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Joined: Jul 2010
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lizc Offline OP
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Hi Everyone, I was just reading the posts from the new normal.......I like many other caregivers feel your pain. The subject is "will things ever be normal again".... There are many degrees of "normal". So my answer is NO!!
I have been through it all. First diagnosis in 2001 with recurrences every 2 years (major reconstruction each time, etc...too much to state. BUT my husband and I are still pushing forward!!!! This is the most stressful thing anyone can go through. This cancer even lead us down the divorce isle because I was told by him "this has not affected your life at all, nothing has changed for you.....and with that came the resentment towards me and the kids, I don't think I need to explain this either... OK my point is and this is directed at BOTH victims. SUPPORT EACH OTHER!!!!! It sucks!! I can't say that enough!! Basically what happened between my husband and I was�......I always supported him. Made sure we went on vacations to accommodate him, a kitchen so i could cook meals and puree them, called restaurants in advanced and requested puree meals, same when we went on a cruise and Hawaii BUT this cancer has not affected me!!!! So he contently criticized me, pointed out things i did wrong, told me i was doing everything wrong, for the last 3 years I moved my daughter in and out of college, went to family weekend because he wouldn't go, basically I was the emotional support for my children. He had CANCER and nothing else was important but him. I stuck with it for 8 years, had a nervous breakdown and filed for divorce. Well then he was diagnosed as "inoperable", I told him that I would continue to help him with anything he needed, of course I would. Well something opened his eyes... He actually wrote on a piece of paper "I am sorry for taking you for granted and the great care you give me". Simple words sometimes makes a difference!! I stuck with him even though I was treated like a door mat. Whatever side of cancer you are on you should be nice!! I know it is hard and sometimes it is smiling with gritted teeth, believe me, I don�t think I have back teeth anymore either!!! I have been there, done that, wish to god that NOBODY ever has to go through this but most of all�. I pray every day for those of us like myself and you guys that do have to cope with this!!!
I have found that the holiday season is the hardest for me. Like CMMoore wrote about forgetting or just plain out ignoring her birthday, I feel alone. I am the lonely, miserable person with the big smile on my face. I find if I am down I try to take a deep breath and thank god that I am alive and able to greet and love the people in my life. I am truly trying to be thankful this season. I hope everyone out there has a very peaceful holiday season!!
Love and strength to you ALL!!!
Liz


CG
01 SCC LBOT 42YO-part gloss 5 mo rad
03 recur RSCC gloss & R Jaw removed
05 recur LSCC
07 recur RSCC recon R jaw fm left fib
09 recur LSCC gloss & LL jaw. recon fm rt fib
7/10 inoperable.TrachPEG-carbo/taxol
11/11/10 ca back begin erbitux
12/11/10 passed away in sleep - at peace at last!! XOXO
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WOW Liz!!! Thanks for the post!! Such an eye opener for me. You are an amazing person to go through what you have. I'm sitting here complaing about "dealing" with my sisters attitude and cancer being diagnosed once..I should be counting my lucky stars that I have this time..You truly are an inspiration on how unselfish you have been through all this..My prayers are with you and your husband. I guess sometimes you have to vent to get a response from someone like you. Thanks so much. I just wish my sister would speak to me again after the fight we have had a week ago.. In due time I guess.


CG to Sister (42). Smoker quit @ diagnosis Dx 4/20/10 SCC T2N0M0, Rside of tongue Hemigloss R neck dis, all nodes removed 6/2/10, Trach and NG in, home 6/8/10,8/18/2010 start erbitux x6, 30 IMRT end 10/11/10 with only 3x erbitux due to reaction and one week off of rads
1/10/2011 Clear PET!!!
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Double Wow, Liz!! Every caregiver should have that "little piece of paper". And Susan - I do hope things get better for your sister and you. I'm sure she realizes what a special sister she has in you, but may not be able to express it right now. I am just so grateful for all the caregivers and the many survivors who were there to support me when my son and I were in our darkest days and guided us to our new and better "normal"!


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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lizc Offline OP
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Thanks Susan and Anne-Marie. You have to vent. Keeping it in does nobody good. I hope you and your sister make up SOON. No time to waist!!


CG
01 SCC LBOT 42YO-part gloss 5 mo rad
03 recur RSCC gloss & R Jaw removed
05 recur LSCC
07 recur RSCC recon R jaw fm left fib
09 recur LSCC gloss & LL jaw. recon fm rt fib
7/10 inoperable.TrachPEG-carbo/taxol
11/11/10 ca back begin erbitux
12/11/10 passed away in sleep - at peace at last!! XOXO
Joined: Aug 2010
Posts: 75
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Thank you Liz, for this post. Your situation sounds so much like what I'm going through with my husband and it is so hard. It never fails--when I am in need of reassurance and a boost in morale I find what I need right here on OCF.


CG to sp age 53
4/10 BOT IVb
6/10 Ttl Gloss Lrngectmy L Mndbltmy 5+ Nodes
7/10 Cispl & Rad
1/11 recur lung mets
2/11 Clin Tr Erb Carb 5FU last 5/11
7/11 Tumor growth began wkly Bleo, Taxol, Carbo
10/28/11 Hospice; Passed 11/7/11
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it's just not working for me...i tried, he isn't. i can't help him if he don't want to be helped is how i feel and i told him that yesterday. he don't care, i don't care either.


CG to Ron
Out of Pain 4/3/13
4/12-lung and under chin growth no treatment
1/13/12 lung biopsy
6/11 recur 6/30 resection #2 Clear margins
Clear 12/10
Surg 5/13/10 neck dis/nodes part gloss/flap R thigh all teeth out
RAD 30 8/10
DX 4/2/10 "Oral Cavity" T3NOMO
12/28/07 Non Hodg Lymph remission 7/08
passed away 4.3.15, RIP Ron, you are greatly missed
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Well Suez..you do care but what can you do. I am so sorry and can feel your pain right thru the monitor. Just know that all of us care and we hope things get better.

Hugs, Deb


Deb..caregiver to husband, age 63 at diagnosis, former smoker who quit in 1997.
DIAGNOSIS: 6/26/07 SCC right tonsil/BOT T4N0M0
TREATMENT START: 8/9/07 cisplatin/taxol X 7..IMRT twice daily X 31.5.
TREATMENT END: 10/1/07
PEG OUT: 1/08
PORT OUT: 4/09
FOLLOWUP: Now only annual exams. ALL CLEAR!

Passed away 1/7/17 RIP Bill
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thanks Deb...i just don't like when everybody else says " go to aa" or tell him to quit or talk to the doc...can't do nothing if they don't want to be helped. guess his choice which in my mind just shows me where I stand in the relationship over his health and life...nowhere, cigarettes and alchohol rate higher I guess we will just see after the PET on Dec 16th what it shows. If he's clear, than I will bring down the hammer and let him know he's out of my house OR he starts to take care of himself.


CG to Ron
Out of Pain 4/3/13
4/12-lung and under chin growth no treatment
1/13/12 lung biopsy
6/11 recur 6/30 resection #2 Clear margins
Clear 12/10
Surg 5/13/10 neck dis/nodes part gloss/flap R thigh all teeth out
RAD 30 8/10
DX 4/2/10 "Oral Cavity" T3NOMO
12/28/07 Non Hodg Lymph remission 7/08
passed away 4.3.15, RIP Ron, you are greatly missed
Joined: Jul 2009
Posts: 280
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A little bit of advice I got from a marriage seminar we attended in the spring....
Sometimes all you can do it pray. Then duck so the good Lord can slap him upside the head and set him straight. =)



CG to my husband, Matt. Dx June 2009 Stage IV Oropharengeal SCC right tonsil primary with distant metastases. Rad to neck- Surgeries to lungs- Every avail chemo - ran out of options Jan 2012, called for hospice help Feb 2012, at rest March 19, 2012.
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OMG I really don't know how he is surviving! He usually is dressed all the time when I see him and he is very thin, but today I saw him without his shirt on.OMG he looks like an Ethopian...all you see is his rib cage...how can I get him put into the hospital? How can I get his docs to see him like this? His PET scan isn't until 12/16...he said yesterday he is gonna start trying to get more in him foodwise or boost or ensure wise...I don't believe him he needs put in the hospital and force fed until he gets his stomach back to be able to accept food...this has GOT to be putting a strain on his organs...


CG to Ron
Out of Pain 4/3/13
4/12-lung and under chin growth no treatment
1/13/12 lung biopsy
6/11 recur 6/30 resection #2 Clear margins
Clear 12/10
Surg 5/13/10 neck dis/nodes part gloss/flap R thigh all teeth out
RAD 30 8/10
DX 4/2/10 "Oral Cavity" T3NOMO
12/28/07 Non Hodg Lymph remission 7/08
passed away 4.3.15, RIP Ron, you are greatly missed
Joined: Jul 2009
Posts: 280
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Is Ron on antidepressants? I know that Matt gets quite self destructive when he forgets to take his. He gives up on everything and everyone.
I know that it must be hard to bear on top of everything else. I am keeping you in my prayers.


CG to my husband, Matt. Dx June 2009 Stage IV Oropharengeal SCC right tonsil primary with distant metastases. Rad to neck- Surgeries to lungs- Every avail chemo - ran out of options Jan 2012, called for hospice help Feb 2012, at rest March 19, 2012.
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Baker Act him for the max which I believe is 3 days. Call your police dept for details.


David

Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
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Posts: 16
lizc Offline OP
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You need to fatten him up in a way that he does not realize what you are doing. He is probably more scared than you think because he is the only one that truly knows what he is feeling inside. This is the PERFECT time of year to make a nice stew!! Make the pieces of meat, potatoes and carrots so small that he really doesn't have to chew them. cook it all day in crock pot. I am no expert but he is probably having more difficulty than he wants to admit with eating. i know he's fighting you and hiding in the alcohol and cigarettes. Believe me i know it's hard to do but don't nag. Bribe him any way you can. think of him like your kids when you tried to make them eat there veggies. another good thing to make that is easy to swallow and cooks while your at work is stew. but NO hot peppers. green and red sweet ones and i cut up London broil real small along with chop meat and any and all kinds of beans (protein he needs that)!!


CG
01 SCC LBOT 42YO-part gloss 5 mo rad
03 recur RSCC gloss & R Jaw removed
05 recur LSCC
07 recur RSCC recon R jaw fm left fib
09 recur LSCC gloss & LL jaw. recon fm rt fib
7/10 inoperable.TrachPEG-carbo/taxol
11/11/10 ca back begin erbitux
12/11/10 passed away in sleep - at peace at last!! XOXO
Joined: Jul 2010
Posts: 531
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lizc, he is NOT eating at all. Nothing, no food at all, barely his drinks(non alcholic)today I am calling his brother in law and sister to have them go to my house, he needs to go to hospital I think and very soon, I warned him I AM calling the doctor today so don't be surprised on anything that transpires today with you. He don't know bout my plan with his brother in law, I see his spinal bones and his shoulders are sunken in, trying to feed him now won't work, he needs hospitalization. He has starved himself...and what is "Baker act" David? My daughter is a criminal justice major and we were discussing how I can call the ambulance and force him to go.


CG to Ron
Out of Pain 4/3/13
4/12-lung and under chin growth no treatment
1/13/12 lung biopsy
6/11 recur 6/30 resection #2 Clear margins
Clear 12/10
Surg 5/13/10 neck dis/nodes part gloss/flap R thigh all teeth out
RAD 30 8/10
DX 4/2/10 "Oral Cavity" T3NOMO
12/28/07 Non Hodg Lymph remission 7/08
passed away 4.3.15, RIP Ron, you are greatly missed
Joined: Sep 2006
Posts: 8,311
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SUEZ,


If someone you love is out of control and you fear for their safety or the safety of others, you can have them involuntarily Baker Acted and observed for 72 hours. This term is only used in Florida; other states usually refer to it as an involuntary psychiatric hold.
.Difficulty: Challenging
Instructions.1
Review the requirements for the Baker Act. You can speak to a psychologist or other mental health care professional, or review chapter 394 of the Florida statutes.

2
Keep an eye on your friend or family member. Try to get her help in the form of mental health counseling or medication. Even if she seems to be improving, watch her very carefully. Using the Baker Act is a last resort.

3
Talk to your friend about voluntarily Baker Acting himself. Anyone 18 years of age or older can Baker Act himself. If the person is under 18, parents must provide the authorization.

4
Contact your friend's mental health professional. If she doesn't have one, skip to Step 5. Any mental health professional can authorize the psych hold if he feels it's necessary.

5
Call the police if the person is placing himself or someone else in immediate danger. This includes threats of suicide or initiating a suicide attempt. Law enforcement officers can take him into custody and request that he be put on a 72-hour psych hold.

6
File an ex parte order at the clerk of court's office for your county. To do this, you must have witnessed the criteria for initiating the Baker Act and swear to it. You must have discussed voluntary Baker Acting with the person previously. Fill out the necessary paperwork at the clerk's office, and after it's processed, a law enforcement officer will take the person into custody. A mental health professional will then evaluate your friend.
.

Read more: How to Baker Act Someone | eHow.com http://www.ehow.com/how_4431397_baker-act-someone.html#ixzz17WuX8EeJ


David

Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
Joined: Jul 2010
Posts: 531
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Posts: 531
i actually read the same thing online exact same thing...thanks


CG to Ron
Out of Pain 4/3/13
4/12-lung and under chin growth no treatment
1/13/12 lung biopsy
6/11 recur 6/30 resection #2 Clear margins
Clear 12/10
Surg 5/13/10 neck dis/nodes part gloss/flap R thigh all teeth out
RAD 30 8/10
DX 4/2/10 "Oral Cavity" T3NOMO
12/28/07 Non Hodg Lymph remission 7/08
passed away 4.3.15, RIP Ron, you are greatly missed
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