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#148877 - 04/30/12 11:04 AM Re: Wondering if it's worth it [Re: iceman600]
Anne-Marie Offline
Patient Advocate (old timer, 2000 posts)

Registered: 11/03/06
Posts: 2601
Loc: TN
Iceman - I am so sorry for what you are going through. You CANNOT give up. I have not been where you are, but my son has, and even before he ever heard of Oral Cancer. He was just 32 and hospitalized for suicidal depression because of something that occurred when he was a child and which had just surfaced as a recovered memory. I know there are others here with similar experiences to yours. Have you talked to your doctor about this? Are you on any medications? - Some meds for depression actually cause suicidal thoughts. Who are the people close to you - family, friends? I HATE what happened to you, and to my son and to everyone here touched by oral cancer. That feeling can be turned around into a FIGHT mode. It cannot be done all at once. Fighting your way out of that dark hole can only be done in small steps. But things can and do get better. I've seen my son come out of that dark hole of depression and then the cancer, divorce and so I know it is very possible. Hang in there and let us know a little more about you and your life. You CAN do it!!
_________________________
Anne-Marie
CG to son, Paul (age 33, non-smoker) SCC Stage 2, Surgery 9/21/06, 1/6 tongue Rt.side removed, +48 lymph nodes neck. IMRTx28 completed 12/19/06. CT scan 7/8/10 Cancer-free! ("spot" on lung from scar tissue related to Pneumonia.)




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#148884 - 04/30/12 02:37 PM Re: Wondering if it's worth it [Re: Anne-Marie]
Cheryld Offline
"OCF Canuck"
Patient Advocate (old timer, 2000 posts)

Registered: 12/22/10
Posts: 4963
Loc: Toronto canada
Hi there iceman - please don't give up there are several people here who've had the same surgery and fallout from treatment that you've had - Eric, Christine are just two of them - they're amazing advocates for OC and their spirit is tireless. We live in a twisted society where looks seem all important but there are people who can see beyond that. Giving up before trying will get you nowhere. Start by finding something you enjoy - cycling - drawing - fishing etc... Join a group... You will meet like minded people - and I'm sure that showing them who you are - will draw them to you. Plus do talk to a professional about your feelings. Hugs we're here...
_________________________
Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan

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#148889 - 04/30/12 03:09 PM Re: Wondering if it's worth it [Re: Cheryld]
ChristineB Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Registered: 06/23/07
Posts: 8478
Loc: PA
I have already sent you several messages and emails.

I know its not easy going thru life looking different. Before I had oral cancer I was a very pretty woman. Now I am disfigured and have no teeth, probably will never get them. But even after everything I have been thru I am still the same positive happy person inside. That cant be taken away from me! Please contact me when you get your messages. Remember your cousin is who reached out to me over a year ago and we emailed for a while before you joined OCF. You can get past this low point!!!! I have faith in you!
_________________________
Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07, no caregiver
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo extended hospital stay, ICU & burn unit
PICC line w/ IV antibiotics 8 mo
10/4/10, 2/14/11 reconst surg
OC 3 times in 3 years
very happy to be alive smile

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#148893 - 04/30/12 04:04 PM Re: Wondering if it's worth it [Re: ChristineB]
EricS Offline
Patient Advocate (1000+ posts)

Registered: 01/03/09
Posts: 1844
Loc: Idaho
Iceman,

I was 33 years old when I was diagnosed, I didn't have much of a shot at living due to late stage and invasiveness of my tumors, however I walked through the hell that was treatment and surgery.

After my mandiblectomy, I too became disfigured, disabled, and lost everything that I felt defined me. I needed massive amounts of pain medications to handle the pain, I drowned myself in self pity and secluded myself from the rest of the world really as I didn't like to socialize any more due to my appearance and the challenges I faced due to the side effects of treatment. I "loved" myself (maybe too much...yes definitely too much), my job, and my life before cancer and found myself robbed of all of it, the pain was almost too much to bear.

When I found these forums, in many ways I found hope again. I was able to interact with others who could relate to the road I now found myself on, they could understand my pain and frustration and empathize with my feelings of loss and despair. That is what you have on these forums my friend...people who care, who can relate...and ultimately help you.

Iceman (which reminds me of Chuck Liddell as I'm a huge UFC fan) what I would tell you is that I'm here for you brotha if you need. I care and I understand and I'm available to you whenever, no strings, no judgement, just support my friend. The hand we've been dealt as young men sucks ass and is a daily struggle, trust me I've lived it too. What I found in the end though is how I face it is my choice. I wake up everyday and make the choice to not let it beat me, not let it kill my spirit. I wake up everyday and choose my attitude and in a way, when I choose to be positive, help others with this disease, raise awareness, and live "above" what cancer has handed to me, it's like raising my middle finger and telling it to F#ck Off.

I'm an insolent cuss like that anyway, I won't let it beat me and that's what it will do if I focus on the negative, so instead I put on what I consider a smile (who can tell really as my face is all f#cked up) and in doing so stand in defiance to the disease that tried to kill and break me.

Take this one by the horns brotha, let us help you see that there are ways to enjoy life if you choose it. I know for me, I am more than what I look like, I am more than what I'm able to do physically, I am more than what this disease has taken from me. You are too my friend, you just have to believe it.


I'm here when you choose to start fighting back, but only you can make that choice my friend.


Love you brotha, keep fighting


Eric


Edited by EricS (04/30/12 04:10 PM)
_________________________
Young Frack, SCC T4N2M0, Cisplatin,35+ rads,ND, RT Mandiblectomy w fibular free flap, facial paralysis, "He who has a "why" to live can bear with almost any "how"." -Nietzche "WARNING" PG-13 due to Sarcasm & WAY too much attitude, interact at your own risk.

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#148895 - 04/30/12 05:45 PM Re: Wondering if it's worth it [Re: iceman600]
Eva Grayzel Offline
National OC Advocate/Speaker
Contributing Member (25+ posts)

Registered: 06/05/04
Posts: 30
Loc: NJ/PA
Dear Iceman,
Your reactions and feelings are completely normal and understandable. We survivors can totally relate. I, too, came to a point where I decided life wasn't worth living. But, I'm so glad I had doctors, who were like coaches, who pulled me from the depths.
In a nutshell, this is what I learned: Your life as it is, feeding tube, disfigurement, slurred speech and all, is an OPPORTUNITY. If only you could take a different lens to see your life. You don't need to be stuck at home. All those people that know you and love you are looking to you to teach them, show them, how to overcome adversity. There is a woman out there who will love you for who you are...there are women out there just like you!! Have you read the book, Autobiography of a Face? Story of a young girl with a face disfigurement.
Get on the dating sites, and let people know all the talents and traits you do have that make you special. Certainly, you haven't lost any of those from oral cancer. Get a photographer to capture the beautiful side of you.

Yes, your life is different, but you can make it what you want if you get yourself OUT from behind the computer. No need to hide who you are - empower yourself by educating the world about self-esteem, oral cancer, and how to be a friend, and how to interact with someone who has differences.
There are PLENTY of jobs you can get that don't entail speaking to clients...where you can find a sense of importance as well as some joy.

I live in Easton PA, and grew up in Englewood, NJ, with family in Morristown and around. How about you work with me to raise awareness about OC? Let's talk. email me: eva@evagrayzel.com. If you decide that life isn't worth living, that is your choice, and I would understand. However, give an alternative a shot. First, you need to accept that there is a chance you can be happy and find joy in life. Then, act to make it happen. With the help of friends and family, if you can't make it happen, you will have tried your best. That is all anyone expects of you. Contact me. Eva
_________________________


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#148938 - 05/01/12 06:33 PM Re: Wondering if it's worth it [Re: Eva Grayzel]
iceman600 Offline
Member

Registered: 11/01/11
Posts: 6
Loc: New Jersey
Thank you all for all your concerns.... but i guess all of you understand how hard a life can be for a person with a condition like this. some people can cope and some can not, esp me. in my condition, i have to rely on others for me to live... and with that, sometimes i cant look @ the ones whos taking care of me because somehow i know im a burden to them. and thats one of the frustrations i have.

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#148941 - 05/01/12 07:04 PM Re: Wondering if it's worth it [Re: iceman600]
Anne-Marie Offline
Patient Advocate (old timer, 2000 posts)

Registered: 11/03/06
Posts: 2601
Loc: TN
I can only speak as a caregiver to my son. I know he went thru a time when he felt guilty for all that I was doing for him ( which was so wrong!). He talked to his therapist about this who set him straight asking if he would not be ready to do the very same thing for his daughter. That made him understand. But more than that, no matter who takes care of you, whether it's a volunteer, a paid caregiver or someone that loves you, the very act of caring for you is providing a purpose in their lives. For me, caring for my son not only provided a purpose, but it kept me from losing my sanity and succumbing to the same depression he was in. We were both in a deep dark hole and I knew I had to be the one to get out of that dark place and drag him out behind me. Doing the menial things like getting his food, doing his laundry and cleaning the litter box (ugh, he had three cats!) were things I was SO grateful for because it gave me purpose and kept me in the "fight" mode. I HAD to do it as much for me as for him! By giving up, you are denying someone a purpose in their lives. It does make people feel good to do something for others. If you can acknowledge it in even the smallest way, it makes them feel even better. You have gotten such excellent suggestions above. Also, if you take Eva's suggestion to spread awareness, then you will be taking care of what Eric notes in his signature line: ""He who has a "why" to live can bear with almost any "how".


Edited by Anne-Marie (05/01/12 07:17 PM)
_________________________
Anne-Marie
CG to son, Paul (age 33, non-smoker) SCC Stage 2, Surgery 9/21/06, 1/6 tongue Rt.side removed, +48 lymph nodes neck. IMRTx28 completed 12/19/06. CT scan 7/8/10 Cancer-free! ("spot" on lung from scar tissue related to Pneumonia.)




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