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#94447 04-27-2009 09:27 PM
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I find myself more and more coming to this site. Whether at work or at home, I am searching. It's almost been a year since my Jorge's passing and I look for him here. I wonder what his fears were, nod at things I understand, laugh at many playful comments and recreate the horrible days. I have tried to push it all away. To stop being angry. To feel some comfort. I do...for a moment. I come here for strength and peace. I don't know what it is exactly that I am searching for but I know that I am not the same. In the end, I don't want to be happy. Life goes on, so many say. It hurts...like I have never felt hurt. I rejoice at everyone's great outcomes and clear findings and I cry with those walking where I walked. I sit and read and feel as though there were something...to be done. This horrible "thing" has changed me and I question many things. It is a deep heart wrenching pain that no one seems to understand....until I am here. Why? Why can't I heal?


Brother diagnosed SCC August 2005, radiation and chemo- 2 rounds, total glossectomy Sept. 2007, passed away May 21, 2008
"Everyday is beautiful" he stated on a cold and foggy Chicago winter day.
little sister #94450 04-27-2009 09:52 PM
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Hi there- I think the biggest hurtle to get over when someone close to you passes away and especially when that person had to endure a painful and long illness is to accept that it has changed you forever. It has opened your eyes to a different side of humanity...You have seen that sometimes things do not go as planned and that terrible thing can happen to wonderful people and that life is so precious. Its hard to accept that things will never be the same. In time it will be less sad and painful but that loss doesn't go away. You will always miss him but one day soon you will find a way to channel these feelings of sadness into something else. I come here too a lot and just try and help people. I feel lucky to have survived and it keeps me from feeling sad about what happened. Its a terrible thing you witnessed but maybe some sort of transformation happened. I wish that your brother had gotten better and survived.
Not many people have to deal with the death of a family member in the prime of thier life and from a very dibilitating cancer
In time you will find a way to channel the pain. Its so hard to do though.I'm glad that you come here for comfort. Its healthy to seek support. This is a sad time - you are still working out all that happened.

Thinking of you.

KATE



Tongue Cancer T2 N0 M0 /
Total Glossectomy Due to Location of Tumor

Finished all treatments May 25 2007
Surviving!!!
misskate #94451 04-27-2009 11:26 PM
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Hey there

its a while since we spoke sweetie and i am not surprised to read your post at all.
I am just packing my bags to go and stay with my mum because of the same things.I feel as if i have gone backwards just recently and find old destructive habits resurfacing because my heart is heavy and my emotions all over the place.Spring and new growth seems to just accentuate the feeling of despair that robs life is over,and the sunshine and the flowers are almost like salt being rubbed in to a wound that doesn't seem to feel much better even after 20 months.Like you i find being proactive for others walking our path,is very beneficial,but as soon as i close the laptop its still a big empty room and a big empty heart.

Its difficult to write this here as its so negative for the carers who have the worst to face,but sometimes it is so hard to keep inside and you think no one understands.Just like patients in recovery you just keep wondering WHEN will this get better?


Hope it helps to know you are not alone.

love and hugs liz

Last edited by Cookey; 04-27-2009 11:28 PM.

Liz in the UK

Husband Robin aged 44 years Dx 8th Dec 2006 poorly differentiated SCC tongue with met to neck T1N2cM0 Surgery and Radiation.Finished TX April 2007
Recurrence June/07 died July 29th/07.

Never take your eye off the ball, it may just smack you in the mouth.
Cookey #94457 04-28-2009 03:57 AM
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Little Sister- I've been learning that sometimes we have to put the depressing thoughts in a compartment in our minds that we can and will visit but not dwell on. Put it on a shelf that you can go back to but not stay there permanently. Your brother is in a better place and you need to try and heal. Believe me, I cry at the drop of a hat and spiral down on a regular basis but's it's not healthy for you to stay in that place for too long. Your brother would want you to think of him with a smile rather than sadness. I think that with time we will bw able to bring up the happy memories more often. You owe to to yourself-you've been through a trauma and that's hell enough for now.

Sue


cg to husband, 48 Stage 1V head and neck SCC. First surgery 9/07. Radiation and several rounds of chemo followed. Mets to chest and lungs. "Life isn't about waiting for the storm to pass, it's about learning to dance in the rain." Went home to God on February 22, 2009.
suemarie #94465 04-28-2009 05:23 AM
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I would like to encourage you all to seek grief counseling. Grief is absolutely normal and good counseling can help you with balance, and allow you to process what has happened. The grief process affects survivors too.

Please search on the web for a wealth of sites and information.

Take care


Mark, 21 Year survivor, SCC right tonsil, 3 nodes positive, one with extra-capsular spread. I never asked what stage (would have scared me anyway) Right side tonsillectomy, radical neck dissection right side, maximum radiation to both sides, no chemo, no PEG, age 40 when diagnosed.
Mark #94466 04-28-2009 05:53 AM
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You posters who console others are truly beautiful people. You recognize people's gripping, stagnating pain and the right words just flow out to aim them the right direction, because you have been there yourselves and you yearn to help them thru it. Your hearts are bigger than all this hideous disease brings.


Husband: 3 SCC gum and cheek cancers 2002, 2005, 2006: surgery only. Scans clear after removal of small, well differentiated, non-invasive cancers. No radiation. 4th SCC lip diagnosed 4/13/07 - in situ, removed in biopsy. More lip removed 2/8/08 - dysplasia. 2 Biopsies 3/17/09 no cancer (lichenoids)
little sister #94468 04-28-2009 06:14 AM
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Little sister

Perhaps we never quite heal from such tragic losses. I know that not a day goes by that I don't miss my little Brother, Charles who died way back in 1987 as one of the first AIDs victims. My sister still misses him too. It's all right to be angry, to seek comfort and recognize that we are forever changed.
What does concern me though is "In the end, I don't want to be happy". I have no doubt that Jorge would be horrified to hear you say that especially if he thought that he caused this. Everyone is different, but my sister and I have finally found out that the best way to honor our brother's memory is to live life as fully as possible. He was always showing up at places announcing "party of one" although the end was horrible and very painful. Ask yourself what Jorge would want for you - and then try to live that way.
Best of luck and good wishes to you
Charm


65 yr Old Frack
Stage IV BOT T3N2M0 HPV 16+
2007:72GY IMRT(40) 8 ERBITUX No PEG
2008:CANCER BACK Salvage Surgery
25GY-CyberKnife(5) 3 Carboplatin
Apaghia /G button
2012: CANCER BACK -left tonsilar fossa
40GY-CyberKnife(5) 3 Carboplatin

Passed away 4-29-13
little sister #94470 04-28-2009 06:19 AM
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Dear Little Sister,
I am so, so sorry that you are in such pain. What if you grant yourself permission to take one uninterrupted hour to quiet your mind, breath deeply, and dwell on your brother's individuality rather than events and surface noise. During this time, accept the pain and ask what it is trying to tell you. Have paper and pen, and just start writing in total confidence that no one else will ever read it. I know from my own experience that pain communicates, and it doesn't go away until we listen. My shrink really helped me get to the message -- when I was at the bottom of a dark pit. That totally new perspective of a trained professional focused on ideas that I had missed. Feeling cheated, feeling guilty, feeling unworthy, feeling angry -- they all added up and pointed to my need for finding ways to turn my life around. I am much better now, and I found that medication helped me get back out of the black hole. Meds are a huge help when a doc says we need them. Please talk to your pain and let it talk to you, and find an awesome shrink, too. If you need help finding the "right one" for you, let this forum know so people can offer recommendations for you. We are everywhere :-) And do know that we are with YOU, whatever you are going through. Please let us know how you are doing, okay?
With a big hug for you,
Carol


Non-smoker non-drinker, 50 when diagnosed 9/11/06 stage IV scc of oropharnyx, malignant lymph nodes both sides of neck. Cause=HPV16. Daily chemo & daily IMRT for 7 weeks. In 2 clinical trials at Johns Hopkins, good results. Peg tube out March 07. Update September 2014: gratefully in good health!
Carol Kanga #94484 04-28-2009 08:50 AM
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We can feel your pain with you lil sis. I have a feeling you have a deep feeling for us because you went thru it with your brother and connected with us . We are your family and probably will continue to be so or so I hope. You and your students will always be a part of my life after all the prayers and boosting you gave me. Gonna love you all forever.


Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
EzJim #94548 04-28-2009 08:07 PM
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I feel as if I am on the verge of breaking and feel ashamed knowing that I should count my blessings. I wrote this not to...vent,complain or sound like a "victim" but more or less to share my voice which has been silenced. My beautiful niece, nephew and parents rely on me to stay strong. Here you all understand and I can write and not sound crazy although I sometimes wonder if I am and it does scare me. Kate and Liz I feel like a have you both on either side of me. One who has experienced and one who has witnessed. Your words comfort me. Sue you are right and everyone around me thinks I have been handling all of this quite well but darkness encompasses me. Morbid? No. Reality? Yes. Thank you for reminding me not to stay here too long. Charm thank you for sharing. A brother is something much more than just a sibling. Jorge was my rock, my friend, the one who made me laugh and the one who p----- me off. We shared so much and it hurts not to be able to pick up a phone and talk. Maybe , when I say I don't want to be happy is because I have been pretending too long and I can't anymore. I don't want to be happy in that way but it has been an awful long time since I have been happy in my immediate family that I don't know how to. Believe me my husband and children try and I, at times, follow along. Carol I will try. I will. I am afaid to lose control but I will. Jim, Thank you. A couple of boys in my class asked me how you were doing after they came back from lunch. They knew I was online. They were happy to hear you were doing well. Thank you all for listening. I must continue to heal and I don't know how I would have done it without you. I need to learn and you all are the best teachers.

Noemi


Brother diagnosed SCC August 2005, radiation and chemo- 2 rounds, total glossectomy Sept. 2007, passed away May 21, 2008
"Everyday is beautiful" he stated on a cold and foggy Chicago winter day.
little sister #94570 04-29-2009 04:26 AM
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You are such a great young lady and have lived thru one of lifes toughest challenges that it throws at us. THanks for you and your class. It seems you have the youir students aimed at the good and truthful .


Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
little sister #94596 04-29-2009 12:49 PM
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In the words of your brother and your signature.
"Everyday is beautiful"

Keep that at the forefront of your mind to honor his memory. I know this isn't easy at all. I would be absolutely devestated if I lost my sister. My heart would be broken. We share so much of who we are with siblings. Our childhoods-- kids shape each others personalities and can make each otehr laugh more and piss each otehr off more smile than probably any one else in your life!. It can be a very special reationship deeper than most of your friendships.... and it sounds like your was brother this way to you. It sucks that he went through what he did and that he isn't here with you. I wish that he was. He sounds liek a wonderful special person.

I think just living each day in honor of his memory would help ease the pain. He would want you to be so happy and fulfilled in your life and not sad and depressed. Easier said that done of course.

take care and I hope you start to feel a littl ebetter soon.
focus on things that make you happy and thing that made jorge happy smile

K


Tongue Cancer T2 N0 M0 /
Total Glossectomy Due to Location of Tumor

Finished all treatments May 25 2007
Surviving!!!
misskate #94677 04-30-2009 11:29 AM
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So many people on this board seem to know just the right things to say, I could never hope to be so eloquent. I would just like to say that I truly feel for you and wish you to find happiness in your life. "In the end, I don't want to be happy" sounds to me like "survivor's guilt" which I fully understand. I pray you find the strength to go forward.


David R. 65 yr old male non-smoker, light drinker, stage 3 or 4, depending on which doc you ask, scc rt. tonsil, 2 nodes, 7 weeks radiation and chemo. No surgery. Teatment ended 3/20/08. PET scan 8/08 showed no cancer.
And now, as of oct, 2010, caregiver to wife, Linda, with breast cancer.
May, 2013, Linda diagnosed with stage 3 ovarian cancer. Enuf already.
little sister #94678 04-30-2009 11:53 AM
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Dear Little Sister: I'm not as eloguent writer as others, but I can say that I'm glad you could post your pain on this site, and I hope it helped to release some of your anguish. The feeling of loniness and lost never really goes away, but hopefully in time the pain will lessen and your memories of your brother will bring joy and laughter.

I would like to recommend a book (fiction) that was very helpful to me, not only because of the ordeal I'm facing, but with all the pain from the past. The book is "The Shack", by William P. Young. It's current, and in bookstores now. It is a wonderfully spiritual book. I believe it may help to answer some of your questions. I hope it helps.

Take care, and please visit us to let us know how you're doing.

Sandy S.

Last edited by SandySt.; 04-30-2009 11:56 AM.

Sandy 56, BOT SCC Biopsy 1/21/09 Stage 3, T3NXM0.
Finished 3 cycle induction chemotherapy 4/7/09. (Chisplatin, 5-fu and Texotere). Re-staged 4/20/09,(very successful.) Will start Carboplatin/radiation 2 Gy/5 days/7 weeks (Tomotherapy) starting May 4th. Finished 6/22/09.
OCF member/supporter

SandySt. #94690 04-30-2009 02:15 PM
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Dear Noemi,
What a pretty name. I believe you may be suffering from Depression. A place where you are unable to see the way out. 28 years ago I was diagnosed with Reactive/Rheumatoid Arthritis. I had a severe case unresponding to drugs and I had to quit working for 3-6+ months. I was a single mother with 2 children and no childsupport. I had family support, but it didn't matter. I didn't tell anyone my feelings until after I started planning suicide. I felt my children would be bettter off without me and my disability. Luckily I told a Dr friend how I felt and he arranged for a Psychiatrist to talk to me. He put me on medication and its amazing how much better I felt. Between talking with a trained person and medication, I was able to find solutions.

You have reached the point in your grief for your brother that you need a trained person to help you. Find a person you like and I promise you that things will get much, much better. You took the first step when you posted your feelings here. The next step is getting professional help. Do it for yourself, your husband and your children. God Bless

Sweetpea #94942 05-05-2009 11:16 AM
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"You have reached the point in your grief for your brother that you need a trained person to help you. Find a person you like and I promise you that things will get much, much better. You took the first step when you posted your feelings here. The next step is getting professional help. Do it for yourself, your husband and your children. God Bless"

Hi, Little Sister -

This is so true. And getting through, not over, grief is work - the hardest work you will ever do. You can do it, with help.

"Companion Through the Darkness," by Stephanie Ericsson, helped me after my husband died suddenly.

Tom Golden's story/parable, "Swallowed by a Snake" was a tremendous eye-opener. I would recommnend it to anyone who has experienced trauma, grief-related, or not. It taught me that grief *had* changed me. It would always be with me, but eventually, I was no longer part of "it": "it" was part of me.

After my husband died, I didn't think I could ever find joy in my life, but I have. It took several years, and I still experience great sadness at times. But I know I can get through it.

There is no right or wrong way to grieve because we each grieve differently. Acknowledging your feelings is an important step.

Good luck,
Marlene


In the end, I don't want to be happy. Life goes on, so many say. It hurts...like I have never felt hurt. I rejoice at everyone's great outcomes and clear findings and I cry with those walking where I walked. I sit and read and feel as though there were something...to be done. This horrible "thing" has changed me and I question many things. It is a deep heart wrenching pain that no one seems to understand....until I am here. Why? Why can't I heal?



Marginal mandibulectomy 6/17/08 resulted in DX of Stage I SCC - gingiva (3 mm) right mandible, buccal side. Clear margins. Occasional social drinker. Smoked last cigarette in 1979. Clear pet: 12/08; 7/20/09. Yay!
Marlene41 #94954 05-05-2009 05:31 PM
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I have read the post on this forum a few times and each time they move me.There is such caring, so manyh feelings, such sympthy as I have never seen in one forum and they are so deep. It's no wonder I love this place ane the people that are here. This is more love than I have ever felt from anyone.


Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
little sister #94959 05-05-2009 07:16 PM
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Little sister,

I am too a little sister and it has been almost 3 years since my big brother passed away. I cry all of the time. I don't want to burden my friends and my husband all the time with my feelings, so I will go into a room and look at all of his things, pictures and cry by myself. I know what you mean about not being happy all the time, it probably is not healthy to do, but I feel closer to him when I hold his things and look at pictures of how he was. He was it for me, the coolest person, the smartest person, the most handsome person and the loss I feel is overwhelming at times. Then I go upstairs and work on my memorial walk for him and I feel so much better. I am keeping his memory alive, honoring his life and trying to make a difference in the world by working for OCF. I could not help him while he was alive, but can help others from dealing with oc. Maybe counseling is a good thing for you, to vent your feelings. Maybe become involved in an organization that he loved. Carry on with something he loved to do. YOu know sometimes it so hard when I come to these boards and read others stories about losing someone to oc, but then I know I can offer my words and really know what they are going thru.

This is truly the hardest thing I have ever had to deal with in my life. I don't think there is a perfect answer, there is not a date that will say "this is the day you move on", but for me helping others is the way to go.

I hope you find some peace soon.

Susan


Susan Lauria - OCF Director of Events - Always looking for volunteers to help spread the word about early detection! Contact me if you can help!

*Brother passed away from tongue cancer in 2006 at age 47, was co-caregiver, he was non-smoker/casual drinker

LETS MAKE ORAL CANCER HISTORY!
little sister #95566 05-15-2009 07:25 PM
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Little Sister, I just want to let you know that reading your posts has made me realize that I need to call my brother more often. We do not always see eye to eye on everything, but I do love him. I need to make sure I stay in contact with him. My family does not live that close to me so it is hard, but I am going to make an effort to call him at least once a week. Will you help hold me to that?


Angelia
31 at Dx.
DX: 4/30/09, 10/21/09 SCC on floor of mouth,
T1NOMO, T2N1M0
TX: 39 IMRT, 8 cisplatin 11/30/09
PET/CT: 11/03/09: Lymph node involvement
PEG/PORT: 11/09
TX end: 02/01/10
PET Scan: 04/05/10 clear
PEG Out: 06/21/10
Biopsy: 12/23/10: fibrosis
HBO: 01/04/11 - ORN
Baby girl born 11-30-12
walknlite #95611 05-16-2009 07:12 PM
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Angelia,

Do you ever stop and wonder why things happen? You find purpose and it times it doesn't make any sense. My pain, it helped someone realize something important...and the pain is a little less intense because of that. Everyone here helps...some just don't realize...we all need it though. I would like it very much to keep in touch. I hope your appointment goes well. Please let me know.

Noemi


Brother diagnosed SCC August 2005, radiation and chemo- 2 rounds, total glossectomy Sept. 2007, passed away May 21, 2008
"Everyday is beautiful" he stated on a cold and foggy Chicago winter day.
little sister #95612 05-16-2009 07:29 PM
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Bye the way I am also a little sister. Someone was telling me that you are a teacher? What age do you teach? I am a special ed teacher and love every minute of it, well almost.


Angelia
31 at Dx.
DX: 4/30/09, 10/21/09 SCC on floor of mouth,
T1NOMO, T2N1M0
TX: 39 IMRT, 8 cisplatin 11/30/09
PET/CT: 11/03/09: Lymph node involvement
PEG/PORT: 11/09
TX end: 02/01/10
PET Scan: 04/05/10 clear
PEG Out: 06/21/10
Biopsy: 12/23/10: fibrosis
HBO: 01/04/11 - ORN
Baby girl born 11-30-12
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