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#51355 12-18-2005 08:59 PM
Joined: Jul 2003
Posts: 235
didier Offline OP
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I don't know if it's the holidays or what, but I'm falling into a funk of, I guess, a little bit of depression. I feel like I'm stuck in second gear. I can't seem to accomplish anything, I've been procastinating, I think of how I could have done things differently, have twinges of guilt, falling asleep has become difficult - and once I fall asleep - I don't want to wake up. WTF. Making plans isn't a priority, I'm having some issues dealing with the first anniversary of my dad's death - some of which may be compounded by this one provider that keeps billing me even though they have been told ad nauseam that they need to bill hospice. My mom's progress has been somewhat stagnant and I wonder if things will get any better for her. Yes, she has her life. We fought like hell for that, but the quality of life isn't of much quality. She's still sleeping the majority of the day, still tube feeding after two years post treatment, etc. She's not the same person, mentally or physically. I just don't know. We were told this would probably be the hardest thing that she'd ever have to go through, but I guess I didn't comprehend the extent and ripple effect of the disease, and how doctors interpret success versus how I interpret success. I knew the extent of her disease was serious, very serious - but I suppose I didn't realize that life would never be the same for us. I'm just having some difficulty adjusting. Fortunately I have more good days than bad, but this last month or so has been tough. Lately, I just don't look forward to anything at all. My drive and ambition are at a standstill. I don't like this feeling and I need to kick myself in the ass and stop feeling victimized. I'm having a little trouble getting over that hurdle right now though. Maybe I need to learn to process information differently. Life is difficult at times and I thought I was getting back on the saddle, but my mind is getting the better of me right now. I was talking with someone in the building where I live and I guess I shouldn't complain given his story. The poor guy lost his dad and brother within six weeks, then his wife left him and then his house burnt down. He's a pretty upbeat guy given what he has been through, I've got to learn to roll like that. There's so much to live for if I can jump start myself, but I just don't feel excited about anything at the moment. Why the hell am I having these feelings? How can I turn this experience into anything useful? Does anyone else experience the periodic blues? Any suggestions? Thanks.
Dave


Mom's caregvr. DDS failed to dx 01/03. Dx Stg IV SCC 05/03. Induct. chemo, IMRT, 5FU, H, Iressa, Neck disect, radiation. Dad's caregvr. Dx 01/04 Ext. Stg SCLC. Mets to liver/bone 08/04. Died 11/12/04. Mom tongue CA dx 06/13, hemiglossectomy (80% removed) 08/13. Clean margins and nodes, but PNI. 6/15/15: Tongue CA at base of remnant tongue. Declined further tx; hospice.
Died 10/13/15. What a long and difficult journey.
#51356 12-19-2005 06:00 PM
Joined: Apr 2005
Posts: 2,676
JAM Offline
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Dave, please give yourself a break![and a pat on the back]. You have been through a hell of alot of "real life" the past couple of years. Taking care of 2 family members with cancer is beyond belief! My guess is that you are emotionally worn out and no wonder! I think the best advice I can give you is to schedule a couple of weeks away somewhere, alone maybe, and lie in a hammock and sleep, or ski the mountains or cruise the Carribean. Whatever will allow you to rest and rejuvinate. It's so tough to watch your Mom suffer, but there is nothing you can do to fix that. So take care of yourself, so you will have the energy to take care of her. I am in awe of your strenght through out all of this. 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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#51357 12-20-2005 02:38 AM
Joined: Aug 2005
Posts: 22
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Posts: 22
Dave,
I know I feel the same way sometimes, but it doesn't seem to last too long. Sometimes I just feel so sorry for us and can't believe how much life has changed and really will never be the same. I have recently realized that I usually go into a little depression after we are "out" somewhere. Seems like when it is just my husband, my son, and myself, we are in our safe little isolated nest, everything sooms ok. When we're out I think I really notice just how different we are. But I have recognized this and it is gettng better. I think you just have to let yourself feel as you do(as long as not too despondent) and be patient. I'm not sure why, but I do think it gets better. I think that in the situations where the effects are so life-altering and permanent, we must just get used to it, and therefore deal better with it. But I think that takes time and is an ongoing process. I guess it's like someone in a wheelchair, who knows the changes are permanent and unbelievably life-altering, but eventually life is ok. I know when I look at my husband and realize he will never swallow or speak understandably again it can be crippling. I just try to take it one day at a time and look for today to be a little bettet than a few months ago. I do know that for both of us today is a lot better than even 2 months ago. I wish you well and hope you have a peaceful holiday season. Try to be kind to yourself and remember it's ok to be sad life has not been fair to us, but we will go on-after all, we have come this far.
Sincerely,
Doreen


Stage IV scc base of tongue/larynx
Total glossectomy/partial laryngectomy/radical neck dissection 4/05 followed by chemo and rad. Tonsillar Non-Hodgkin's lymphoma 1996(cured and not related)
#51358 12-20-2005 04:38 AM
Joined: Nov 2005
Posts: 105
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Joined: Nov 2005
Posts: 105
Dave,

You've had a lifetime of trouble in a short amount of time. You need to take care of yourself. When I was in the midst of my surgeries and treatments, my ENT always made a point to seek my wife out and tell her to take care of herself. He went out of his way to make sure she didn't get to run down. When you get exhausted both physically and emotionally, you need to re-charge yourself. I agree with what JAM wrote. Do something that interests you. Take a trip, take your mind off of your problems for a while, even if it's for a few hours or a day. Know that you are not alone in this. Many of us here, and our families have had the same feelings that you have. Keep your head up. We can handle anything that comes our way.

John


SCC base of tongue. Diagnosed as stage IV, Sept. '04. Partial glossectomy, Radical neck dissection left side, 37 Radiation sessions, Chemo x 7 weeks. Finished treatments January '05. Cancer surivor!
#51359 12-20-2005 05:50 AM
Joined: Sep 2004
Posts: 153
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Posts: 153
Dave,
Even if you can't take a trip - maybe an afternoon or day our would help. I can't imagine your exhaustion. My brother's battle only went on a year and I was not the primary caregive and it drained me of everything I had. Please know our hearts are with you. Can someone help you out for a day? A friend or relative? Take up those offers of "anything we can do to help". People usually mean that - they just don't know what to do. As for the blues - I've found they are like the waves of the ocean - and everynow and then a big one comes along and knocks us off our feet. But, it will recede and we will pull ourselves to our feet again and stand even more firmly against the constant pounding of the smaller ones. I wish you and your family peace.
Tonya


Sister of 32 year-old oral cancer victim. Our battle is over but the war rages on. My brother passed July 26, 2005. He was a smokeless tobacco user.
#51360 12-23-2005 05:35 PM
Joined: Jun 2004
Posts: 155
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Joined: Jun 2004
Posts: 155
Dave
There is not much to add except to agree with what everyone has said especially Tonya. Please remember to take care of yourself. I am sure your blues are mostly related to the holidays the expectaions of how we are supposed to feel are all but ridiculous and even when we rationalize it they still can creep up on us. You are grieving and you are entitled to. Remember it is process with ups and downs good days and bad. Despite all you have been through you seem to have found a comfort zone in which you can function and now here is all this extra happy jolly and to do...The reality is no matter what culture or religion you are what this season is really all about is simply a celebration of light coming into our lives and celebrating the end of darkness. By the birth of a savior, the miracle of a lamp staying lit, the end of a season of fasting or the change in the solar cycle and the lengthing of the days....It is pretty universal and put in place to remind us that there is goodness and hope in the great design. The rest of the stuff is just what we make it. Even a few stolen moments can help to keep you going so please feel free you have our permission to steal take some down time for yourself...even if it is just an hour to take a walk, read something frivolous, just think and dream about the future and that trip to where ever you would like to be or have a plain old fashioned good cry. BE EXTRA GOOD TO YOURSELF..You have already proven what you are made of, you have done your parents proud and well. You deserve to be HUGGED not only by us but by yourself. Peace Denise


Caregiver Husband Bob SCC tongue t2nomo Partial Glosectomy/neck disection 6/04 rad ending 9/23/04
Osteoradio-necrosis of the Mandible (ONJ) DX 6/09 Surgery 7/2/09 mandible resection/ several teeth extracted/ neck dissection NO FLAP and aggressive antibiotic therapy.

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