I think I'm dying

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RE: I think I'm dying

by Dlynn1210 on Tue Jun 19, 2012 11:51 AM

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On Jun 19, 2012 4:28 AM teresa04 wrote:

just reading this has made me fill so much better i also have cancer .and i fill it will kill me also  but maybe not .my cancer head and neck had 8 chemos and 35 radation treaments.they "" target="_blank" rel="nofollow">http://treaments.they " target="_blank" rel="nofollow">treaments.they call today to schueld my pet scan and that scars me also because if there is any caner i will  no longer be able to eat and i will have a track mine is also hpv

Teresa -

Trust me, the eight weeks after treatment ended was worse than the previous 8 weeks BUT once you get to the top and head downward, you are beginning to return to normal (slow but sure journey).  As someone said, the treatment for head and neck cancer is brutal but ten years ago, it was a death sentence - today it is totally cureable.  I go to other blogs where people with other types of cancer are living with a cancer that is terminal - or have little percentage chances for a cure.  They amaze me as to how they handle everything with such dignity and grace.  When I feel like complaining (and all I have to complain about these days is not being able to eat everything I want - almost but not quite), I look to them and instead of complaining I thank God once more that I had a type of cancer that is 100% cureable.  I thank Him for being with me throughout treatment as He promised.  God didn't promise we would never face tribulations, He promised to be with us throughout any trial.  I can still remember the day I got my all clean scan results - and remember my oncology nurse saying "Now you know why we kicked your butt all those months".  AND it was worth everything I went through to hear those beautiful words "ALL CLEAR"!

Diana

RE: I think I'm dying

by Dlynn1210 on Tue Jun 19, 2012 12:04 PM

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On Jun 19, 2012 11:22 AM Diamond_David wrote:

On Jun 19, 2012 4:28 AM teresa04 wrote:

just reading this has made me fill so much better i also have cancer .and i fill it will kill me also  but maybe not .my cancer head and neck had 8 chemos and 35 radation treaments.they " target="_blank" rel="nofollow">treaments.they " target="_blank" rel="nofollow">treaments.they " target="_blank" rel="nofollow">treaments.they "" target="_blank" rel="nofollow">http://treaments.they " target="_blank" rel="nofollow">treaments.they " target="_blank" rel="nofollow">treaments.they " target="_blank" rel="nofollow">treaments.they " " target="_blank" rel="nofollow">treaments.they " target="_blank" rel="nofollow">treaments.they " target="_blank" rel="nofollow">treaments.they " target="_blank" rel="nofollow">treaments.they "" target="_blank" rel="nofollow">http://treaments.they " target="_blank" rel="nofollow">treaments.they " target="_blank" rel="nofollow">treaments.they " target="_blank" rel="nofollow">treaments.they " " target="_blank" rel="nofollow">treaments.they " target="_blank" 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 Tonsil cancer is so curable I'd rather talk about surviving the treatment rather than the disease. I think as an almost 5 year survivor of TREATMENT I can say:

1. The treatment for sure is much worse than the disaease.

2. Our treatment is almost the worst you can go thru to cure cancer (my doctor says that).

3. Just hold on, the beatings will end soon.

4. 2 weeks after your last treatment you will feel worse than during.

5. A feeding tube will be your friend.

6. Drinking is imperative to keeping your throat open.

7. Milkshakes are cooling, soothing and will help to keep your weight on.

8. 4 weeks after treatment you will start to feel much better.

9. 4 months after treatment you will be pretty darn normal.

10. 1 year later you will be normal.

11. You'll have 6 month cat scans to check  up on your cancer, make sure nothing pops up.

12. You will carry a water bottle with you everywhere as your saliva glands will be 50% off and you'll now have to eat medium rare meats.

Most terrible sypmtoms during treatment will be "grin and bear it" But you'll get thru it

David

David

I am sure you will agree that almost five years post treatment (diagnosed July 2007, treatment ended Oct, 2007) we have to actively think about it in order to relay information to those traveling down the road we have already traveled.  Like you, I concentrate on the fact I survvived  - making each day count for something.  To do otherwise would mean cancer monopolizing more of my life than necessary.  We all share life experiences with our fellow man (or woman) and survivor's sharing and supporting cancer patients are all part of what we are all about.   

Diana

RE: I think I'm dying

by teresa04 on Tue Jun 19, 2012 03:35 PM

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Thanks DIANNA reading what everyone has posted sure makes me fill better. i was up till 6am this morning reading all the post on here.it is good to have a site so people can go to and see that they are not alone.

RE: I think I'm dying

by Sdurnell on Wed Jun 20, 2012 05:33 AM

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On Jun 18, 2012 6:12 PM JohnnyO wrote:

Hey mamab -

I think you misunderstood the sentiment of my previous post; it's not that I have anything against older folks, it's that I feel like I've been cheated out of a good part of my youth.  If I were 70 and my kids were all grown and out of the house, I'd feel a lot less anxious and upset about my situation.  Sitting and talking with a bunch of folks older than me would just remind me of how most people don't have to deal with this until they are older.  Me feeling sorry for myself again, but that's how I feel.

Johnny,

I have to appologize, as all this time I thought you were middle aged, around 40 or so.  Didn't know that you were so young.  There is a beautiful weekly post on the NYT Well blog by a young lady who has, I believe, lymphoma and who is very young--20's.  She is a great writer, even during her treatments.  You might identify with her, as she is perhaps nearer your age than some of us old fogies here.

Now about feeling sorry for yourself.  The salient point to remember when thinking about your cancer is that you have available to you treatment that will allow you to save your youth, not to mention middle and old age.  This uncomfortable period--at a year or two, it's short as compared to a life span--can enable you to be there for your kids and see them grow up. 

Treatment is horrible;  it truly sucks.  I get this, as mine did too.  But I feel like I've been given a reprieve here and will be able to have productive, enjoyable years ahead, even as an oldster (I'm 61).  We live in an amazing time and place, and we have the benefit of so many who've gone before. 

No one is forcing you to encounter old people with cancer if you don't want to.  If you don't want to go to a cancer support group, maybe private counseling would be a better fit.  But the fear and anxiety I hear in your post can't be good for you or your family.  I know you have kids, and I worry about what the effect might be on them.

Best of luck to you as you make your way down this path.

Susan

RE: I think I'm dying

by JohnnyO on Wed Jun 20, 2012 03:18 PM

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Hi Susan - Actually, I'm not that young; I'm 50.

My issue with a support group is not that I expect that the people there would be older than me, per se; but that they would be in a different place in their lives than me:  retired, single, no young children.  Aside from that, my anxiety is best handled by going on with my life, being there as usual for my wife and kids.  A support group or therapy would just call attention to that which, frankly, I'm trying to forget.

The lingering side effects of treatment just call attention to my cancer, and the best way for me to handle those is to find out how best to treat them and make them part of my regular routing.  So, right now, my issue is this new side effect: lymphedema.  I just need to know what to do about it, how to avoid it; I don't need to talk about it.  Everything else, so far, is pretty much under control, and I shield my kids from all signs of my anxiety.

Yes, I fear the PET scans - they don't keep me up at night or anything like that - but doesn't everyone?

RE: I think I'm dying

by nwwoman on Wed Jun 20, 2012 06:23 PM

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Thought I'd chime in here on support groups.  I have been following your posts Johnny0 but as my hubby died not long after this tumor/neck diagnosis, I've thought it best to avoid comment -- until now.  I have had three experiences with support groups as a result of this head/neck cancer.  Two for myself (grief groups) and one that was more of a sneak attack, I guess you'd call it, for my departed husband.  I resisted and resisted going to the grief groups, thinking thoughts similar to yours.  After all, most widows are far more aged than I, are retired, don't have a 21-year-old (or close to it) son/child (yes, he's a child to me!) and I figured I'd get through the grieving process with a stiff upper lip, some posts to this site and a carefully measured drink or two at night.  I got nudged and nudged and more nudged to attend, so I agreed to one session.  I was silent that evening.  I did not participate.   I figured these were weak people and, hey, I am not part of that group of humanity. 

Long story short -- I stuck it out and discovered that despite the differences, the benefit was far more than I imagined or expected.  There is something cathartic about being with those who "get it" ....who have experienced a loss of mate or child, which is so different from losing parents, that bonding began in a way I never planned.  Now, I have friends who because they have not walked this path believe that all is well with me, the grieving period is done, and it's time to move on.  There's no more talk/questions about my husband.  His name is not mentioned.  My support group ended but we decided to keep our group alive by phone and by biweekly meets at our homes.  This is now my private group of people who I don't have to explain anything to, apologize to, keep a stiff upper lip with or keep silent about anything I'm feeling or dealing with.  We work problems out together, which is so cool. 

I think the benefits apply in all situations, not just in a grieving one.  I also know that Bob was someone who would have run fast away from the mere mention of a support group at any stage of his cancer treatment.  He's (was) not a church-going person and didn't show any feminine side either...lol.   Loved that guy.  :-))  And, like you, he didn't want to be talking "cancer, cancer, all day long."  Those were his words, many times. But I had a sneaky suspicion that he'd benefit from talking to someone -- deeply -- other than me.  I had a hospice chaplain come visit who did not tell him he was a chaplain.  We kept it secret for some time.  I was delighted to see those two slowly connect more and more.  I then introduced a social worker, again without fanfare or identification -- just friends I'd met, I'd tell him.  Soon, we had a support group!

And I am here to tell you that the support group was an amazing gift to him.  These folks had answers that I could not provide...that doctors did not discuss.  These folks had experience I did not have.  The sharing of life with people who had already walked the path, in this case with others, gave him answers and peacefulness and a place to pour out frustrations with folks who responded differently than a loving best friend/wife.

It was worth it to both of us in both instances. 

That's all I know. 

RE: I think I'm dying

by Diamond_David on Wed Jun 20, 2012 06:49 PM

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On Jun 20, 2012 6:23 PM nwwoman wrote:

Thought I'd chime in here on support groups.  I have been following your posts Johnny0 but as my hubby died not long after this tumor/neck diagnosis, I've thought it best to avoid comment -- until now.  I have had three experiences with support groups as a result of this head/neck cancer.  Two for myself (grief groups) and one that was more of a sneak attack, I guess you'd call it, for my departed husband.  I resisted and resisted going to the grief groups, thinking thoughts similar to yours.  After all, most widows are far more aged than I, are retired, don't have a 21-year-old (or close to it) son/child (yes, he's a child to me!) and I figured I'd get through the grieving process with a stiff upper lip, some posts to this site and a carefully measured drink or two at night.  I got nudged and nudged and more nudged to attend, so I agreed to one session.  I was silent that evening.  I did not participate.   I figured these were weak people and, hey, I am not part of that group of humanity. 

Long story short -- I stuck it out and discovered that despite the differences, the benefit was far more than I imagined or expected.  There is something cathartic about being with those who "get it" ....who have experienced a loss of mate or child, which is so different from losing parents, that bonding began in a way I never planned.  Now, I have friends who because they have not walked this path believe that all is well with me, the grieving period is done, and it's time to move on.  There's no more talk/questions about my husband.  His name is not mentioned.  My support group ended but we decided to keep our group alive by phone and by biweekly meets at our homes.  This is now my private group of people who I don't have to explain anything to, apologize to, keep a stiff upper lip with or keep silent about anything I'm feeling or dealing with.  We work problems out together, which is so cool. 

I think the benefits apply in all situations, not just in a grieving one.  I also know that Bob was someone who would have run fast away from the mere mention of a support group at any stage of his cancer treatment.  He's (was) not a church-going person and didn't show any feminine side either...lol.   Loved that guy.  :-))  And, like you, he didn't want to be talking "cancer, cancer, all day long."  Those were his words, many times. But I had a sneaky suspicion that he'd benefit from talking to someone -- deeply -- other than me.  I had a hospice chaplain come visit who did not tell him he was a chaplain.  We kept it secret for some time.  I was delighted to see those two slowly connect more and more.  I then introduced a social worker, again without fanfare or identification -- just friends I'd met, I'd tell him.  Soon, we had a support group!

And I am here to tell you that the support group was an amazing gift to him.  These folks had answers that I could not provide...that doctors did not discuss.  These folks had experience I did not have.  The sharing of life with people who had already walked the path, in this case with others, gave him answers and peacefulness and a place to pour out frustrations with folks who responded differently than a loving best friend/wife.

It was worth it to both of us in both instances. 

That's all I know. 

My original post for the cancer support group was not at ALL to have like people who LOVED talking about cancer. I went and continued to go until they disbanded because UNLIKE THIS SCREEN, if I said "i have this problem" immediately 7 people told me what they did to elveiate it and I could ask another question IMMEDIATELY.

 

I'm telling you the doctors won't tell you evreything because if they did (one nurse told me this>>>) "if you knew what was coming you might not show up for all treatments."

I have never met anyone who had their tonsil cancer return but I have spoken to a few spouses where they died. I only knew one guy and the doctors did terrible things to him. Like removed HALF of his lower JAw. He had heart problems, was hospitalized for 6 weeks before he died.

But everyone esle survives, gets beat up and moves on.

In talking about "it coming back" one nurse at the radiology clinic told me that 1/2 of thsoe that cancer coems back (this clicnic did all kinds of cancer teatment, not just tonsils) do not finsih the second round of treatments.

I'm not sure I would either.

But again the reason to go to a support group WHILE getting treatment is to get real life answers form those who are on the other side. The group had 3 people like me-in the middle of treatment and 12 people who were 3-10 years out.

One lady had cancer of teh mouth, back of the tongue. They removed her tongue! Now they would just radiate.

David

RE: I think I'm dying

by JohnnyO on Thu Jun 21, 2012 04:29 PM

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Hey David,

Yes, I can see how a support group would be great for getting quick answers and answers to follow-up questions during treatment.  And once I feel recovered enough, I would be interested in attending a support group to help others going through treatment. 

But at this point, I'm hoping that this long thread will be helpful to those recently diagnosed; there's a lot of good stuff here! (aside from my whining)

RE: I think I'm dying

by Sdurnell on Sat Jun 23, 2012 04:23 AM

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On Jun 20, 2012 3:18 PM JohnnyO wrote:

Hi Susan - Actually, I'm not that young; I'm 50.

My issue with a support group is not that I expect that the people there would be older than me, per se; but that they would be in a different place in their lives than me:  retired, single, no young children.  Aside from that, my anxiety is best handled by going on with my life, being there as usual for my wife and kids.  A support group or therapy would just call attention to that which, frankly, I'm trying to forget.

The lingering side effects of treatment just call attention to my cancer, and the best way for me to handle those is to find out how best to treat them and make them part of my regular routing.  So, right now, my issue is this new side effect: lymphedema.  I just need to know what to do about it, how to avoid it; I don't need to talk about it.  Everything else, so far, is pretty much under control, and I shield my kids from all signs of my anxiety.

Yes, I fear the PET scans - they don't keep me up at night or anything like that - but doesn't everyone?

Johnny,

The only thing I fear about PET or CT scans is the copay and the "patient's obligation" on the insurance statement.  Well, that and reconciling the statements with the bills.  I am still having throat dilations, too, so I get bills from the docs--ENT, RO, GI, PCP, anesthesiologist--as well as the labs and pathology and imaging.  They are so hard to decipher!  When I was in treatment and later, trying to recover from the treatment, my husband handled all the medical paperwork, but now that I'm so much better I can.  And I do not like what all the costs are doing to our finances!  (But ever so grateful for the group insurance that makes the costs so much less!)

But I have no anxiety about the scans.  I have chosen to take things one step at a time during this whole ordeal, and to plan but not fret about what is coming up.  I view the scans as just the next step on this long journey, which will reach its first destination (at two years post treatment) next February, and its final one three years after.  In a way I look forward to them as each one marks another success and tells what the next step will be.  And so far, so good, so if anything my optimism is growing.

RE: I think I'm dying

by Dlynn1210 on Sat Jun 23, 2012 12:55 PM

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On Jun 20, 2012 3:18 PM JohnnyO wrote:

Hi Susan - Actually, I'm not that young; I'm 50.

My issue with a support group is not that I expect that the people there would be older than me, per se; but that they would be in a different place in their lives than me:  retired, single, no young children.  Aside from that, my anxiety is best handled by going on with my life, being there as usual for my wife and kids.  A support group or therapy would just call attention to that which, frankly, I'm trying to forget.

The lingering side effects of treatment just call attention to my cancer, and the best way for me to handle those is to find out how best to treat them and make them part of my regular routing.  So, right now, my issue is this new side effect: lymphedema.  I just need to know what to do about it, how to avoid it; I don't need to talk about it.  Everything else, so far, is pretty much under control, and I shield my kids from all signs of my anxiety.

Yes, I fear the PET scans - they don't keep me up at night or anything like that - but doesn't everyone?

Hi Johnny -

I honestly believe that as you get farther down the road, your opinion about support groups will change.  You are still like a deer who is just regaining your sight after being caught in headlights. 

Sweetie - two questions.  Have we (CC residents) helped you?  I think it is safe to say we have (that was our intention).  Do you think it has been easy on us to relive our experiences?  No, in fact, it has been difficult at times because none of us really love looking back at those dark days.  I do it because of Mark - the survivor on CC who was there for me every step of the way.  There were many others but Mark was my strength.  He had undergone treatment two years before and told me what to expect - and cheered me on telling I could do it.  He was able to forego chemo so bounced back quicker but he was preparing for a bike marathon two years post treatment.  This did wonders for my morale.  I come here for every other person who is diagnosed with this horrible disease - letting them know brighter days are ahead. 

You will learn to live with a new normal - your food intake will change a little, I've had three throat dilations to help with eating, I eat and drink a little slower now (which is a good thing), and I have a little lisp when I speak but all and all - I look at these side effects as war wounds - wounds I wear proudly because they are what I have to show for going through a battle - one that I won!

As for fearing scans - I wouldn't use the word fear (moreso one year and two years post treatment) but I do feel a little anxious when it gets close to the time for my yearly checkups.  I honestly experienced new symptoms the first couple of years post treatment which disappeared after I got my clean scan results.  Go figure - mind over matter!   

You may want to reconsider shielding your kids from all anxiety .  We learn how to walk and how to talk by watching our parents.  They will also learn how to deal with the bad things in life by watching how we deal with them.  Do we face them head on or do we hide from them.  I learned by watching my grandmother - she faced all trials head on with such a dignity and grace.  I felt her presence throughout my treatment even though she passed many years before.  I just read a comment on the brain cancer section that says so much about the cancer patient.  Follow the below link and read Josh's response - how he is dealing with his cancer and how he is handling things with his 8 son & 11 yr old daughter.  Now there is a man I hugely admire - and one who is setting a tremendous example for his children.    They are too young to fully understand so he and his wife have kept the final outcome from them but they are learning how to deal with the bad times when they come.  Johnny, I mention this only because it is how we treat adversities - and how our children see us handle them, that they will remember when they experience trials in the future.  As parents, we want to shield them from anything bad but when we can't, we can teach them how to deal with the bad times when thrown at us. 

I have often expressed how much I admire the people on the brain cancer blogs on CC - they are facing such a horrific disease but do it with such strength.  Josh is one of many that I have often quoted.  Their type of responses keep me going if I ever begin to feel sorry for myself.  It is a reminder that I only have things to be eternally grateful for. 

Diana     

http://www.cancercompass.com/message-board/message/all,66694  

 

 

   

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