease in TX. Keep posting! You shed light on a subject that needed to be discussed. Thank you! Patty

dennis318's picture
dennis318
Posts: 349
Joined: Feb 2010

Hey Patty, I can reflect on your statement your wrote of family, mine wasn't there, to all of you that have spouses, family that live near, congratulations, that can make the difference bewtween living and dying, I drove myselfm to chemo and radiation and never asked or did i get any help, I would go to work and heave in the bathroom, never missing a day, because I had a job that didn't consist of sick days that where paid for, and I paid our house bills because my wife didn't think of how bad cancer could get or be, I was left her on earth for a purpose, and i will live my days for happier moments, you here that have support, love, be thankful, i had a few good freinds that pulled me threw this all, and i will always remember there help and unselfishness. I will survive!!!!, And be a stronger person when this is all over with! Stay Strong. Dennis

Kimba1505's picture
Kimba1505
Posts: 557
Joined: Apr 2010

Patty, I was not aware of your family dynamics as you faced the biggest fight FOR your life. 6 years ago as I took karate, a fellow student went down with a heart attack. I gathered all the young children that were there and herded them into a small room to keep them away from the tramatic events that took place in the general practice area. I was accutely aware that I was keeping myself away from this medical trauma as well. I was honest with myself that night recognizing a weakness in myself. In a medical emergency there are those that run towards it and those that run away...I had to admit...I was one that ran away. Ironically, in my relationship with Mark (we are both divorced) he expressed from early on "if I ever get sick, will you stay by my side"? I, of course said "yes"...but knowing in my mind that I have a terrible weakness in the medical world, and unconsciousness never seems far away when there are needles and blood.
When Mark was diagnosed, I literally almost lost consiousness, and a fear arose in me...WILL I be able to do this? Stand by his side. Did I have the strength?
I did/do. I don't know where it came from. I made my strategic exits when IVs were put in, and tunnel vision comes in very handy in the halls of hospitals...but I surprised myself, and my love for him helped me overcome some of my serious anxieties.
I guess what I am saying is illness can be rough on a marriage/relationships. It shakes up the way a couple or a family has always functioned. There are divorce statistics on parents with special needs children, and I am sure there are divorce statistics on chronic illness and serious illness. I want to say I am sorry to hear that your marriage may be coming to an end. But when people used to say that to me, I said, "please don't be sorry, while this is hard, I will be much better in the end". And I am. As for your children...there are always opportunities for healing. Your priority right now is you...perhaps people in your family are not used to that...but you know what you have to do. Go girl!

Dennis, in two posts I read today by you, you made the statement, "I was left on this earth for a reason". I have to say I am very struck by the power of that comment. I believe it too. You have been through one of the the most difficult processes I have read on these boards, I often times did not know how to respond, and let the more vetern people here guide you. There is something for you to do on this earth...I do believe you have been through this battle single handed, and find yourself on the other side, with your purpose not yet fulfilled. Kind of exciting if you think about it that way!!

My best to both of you and all on board here.
Kim

Glenna M's picture
Glenna M
Posts: 1580
Joined: May 2009

I read all of your posts and am always amazed...you always seem to know the right thing to say and express yourself beautifully. What truly amazes me is that I can read the sincerity and concern in your responses. Almost as if I can hear you saying this instead of reading it.

You are a very unique and awesome lady and I am very happy that I have had the chance to meet you. Knowing you has made me a better person.

My best to you and Mark...and everyone else on these boards.
Glenna

Kimba1505's picture
Kimba1505
Posts: 557
Joined: Apr 2010

There are compliments we recieve in our lives that will stick for a iife time. Glenna, you just gave me one of those. Thank you.

You are a tremendous gift to these boards as well.
Kim

debbiejeanne's picture
debbiejeanne
Posts: 2535
Joined: Jan 2010

Kim, I am exactly the same way. I passed out yrs ago when I got my blood drawn for my marriage license. Still today, I cannot look and I'm petrified of IVs. I just pray that if Jr ever needs me like I needed him, that God will make me the person I need to be.
Take care and God bless.
debbie

kimmygarland's picture
kimmygarland
Posts: 313
Joined: Aug 2009

My husband didn't have too terrible of side effects either. He HAD most of them, they just weren't as bad as some here. Of course, maybe it was just him being stoic, I will never know. I finally basically forced pain medication on him so he could get some nutrition down as he did not have a peg.

And I agree with the comments on Kimba's posts - as a caregiver I have gotten so much insight from you Kimba.

Thanks to all who post - there is so much FIRST HAND knowledge here, and that is so much better than reading the statistics and all the "offical" stuff out there that scares the krap out of us.

lady4darknight's picture
lady4darknight
Posts: 90
Joined: May 2010

Jimbo,
When I first came here, I was reluctant to post also. But then as read more and went farther in my treatment I realized that I had questions that needed answers and yet there were questions I could add insight to. I would be lost without all the wonderful family I have found here. God Bless you all.

Debbie

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