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"OCF Canuck"
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"OCF Canuck"
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If you get the idea from the title that I am not "little miss sunshine" then you are right. My CT results are due on Monday and given all the family "stuff" going on around here, I just wish I was in my usual "pre results panic" mode.

I am having a hard time figuring out why I have fought so hard to date. If you asked me to come up with 5 good reasons, I could not. My family has let me know that I am inappropriate, drive them crazy, too negative, and in general just not someone they really value. I think it would just be so much easier to lay down my armor, stop the fight against this viscious disease.

I talked with Jim awhile ago about what our purpose in life is. I still haven't found mine.

I'm sure there are those of you who will read this post and think to themselves "oh she is just having a pity party and wants people to say that she is valued". I can hardly expect people from an online forum to value me when my own family doesn't!!!!! I don't have that unrealistic expectation.

That truly isn't the case - but I do want to know if others have hit "rock bottom" like this, and if they did, what did they do?

Donna

Last edited by Pandora99; 04-30-2009 04:57 PM.

Donna,69, SCC L Tongue T2N1MO Stg IV 4/04 w/partial gloss;32 radtx; T2N2M0 Stg IV; R tongue-2nd partial gloss w/graft 10/07; 30 radtx/2 cispl 2/08. 3rd Oral Cancer surgery 1/22 - Stage 1. 2022 surgery eliminated swallowing and bottom left jaw. Now a “Tubie for Life”.no food envy - Thank God! Surviving isn't easy!!!! .Proudly Canadian - YES, UNIVERSAL HEALTH CARE IS WONDERFUL! (Not perfect but definitely WONDERFUL)
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Donna, don't you dare give up. You are too valuable to the forums . I would hate to come there and bend you over my knee. LOL. Hey , what am I saying, that could be a turn on LOL I just have to remember what a turn on is. You have to ignore your family if they act like that. Why are people so ignorant to their kin and siblings? JUst ignore them and smile Make them
miserable and maybe they will go their own way. Now no more negative talk young lady.


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
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Donna: I definitely don't think you're just having a "pity" party. You feelings are not just cancer related, but are part of a larger population called being human. I can relate as because, just before my cancer diagnosis,I was pretty tired of life. I felt used and abused by everyone. Cancer was my wake up call.

I always use my sister's situation when I talk to my very frustrated and depressed fiends. I really admired how she handled her situation, and try to immulate her in my life.

She and my brother-in-law had to get married way back in 1965. They have two boys. My brother-in-law was an ass, and still is. They are totally different people, and he could be cold and distant. My point is she realized that any person, especially him, could not provide all her emotional needs. So she got busy and built her own emotional fortress. She joined different groups, changed jobs, took up women's golf., etc., etc., etc. She is also very attentive to her friends. It may be just her personally, but I can't believe her support network. She'll have more people at her funeral than any dignitary!!! She's still married to the same man, but when she was 45 she gave him a ultimatum. She won, but he still isn't a warm and loving person in my view.

What I saying is don't depend on one or just your family for all support. You need to build you own network of support. It takes determinaton, guts and work, but it will make you feel better even if you only have one person.

I hope this helps a little. I appreciate that going through the 3 times is extremely frustrating. I totally empathize with you, and wish I could do more.

PS: For me, the cancer was a call for me to get back to being how I was a long time ago. I let people change me, and I lost myself. I was depressed and unhappy so long that I didn't realize it. When I was diagnosed, I decided I WAS IMPORTANT for a change, and really started to work to get my old self back. I won't let anyone intimidate me anymore. I'm honoring myself, and also practicing a few lessons from my sister (who by the way I was estranged from until recently.)

Take care. I'll keep you in my prayers

Sandy S.


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.
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Donna, Im so sorry to hear things arent good for you right now. Please do not let others careless comments determine your outlook. We have had this discussion before about family matters. Sometimes, people dont know how much they hurt others.

You are a very valuable member here so please hang in there. I do care and I know many others here do also. This forum is full of caring people who have been there and know how hard it is let alone when you have no support system. Please lean on us if you feel the need, we are here.

Remember, DO NOT EVER GIVE UP THE FIGHT !!!!!!!!


Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
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 xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
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Donna,

Just remember the saying "you can pick your friends, but you can't pick your relatives" and I'm sure we all have some relatives we would like to disown. I'm sorry to hear you have more than your fair share. Through my whole ordeal I have gotten more support from my friends and co-workers than a lot of my family members. Hang in there and lean on your OCF friends -- we all care deeply about you.


Susan

SCC R-Lateral tongue, T1N0M0
Age 47 at Dx, non-smoker, casual drinker, HPV-
Surgery: June 2005
RT: Feb-Apr 2006
HBOT: 45 in 2008; 30 in 2013; 30 in 2022 -> Total 105!
Recurrence/Surgeries: Jan & Apr 2010
Biopsy 2/2011: Moderate dysplasia
Surgery 4/2011: Mild dysplasia
Dental issues: 2013-2022 (ORN)
Joined: Feb 2007
Posts: 1,940
"OCF across the pond"
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"OCF across the pond"
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Donna
you must never forget that for some time you have had two families.One of them totally understands where you are and where you are coming from ,so thats the one to turn too at times like these.Its a waste of energy trying to explain to "outsiders" who never really want to hear anything except that you are ok.This is sometimes because they are too scared by the unknown and also because the word cancer scares the bejesus out of them.
Don't waste your time sweetie,and if you need a buddy to speak to about families,i would have a chat with Patty.

chin up chick and no more of this negative crap.We need you
love liz

Last edited by Cookey; 04-30-2009 11:10 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.
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Donna, I might seem like superman at times but that is my body. It seems my mind can go into the mood of WHY ME at times. I am like all of us, we get disguted with our siblings often because they ignore us or are too busy to stop by just to see us and how we are. We want them to come see us because they worry and wonder how we are.Just last night I wanted to talk something over with my 3 and called them. Oh yes, I did get one returned call. My oldest son that lives in the Columbus area called me back and was very busy at the time. The other 2, I haven't heard a word from. Now really I can't blame them for ignoring me. They have no idea I wanted to disguss anything with them. We usually talk quit eoften bt it made me a little upset at the time. Things just happen that we must accept the fault for. I should have left in the message I wanted to talk something over. My Fault for that.


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
Joined: Mar 2008
Posts: 3,082
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Donna

Hit rock bottom? I do it every day. Seriously, I wrestle with the question of "why bother" at least once each and every day. The answers are usually different and sometimes no answer at all.
I'm on my Bob Dylan new album kick and one song sums up our mutual dilemma and search for answers and purpose:
[quote]"There's reasons for that and reasons for this, I can't think of any just now, but I know they exist" [/quote]
Best wishes on the CT results -
Of course life was simpler back in Kindergarten when the good sisters taught that the purpose for all of us was the same:
Q. Why did God make me?
A. God made me to know, love and serve Him in this world and be happy forever with Him in the next.
Peace and Love
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
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Posts: 216
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Hey Donna....to answer your question, yep, I think that most go through the "rock bottom" phase...be it patient or caregiver. We are having one of those times now. Hubby isn't returning phone calls or re-setting appointments, and I'm just too tired and strung out right now to be his cheerleader. Family is of no help....kids are either too busy or too scared to come around so they don't. I do agree with Sandy...make your own support network and I agree with Liz...chin up! avoid the negative and come here for support.

For me, the best way out of a total funk is to throw myself into doing something that takes my mind away from the negative. Reading, crocheting, sewing. Something where you can't think about the present moment.

Best wishes with your CT results. BTW "little miss sunshine" is highly overrated. smile


CG to H with SCC BOT T4N2cM0 dx 12/19/08, teeth removed pre-tx; Erbitux & RT-done 3/12/09, PEG 2/9/09-7/14/09; ND 6/16. Pet 6/12-no mets except lymph node in neck removed on 6/16. Chyle leak,2nd surg to repair. Dilate esophagus 4/15/10. Clear PET 12/17/10
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We may or may not ever find the purpose for our lives. But, saccharine and old fashioned though it may be, the movie "It's a Wonderful Life" makes one think, how have I affected the world around me? We may never know for sure, (we can't all have Clarence the Angel spell it out for us) but hopefully in more possitive than negative ways. Stay in the fight and keep spreading as much positivity as you can (as you do on this forum) and what more can anyone ask of you?


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.
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