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Why? #94447
04-27-2009 09:27 PM
04-27-2009 09:27 PM
Joined: Dec 2007
Posts: 57
Chicago
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little sister Offline OP
Supporting Member (50+ posts)
little sister  Offline OP
Supporting Member (50+ posts)
L

Joined: Dec 2007
Posts: 57
Chicago
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.
Re: Why? [Re: little sister] #94450
04-27-2009 09:52 PM
04-27-2009 09:52 PM
Joined: Feb 2007
Posts: 788
San Francisco,CA
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misskate Offline
"Above & Beyond" Member (500+ posts)
misskate  Offline
"Above & Beyond" Member (500+ posts)
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Joined: Feb 2007
Posts: 788
San Francisco,CA
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!!!
Re: Why? [Re: misskate] #94451
04-27-2009 11:26 PM
04-27-2009 11:26 PM
Joined: Feb 2007
Posts: 1,940
Harewood -Yorkshire, UK
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Cookey Offline
"OCF across the pond"
Cookey  Offline
"OCF across the pond"
Patient Advocate (1000+ posts)
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Joined: Feb 2007
Posts: 1,940
Harewood -Yorkshire, UK
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.
Re: Why? [Re: Cookey] #94457
04-28-2009 03:57 AM
04-28-2009 03:57 AM
Joined: Jan 2008
Posts: 706
New Jersey
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suemarie Offline
"Above & Beyond" Member (500+ posts)
suemarie  Offline
"Above & Beyond" Member (500+ posts)
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Joined: Jan 2008
Posts: 706
New Jersey
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.
Re: Why? [Re: suemarie] #94465
04-28-2009 05:23 AM
04-28-2009 05:23 AM
Joined: Mar 2003
Posts: 1,376
Minnesota, land of 10,000 taxe...
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Mark Offline
Patient Advocate (1000+ posts)
Mark  Offline
Patient Advocate (1000+ posts)
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Joined: Mar 2003
Posts: 1,376
Minnesota, land of 10,000 taxe...
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, 17 Years 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.
Re: Why? [Re: Mark] #94466
04-28-2009 05:53 AM
04-28-2009 05:53 AM
Joined: Jul 2006
Posts: 388
Florida
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Lostpassword Offline
Platinum Member (300+ posts)
Lostpassword  Offline
Platinum Member (300+ posts)
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Joined: Jul 2006
Posts: 388
Florida
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)
Re: Why? [Re: little sister] #94468
04-28-2009 06:14 AM
04-28-2009 06:14 AM
Joined: Mar 2008
Posts: 3,082
Alexandria VA
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Charm2017 Offline
Patient Advocate (old timer, 2000 posts)
Charm2017  Offline
Patient Advocate (old timer, 2000 posts)
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Joined: Mar 2008
Posts: 3,082
Alexandria VA
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
Re: Why? [Re: little sister] #94470
04-28-2009 06:19 AM
04-28-2009 06:19 AM
Joined: Feb 2008
Posts: 38
Maryland
C
Carol Kanga Offline
Contributing Member (25+ posts)
Carol Kanga  Offline
Contributing Member (25+ posts)
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Joined: Feb 2008
Posts: 38
Maryland
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!
Re: Why? [Re: Carol Kanga] #94484
04-28-2009 08:50 AM
04-28-2009 08:50 AM
Joined: Jun 2007
Posts: 5,260
Mingo Jct., Ohio
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EzJim Offline
Patient Advocate (old timer, 2000 posts)
EzJim  Offline
Patient Advocate (old timer, 2000 posts)
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Joined: Jun 2007
Posts: 5,260
Mingo Jct., Ohio
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
Re: Why? [Re: EzJim] #94548
04-28-2009 08:07 PM
04-28-2009 08:07 PM
Joined: Dec 2007
Posts: 57
Chicago
L
little sister Offline OP
Supporting Member (50+ posts)
little sister  Offline OP
Supporting Member (50+ posts)
L

Joined: Dec 2007
Posts: 57
Chicago
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.
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