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Amy M. Offline OP
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How do you guys battle the depression episodes. Usually I am fine, but once in a while - like today, when something wasn't going right - I get so depressed and just lose it - and cry for hours. It didn't help today that I had had no sleep for 24 hours though as I work 3rd shift and was trying to get things done instead of sleeping on my day off.

I don't want to go on depression medication or anything like that- just want to know if there are any tricks, or activities you do to take your mind off it. I live by myself & I've lost interest in most things I used to like. I have even lost interest in just keeping the place organized (although I'll admit I was never good at that) and keeping up on the cleaning and laundry etc...

I feel all I do is sit on the internet researching and researching and that certainly does nothing for my mood.

Sometimes I just feel so helpless and like my life is out of my control. Is this normal? Will this pass? I am less than 2 months out from my diagnosis - so it is still relatively new to me. How do you all make it through the first year without going crazy?


SCC Right Lateral Tongue T2N0M0 Dx 01/12/06, Surgery 01/25/06. Partial Glossectomy, Bilateral Neck Dissection - 22 lymph nodes - all clear. No radiation.
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Amy, Do you have anyone, a friend or relative, who can do some of the research for you when it starts to feel too overwhelming? It would need to be someone you could trust to get good information, of course. I ask this although the only person I would have trusted to do this, my husband, was less than helpful in this regard. But in retrospect it would have eased my mind.

You are in an especially tiring and overwhelming period right now, being unsure whether your tratment is done or whether you need radiation and all the worries that go along with that. I think people on this board who were just sent to radiation as a matter of course, distressing though that is too, may not appreciate how huge this can be when you feel like the choice is at least partly in your hands (whether it should be or not is not the issue--depending on what you do, it is).

When I was at that point, like you, I could think of little else. I felt very helpless and very out of control (it also didn't help that right after my glossectomy I was told I had stage I breast cancer, something I knew was a possibility but had been hoping the biopsy would come back negative--as they often do in breast cancer biopsies. So I had almost immediate surgery for that followed by and almost immediate post-surgical infection that shouldn't have happened but somehow did).

Anyway, if you don't have friends you trust to research for you, I bet you have friends who would be willing to come over and help you do laundry and clean. This can be hard for women especially, I think, to do. We feel like we should be able to take care of everything ourselves. When I was diagnosed, I had three women friends who are some kind of cancer survivor. ALL of them said to me, in one way or another, you need to realize that even if you aren't comfortable making it all about you, this is a time when it IS all about you. So take care of yourself. Ask for help.

You live in or near a large enough city that I'm sure there are cancer support groups, even if there isn't one for oral cancer specifically. Call the American Cancer Society and see what's available. In my city, there is a local nonprofit dedicated to helping women with breast cancer. They had a grant for 10 free therapy sessions for women facing difficult breast cancer. Actually if I had just had the breast cancer alone it wouldn't have been so difficult but anyway, they said I qualified and they referred me to a fantastic therapist who has had experience counseling people going through cancer (if you go to a therapist, be sure you find one with this experience).

Are you a member of a church or synogogue or any other group that might offer support informally? If so, see what they can offer in terms of help. Also don't forget your workplace. My union kicked in with all sorts of help--including tkaing a collection for some money that I used to hire a cleaning person when I couldn't handle the clenaing myself-- and my workplace also has an EOP plan that would have covered me for some therapy (except I would have had to switch therapists to use it and I didn't want to do that).

Once you decide on a plan of action from here--further treatment or not--I think you'll start feeling better. Nothing is worse than not knowing. But meanwhile, recognize that this is a HUGE life-flipping big deal and you don't have to do everyhting yourself but you may have to make some noise to get some help--keep making noise until you get yourself whatever help you need .

Nelie


SCC(T2N0M0) part.glossectomy & neck dissect 2/9/05 & 2/25/05.33 IMRT(66 Gy),2 Cisplatin ended 06/03/05.Stage I breast cancer treated 2/05-11/05.Surgery to remove esophageal stricture 07/06, still having dilatations to keep esophagus open.Dysphagia. "When you're going through hell, keep going"
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Amy M. Offline OP
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I was more thinking of looking for specific activities to keep your mind away from the cancer. I wouldn't have someone else do the research b/c I'd always think they weren't telling me everything and I would continue anyway. Stuff that doesn't require a lot of thinking or another person to do.


SCC Right Lateral Tongue T2N0M0 Dx 01/12/06, Surgery 01/25/06. Partial Glossectomy, Bilateral Neck Dissection - 22 lymph nodes - all clear. No radiation.
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Just a simple suggestion - I play solitaire - doesn't require a great amount of concentration, (which I don't have right now) but enough so that I don't have to think about anything else. I tried those Sodaku (Sudoka? - I don't know how to spell it), but those number puzzles that are popular right now, but they do require a lot of concentration (and a good eraser).
Other than that, I have 4 prayers that I say over and over (I guess a form of meditation) so if you have a favorite prayer or poem or something, repeating it kind of soothes your mind. I do this while I take a walk, or just when I'm sitting waiting on my husband to be treated. It helps. Maybe these suggestions will help you.
Michele


Michele, caregiver to husband, Jesse, SCC diagnosed 1/5/06 unknown primary, lf neck mass >6 cm. Chemo (Cisplatin 2x; Carboplatin & Taxol 2x) & XRT radiation 39X ending 4/4/06. Rad neck dissection 8.5 hrs 4/13/06. 30 HBO treatments Fall 2006.
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AmyM. Get outdoors-go to the zoo or a museum or an Art Festival- get on a bike and ride in a quiet park. JUst get out of the house and away from the internet. Amy


CGtoJohn:SCC Flr of Mouth.Dx 3\05. Surg.4\05.T3NOMO.IMRTx30. Recur Dx 1\06.Surg 2\06. Chemo: 4 Cycles of Carbo\Taxol:on Erbitux for 7 mo. Lost our battle 2-23-07- But not the will to fight this disease

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I finally gave into my need to research and find out everything (no matter how scary) about my cancer. We had a hurricane in my area during the time I was at your stage of this journey, we lost power for 7 days. My husband bought a generator so my laptop could stay operating, he knew how important it was to me to keep reading. Give yourself permission to research it, it helps.
Also, Amy makes a great suggestion..........go outside. That alone helped me SO much.


SCC Left Mandible. Jaw replaced with bone from leg. Neck disection, 37 radiation treatments. Recurrence 8-28-07, stage 2, tongue. One third of tongue removed 10-4-07. 5-23-08 chemo started for tumor behind swallowing passage, Our good friend and much loved OCF member Minnie has been lost to the disease (RIP 10-29-08). We will all miss her greatly.
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Minnie, I did the same in terms of giving in to my need to research. Doing that sort of thing, collecting information, sorting through it, drawing my own conclusions, is a strength of mine anyway so of *course* I'm going to want to use that strength to help myself when I have cancer. Or at least that's the way I came to see it.

Getting outside (I have a dog who needs a walk twice a day) was also important for my peace of mind. I also went to the movies a litle more often than usual--though I stayed away from the ones where someone dies young--as a distraction.

But Amy, I think it bears repeating that feeling the things you are feeling--including crying for a while-- is normal at this point. You're grieving over the loss of a life of health where you didn't have to think about the possibility of your own death very much. There is nothing like cancer to remind us how much we really don't have control over. That's not to say that you shouldn't fight off depression if you feel just immobilized by it--but the grief over loss of your former healthy-person life is something I think everyone goes through in some form or other.

Nelie


SCC(T2N0M0) part.glossectomy & neck dissect 2/9/05 & 2/25/05.33 IMRT(66 Gy),2 Cisplatin ended 06/03/05.Stage I breast cancer treated 2/05-11/05.Surgery to remove esophageal stricture 07/06, still having dilatations to keep esophagus open.Dysphagia. "When you're going through hell, keep going"
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Hi Amy,
Depression can get worse gradually without being noticed if not treated properly. My depression episode was diagnosed as the most severe one by the psychiatrist within 2 months' time and had to be treated with anti-depressants and daily psychological counselling in the hospital. Activities suggested by my friends didn't work at all because I was simply too reluctant to move around and lost interest in everything, both indoor and outdoor activities. What made my case worse was that I didn't have any support group (although I had very supportive family and friends)and even though the computer was easily accessible, I simply didn't have the mood to look at it.
Don't misinterpret me thinking that all the suggestions above are not helpful. On the contrary, they are all worth trying but if you feel that your depression still persists, I will suggest medical consultation asap.

Karen


Karen stage 4B (T3N3M0)tonsil cancer diagnosed in 9/2001.Concurrent chemo-radiation treatment ( XRT x 48 /Cisplatin x 4) ended in 12/01. Have been in remission ever since.
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Amy,

I'm sure that once you make that final decision about radiation or not, your will feel that you have your life back in control. It's such a shame that your HMO has screwed things up and you had to change yesterday's appointment.

After my surgery I had trouble sleeping and although I had never taken a sleeping pill in my life, I agreed to try some Ambien. It worked great and helped get me through the rough times. It did not affect me during the day and I experienced no drowsiness.

As far as the depression itself is concerned, you may have to give in and ask your physician for something to take.

Hang in there...things WILL get better. I hope it is real soon.

Jerry


Jerry

Retired Dentist, 59 years old at diagnosis. SCC of the left lateral border of the tongue (Stage I). Partial glossectomy and 30 nodes removed, 4/6/05. Nodes all clear. No chemo no radiation 18 year survivor.

"Whatever doesn't kill me, makes me stronger"
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what helps me the most when I'm feeling overwhelmed or down is to rember that I am not just a walking mass of cancer cells...I am a person who happned to have some cells in my body mutate for whatever reason and I'm doing what I can and have to to stop that. But beyond that issue I am still who I was before it happened, I still have a whole life outside of this issue, and the world is still an amazing a beautiful place. Then I focus my thoughts on something that is particularly amazing and beautiful...like my girlfriend and how much she loves me, or the puppies playing outside...or some music that I like that moves me, whatever it atkes or is available at the time. Doing this helps me lift the depression when it gets to me.

...its Ok to feel down and bummed sometimes, but when it gets to the point where you can't snap out of it and you are not functioning and not enjoying life then you realy need to talk to a professional. its a normal and expected part of any large life issue such as your are experiencing...

all my best
david

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amy,
I have just been diagnosed with scc, it was in my tonsils which they removed 8/4/06. But it has spread to my lymp nodes. Now I have to go thur chemo and radiation. I'm scared but I trust in God. I know how you feel you must do all the research cause I'm the same way. But take time to play a game, go for a walk, talk to somebody who can encourage you, read (not on your cancer), some good books are Spiritual faith, prayer books, ect. A great place to play games is on pogo.com... it's a great place lots of games. I'm just starting and I feel my life has been just turned upside down.. But I also have 3 children the youngest is 4. if they see my fear they will fear. So i spend alot of time doing things with them like painting, scrapbooking, and reading the bible. God Bless you all and your in my prayers.


marie
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Hey Amy,

I'm a psychologist: A happy-go-lucky guy if ever you saw one. I'm the last person I ever thought would start taking an antidepressant. I thought I could use my vast education to get me through anything.

Bottom line: I regret every painful day i didn't take Zoloft. I'm not ashamed of a damned thing, especially doing something that helps me not hate life. Heck, I'd wear a Zoloft t-shirt if I could get one.

Just one formally macho guy's experience. Your mileage may vary.

Teamshrink


Age 46; SCC BOT T3N1M0l dx 9/06
Cisplatin x3; radiation x42
Completed tx 10/31; Selective neck dissection 12/06
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Hi Amy, I had 2 horrible bouts of depression after my surgery. First about 3 weeks post and I was on an anti depressant. I couldnt go back to work and I cried all of the time. I swiched to another anti depressant and felt better after about 2 weeks.

Than about my 6th week of radiation I got so down again. I cried and slept all of the time. Although I was back at work, anything I tried to do was too much. My Rad Doc uped my med and about two weeks later I felt so much better. I believe that anti depressants do help people whose brain chemistry has gone aray for whatever reason. Please check into this as it may very well make you feel better.

Prayers,

Molly

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To mwprincess1: Hi Marie. Guess I missed your other posts, so I need to say "HI" and tell you that your attitude sounds great and I really admire the time you are spending with your kids. I know that takes alot of your energy . Hang in there.
To TS and Molly[and anyone else who is interested] antidepressants are,indeed,a good thing and I would recommend you ask your immediate caregiver-if he\she is a spouse or close family member - if they might need to think about taking them also. We are all in the same fight. Amy


CGtoJohn:SCC Flr of Mouth.Dx 3\05. Surg.4\05.T3NOMO.IMRTx30. Recur Dx 1\06.Surg 2\06. Chemo: 4 Cycles of Carbo\Taxol:on Erbitux for 7 mo. Lost our battle 2-23-07- But not the will to fight this disease

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Amy, click onto this site. Remember, cancer doesnt have us, we have the cancer! This helps me sometimes when im feeling overwelmed about all this( www.thesurvivormovie.com )hope this helps you! God Bless You.

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Hi. Thanks for all of the advice. I can't believe that it has already been 5+ months since I initially posted this question. I am doing much better now, and no longer have daily depression like in the beginning. I was surprised to see this thread active again - but glad everyone hear is so helpful. Thanks again.


SCC Right Lateral Tongue T2N0M0 Dx 01/12/06, Surgery 01/25/06. Partial Glossectomy, Bilateral Neck Dissection - 22 lymph nodes - all clear. No radiation.
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Amy - Glad to hear you are feeling better. Knowing that you are better, I'll use this thread to scramble aboard my soapbox... (begin rant)

Diabetics are WEAK because they take insulin! Right? The big sissies. And blood pressure meds..HAH! What a joke - they are just WEAK to take those stupid pills. And how about the big babies that take thyroid meds??!! And then there's vitamins and aspirin and stuff...... Bunch of wimps. Pills are for wussies. Right?

Depression is a physiological / biochemical process in the body. If you don't expect diabetics to "just get over it", then don't expect people with depression to "just get over it" either!

Nancy Reagan was the famous face for the national "Just Say No" campaign against drugs back in the 80's. It was a ridiculous failure (not Nancy's fault). (now the joke part..) When the Reagans left the White House, Nancy did advocacy for National Depression Screening day - coining the slogan - "Just Cheer UP". More recently she is helping with the California coalition on homelessness - and the slogan is: "Just buy a house". Silly.

The National Council for Mental Health estimates that 55% of the country's population suffers depression that would benefit from medication. Anti-depressant meds do NOT make you feel better. They stablize your appetite, your sleep patterns and your ability to concentrate. That's it. Only the massively uninformed resist anti-depressant meds as a sign of weakness. (end rant)

Thanks for the space Amy. I feel better now!! Tom


SCC BOT, mets to neck, T4.
From 3/03: 10wks daily multi-drug chemo,
Then daily chemo with twice daily IMRT for 12 weeks - week on, week off. No surgery. New lung primary 12/07. Searching out tx options.
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I seem to be dealing with depression more than the cancer. Things that I have done, went to doctor put me on wellbutrine, I started riding bike, I went back to flying RC, tried to do alot of the old things I enjoyed found some I was unable to, became depressed with that. This web site has been good for finding new information, finding that your not alone is uplifting. For me this whole thing, from finding out you have it, what to do, pulling teeth, surgery, chemos, radiation, keeping up to the bills, wife left me, oldest boy got in trouble with the law, sister past away, this all since may 18 2005., has been a little much. I went to counseling with my wife, the guy said I was depressed all I could do was laugh at him. Things are getting better my wife and I are back together, the family is doing well. Im still somewhat depressed
but Im alive, able to spend time with my family.
Hope by sharing this with you will help anyone
get help for the depression, as soon as they can, or it can get out of hand.


Tongue Cancer, stage 4, spread to neck/ Radical neck, 3 chemos, 33 radiation. 5-18-2005
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I cannot emphaasize enough how important this issue is to head and neck cancer patients. A study just published shows a four times increase in suicides in our patient group. Don't let any of your loved ones or yourself believe that this can always just be fought through on your own. Get a professional involved. http://www.oralcancerfoundation.org/news/story.asp?newsId=1476


Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant.
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At a HNC conference I attended in May, a psychologist from Hopkins spoke on depression and mood. He was careful to distinquish between clinical depression and what he termed "being disheartened", the latter a more transient stage that is expected with any major life-changing event but which generally resolves on its own within a few weeks. He emphasized the importance of getting professional help and also, criticized doctors (including those of his own institution) for not taking this facet of treatment more seriously. Even by just asking the patient AND any caregivers about the patient's emotional state and then, offering help. Hopkins has a social support program but it is not part of the mainstream treatment -- that is, you are not given an automatic appointnment as you are with dentist, swallowing therapist etc. -- and you have to be proactive in seeking this help. (At least that was the case last year but I hear they have changed this).

One thing which can helps boost patient morale -- outside of professional assistance and/or needed medication -- is to try and plan for some enjoyable event after treatment ends. Not immediately, as you will not be feeling great for some weeks or months, but have something on the horizon. A trip, cruise, show etc. -- something you would have done as part of your "normal" pre-cancer life.

For example, we planned a birding trip to Mexico for three months after Barry's treatment ended. He had been very worried when first diagnosed, and after reading all the horror stories on the 'net about post-treatment disabities, that he would never be able to resume his major hobby of world travel & birding. We wanted to try and get out of that mindset and get "back to life." Barry spent a lot of time on the internet researching places to go in Mexico, making arrangements and, as a consequence, getting his mind off cancer. We invited a friend along as I thought Barry would get tired in the afternoon and would want to rest, and my friend Sally and I could go out birding together. Well, Barry didn't get tired (Sally did!) -- he was out all day and had a wonderful time -- and came back feeling like his old self and with the knowledge that he *could* resume his normal activities. This did a great deal to eliminate his "disheartened" mood and get him back to his usually happy self.

Gail


CG to husband Barry, dx. 7/21/05, age 66, SCC rgt. tonsil, BOT, 2 nodes (stg. IV), HPV+, tonsillectomy, 7x carboplatin, 35x tomoTherapy IMRT w/ Ethyol @ Johns Hopkins, thru treatment 9/28/05, HPV vaccine trial 12/06-present. Looking good!
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