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#165388 05-23-2013 09:42 AM
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Sturt1 Offline OP
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At wits end. Short of cutting and pasting - I just posted under suggestions needed under symptoms etc..... Looking for anything that can help. I'm trying my best to be strong, so very hard supporting someone who can't talk and doesn't want to be fussed over who is having so many issues, it's breaking my heart daily 24/7.


Colleen
Wife/advocate for husband. 52 yo nonsmoker
ISSC tonsil stage IVa. HPV + Enlarged node & tonsil,
CT 2/13
Bx lt tonsil 3/8,
PET 3/16
Tx started 4/9/2013 Cisplatin x3 and IMRT x 7 wk
Tx end 5/29
GT 5/24-7/17
Officially in Recovery Phase! : )
CT scan 8/13-NED !
CT scan 7/14-NED
5/2018- 5 year anniversary -NED
Joined: Jun 2007
Posts: 10,507
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I found your other post under Eating, Speech, Swallowing and Menu Ideas. Its in the right place as you asked for help with nutrition info. I did reply to that post already.

Being a caregiver is NOT an easy job at all. I would make a horrible caregiver! I just cant imagine all you must go thru and if you have a stubborn patient that makes it 10 times harder. Even on lousy days you need to be Ms Sunshine with encouraging and upbeat while being a patient advocate. Too much all at once all the while you are also trying to keep a normal lifestyle and run a household. Many caregivers seek out therapists and some take anxiety meds. Its nothing to be ashamed of, caregivers are human and have it tough too. Sounds like you are doing a good job with everything.

Hang in there and very soon this will all be a distant memory. In about another month your husband should begin to slowly have some better days. We are here to support you so please dont hesitate to hang out on the forum.


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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Sturt1 Offline OP
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Thx

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Colleen, like you said in your signature line, you are indeed in the home stretch, but it is also the time when most caregivers would feel worn out both emotionally and physically. I remember when we were at the stage that you are in now, I kept getting the thought that I couldn't do what I was doing for much longer. It was hard for me not to be able to have real conversations with my husband -- he just did not have the desire to talk because he was so tired and all his energy was going into dealing with the pain and the discomfort. I found the loneliness difficult because most people could not really understand the toughness of the treatment and so it made sharing whatever anxieties or fears I had well-nigh impossible. It is hard to believe now, but it does get better. For the time being, give yourself permission to feel upset. Come and vent on the forum. We all understand what you are going through.


Gloria
She stood in the storm, and when the wind did not blow her way, she adjusted her sails... Elizabeth Edwards

Wife to John,dx 10/2012, BOT, HPV+, T3N2MO, RAD 70 gy,Cisplatinx2 , PEG in Dec 6, 2012, dx dvt in both legs after second chemo session, Apr 03/13 NED, July 2013 met to lungs, Phase 1 immunotherapy trial Jan 18/14 to July/14. Taxol/carboplatin July/14. Esophagus re-opened Oct 14. PEG out April 8, 2015. Phase 2 trial of Selinexor April to July 2015. At peace Jan 15, 2016.
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It's true, Colleen - It's really tough on the survivor/patient just dealing with the assault on his body with Tx and meds. Must be especially hard on guys who are so used to being in control and being the "decider" in so many areas. Any change in life carries a lot of stress with it and the loss of a former way of life is right up there at the top of the list. It's been six+ years since the end of my son's Tx, but I still remember those gloomy days of non-communication. I asked my son once why he could brighten up and smile when his then 5-year old daughter or some of his close friends came to visit but never for me, and he told me that he only had a small amount of energy to spare and he had to "save it up" for when his daughter or others came to visit and it did help me to understand. The two weeks right after Tx ended were the worst for Paul, but by then, he was a lot better emotionally about dealing with the rough days since he knew it was definitely going to get better. Remember to take care of you, too. And stay in touch here.

Last edited by Anne-Marie; 05-23-2013 01:38 PM. Reason: typo

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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Sturt1 Offline OP
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Thank you all for your input and it is nice to have someone who really understands the magnitude of this pain for the patient and for the cg. It's been so hard for him as always the upbeat,can handle anything,don't need help from anybody kinda guy. He has always been the helper for others.
Its hard with no communication to know where
he is in this, on the bad days he seems so defeated and it breaks my heart. On the good days,there will be a sl bounce in his step in the morning and a smile for me. Which when he turns makes me fall apart.good at disguising when we are together, not so good otherwise, still having my meltdowns.I just hate this and hate what it has done to him and the pain he is living with just kills me as there is nothing I can do to make it better. I am relieved we are going tomorrow for GT. at least he will get some needed hydration and start getting some nutrients! It's so hard to see such a big guy waste away in front of your eyes in such a short period of time. The pain of watching your loved one deal with this is just unbearable.


Colleen
Wife/advocate for husband. 52 yo nonsmoker
ISSC tonsil stage IVa. HPV + Enlarged node & tonsil,
CT 2/13
Bx lt tonsil 3/8,
PET 3/16
Tx started 4/9/2013 Cisplatin x3 and IMRT x 7 wk
Tx end 5/29
GT 5/24-7/17
Officially in Recovery Phase! : )
CT scan 8/13-NED !
CT scan 7/14-NED
5/2018- 5 year anniversary -NED
Joined: Oct 2011
Posts: 805
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Hi Colleen,
I also know exactly what you are going through. You have described my husband as well and it was so hard to see him so down. We had been married 28 years and I think I had seen him throw up once. He just never got sick.
I can remember taking showers and just sobbing in there. Then I would get out and by the time I had dried my hair my eyes weren't as puffy anymore and life went on.
There were days that I got no real communication from Kev, then other days he would try to be social. That's when I felt the worst for him because I knew how much he was hurting but he was trying to be strong for the kids and me. Most of the time he kept to himself though.
Meal time was the worst because we all felt guilty for being able to eat. It was just awful and some nights I could see it made him angry which of course made it worse.
I'm sorry for what you are going through, but many of us do understand and have been in your shoes. This site was a blessing to me and got me through the end. The 3-4 weeks after tx is finished is the hardest and that is actually when I went through a major depression type thing. I can't really explain it. It was like I had this job for several months. I was the driver, listener, caregiver and very needed, then when he started getting a little better I found that I was a little lost as to what to do with myself. I still had all the same home responsibilities, kids and my mom, who lives with us, but there was this hole where I had been so needed and focused on him. Just know if you feel that way, it's normal.
Hang in there and know we are here for you.
Kathy


Kathy wife/caregiver to:
Kevin age:53
Dx 7/15/11
HPV16+ SCC Stage IV BOT/R
Non smoker, casual drinker
7/27/11 Cistplatin, taxotere,5FU 2/3week sessions, followed by IMRT 125cgy x 60 (2x daily) w/Erbitux weekly. Last rad 10/26/11. Last Erbitux 10/27/11
PEG placed 9/1/11 Removed 11/8/11
Clear PET 10/12 and 10/13 and ct in 6/14
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Sturt1 Offline OP
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Thx


Colleen
Wife/advocate for husband. 52 yo nonsmoker
ISSC tonsil stage IVa. HPV + Enlarged node & tonsil,
CT 2/13
Bx lt tonsil 3/8,
PET 3/16
Tx started 4/9/2013 Cisplatin x3 and IMRT x 7 wk
Tx end 5/29
GT 5/24-7/17
Officially in Recovery Phase! : )
CT scan 8/13-NED !
CT scan 7/14-NED
5/2018- 5 year anniversary -NED
Joined: Jan 2009
Posts: 476
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Colleen - sent you a PM.


Wanda (47) caregiver to husband John (56) age at diag.(2009)
1-13-09 diagnosed Stage IV BOT SCC (HPV+)
2-12-09 PEG placed, 7-6-09 removed
Cisplatin 7 weeks, 7 weeks (35) IMRT
4-15-09 - treatment completed
8-09,12-09-CT Scans clear, 4-10,6-11-PET Scans clear
4-2013 - HBO (30 dives) tooth extraction
10-2019 - tooth extraction, HBO (10 dives)
11-2019 - Left lateral tongue SCC - Stage 2
Joined: May 2010
Posts: 638
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Hi Colleen

I too, had the partner who went through hell, seemingly refusing to help himself or allow others to help him, hanging tough to everyone's detriment and lashing out without warning.

We are out the other side and Alex and I are stronger than ever. I found that when I realised that our reactions to things were "normal" I was better able to deal with it - I hope this knowledge gives you some comfort too.

My worst times were at night when I was dog tired, and after falling into bed would come wide awake and start churning myself up over imagined and real issues. Late at night I would wonder if I had the strength to keep going. But day after day I would awake prepared to fight another day with no thought of failure. And then it would begin all over again the next night ...

I often told my mother when she rang to check on me that I would wait to have my nervous breakdown until Alex was all sorted as I didn't have time for one right now. This became my mantra and it got me through.


Karen
Love of Life to Alex T4N2M0 SCC Tonsil, BOT, R lymph nodes
Dx March 2010 51yrs. Unresectable. HPV+ve
Tx Chemo x 3+1 cycles(cisplatin,docetaxel,5FU)- complete May 31
Chemoradiation (IMRTx35 + weekly cisplatin)
Finish Aug 27
Return to work 2 years on
3 years out Aug 27 2013 NED smile
Still underweight
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Hi, Colleen
I recently read an article on Science Daily (which I cannot put my hand on at the moment) that basically said that if you physically acted happy (smile, great posture) it actually helped mentally. If you - AND your husband - can get out of the house for even a short walk daily it will start to help. I believe that one of the factors that helped my husband's recovery was that we walked our old dog (now waiting at the rainbow bridge) every day that it was not pouring down rain.

My brother-in-law also gave me a quick lesson on meditative breathing - that helped during trips to the doctor, and those bad times at night.

Best wishes - you both will get through this!

Maria


CG to husband - SCC Tonsil T1N2M0 HPV+ Never Smoker
First symptoms 7/2010, DX 12/2010
TX 40 IRMT (1.8 gy) + 10 Cetuximab
PET Scans 6/2011 + 3/2012 clear, 5 year physical exam clear; chest CT's clear of cancer. On thyroid pills. Life is good.
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I think the process mentioned in the Science Daily article is also know as the "Fake it Until You Make It". . . . . . and it does work! One other thing that helped was when I took my son to see a really funny afternoon movie. I actually saw him smile, something I had not seen in a long time! Meditation, getting out, walking the dog (or borrow the neighbor's dog if you don't have one) all help to give both patient and CG a different perspective, and even if it's just for a little while, it sort of gives you a breather and a little renewed energy.


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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Fake It Until You Make It .. that does sum it up pretty well!

Also remember that while family can be wonderful, sometimes talking to a professional - a counselor, pastor or doctor may be what you need to do. I had a pretty spectacular RA flare about a year ago that would have been a lot less painful had I taken my own advice :-).

Remember, it is NOT being selfish to take care of yourself. It is sensible.

Maria


CG to husband - SCC Tonsil T1N2M0 HPV+ Never Smoker
First symptoms 7/2010, DX 12/2010
TX 40 IRMT (1.8 gy) + 10 Cetuximab
PET Scans 6/2011 + 3/2012 clear, 5 year physical exam clear; chest CT's clear of cancer. On thyroid pills. Life is good.
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Sturt1 Offline OP
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I can barely believe this is all normal ... But good to know--- I am at wits end and honestly have thought I can't go on...but then feel bad as its "him " going through this-the pain,the disability etc. then lately with him glaring at me ( not my husband at all) , which upsets me more than I can say...today after a very long day and night spent in the hospital with him -and up all nite, he glared and lashed out verbally...and had to bite my tongue ... It's like sometimes I feel I'm bleeding love and pain and strength over this too for him ,the strength being sucked out of me,until I'm zombie like.... It's like I go from hurt and scorned , to ready to kick him in the butt! Then I offer suggestions from this forum (that he won't go on)- buy the stuff people suggest and things , and does he try it?! I guess if it was me, I feel if I was miserable , I would try anything to make it better? Suggestions would be welcome. Difference btwn male and female perhaps? Idk frown


Colleen
Wife/advocate for husband. 52 yo nonsmoker
ISSC tonsil stage IVa. HPV + Enlarged node & tonsil,
CT 2/13
Bx lt tonsil 3/8,
PET 3/16
Tx started 4/9/2013 Cisplatin x3 and IMRT x 7 wk
Tx end 5/29
GT 5/24-7/17
Officially in Recovery Phase! : )
CT scan 8/13-NED !
CT scan 7/14-NED
5/2018- 5 year anniversary -NED
Joined: Nov 2006
Posts: 2,671
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My son only joined this forum for a short time and only because I urged him. After a short time, he told me it depressed him to see what others were going through. He was already in therapy for depression so I understood. He didn't seem to want my suggestions and I thought maybe it was because I was his mother and being a 33 year old (at the time) it didn't go well with him to have his mother telling him what to do or even making gentle suggestions. So - I just printed out all the positive ideas I found here and I surreptitiously left the pages by his bedside while he was sleeping so he could "notice" them when he awoke. That way, it wasn't his mother telling him what to do. A couple of days later his attitude did improve.

Colleen, the only suggestion I would have is that if you buy stuff to try it out on your husband, just get the very smallest quantity if you can. I had bought the large economy size of a powder that would add calories (don't remember the name) and the health food store guy assured me it was absolutely tasteless but when I put about a scant tablespoon of it in my son's milkshake, and he took a very small sip of it, he said it tasted awful and would have no part of it. Tastes change so rapidly that something palatable one day can be completely horrible the next day.

" T" - If you get something together for Caregiver Survival, depending on what the admins think, I would love to put it on my own personal website where I have a section for OCF related information.


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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It's just as difficult, and definitely more for the patient, and there are two sides of the story. He is probably thinking deep, about life, the past, and the future. When diagnosed with cancer, all of a sudden you think, prepare for death years before many of your peers, significant others will, and that can be difficult, and some don't understand.

Maybe he is being treated differently than before. If he worked, now he is home all the time, which takes some getting used to for both parties. Maybe you would see each other a few hours each day, work, come home and sleep. Now it's 24/7. Maybe his or your routine is now disrupted, and now either has to cater to the other, compromise their routine, which can cause problems.

Maybe he doesn't like all the special attention you or anyone else is giving him, even tine of voice, and just wants to be treated normally. Sometimes it's the opposite, some friends may have disappeared, afraid to talk or visit, treating one like it's the plague.

I go to all my dr visits, tests, diagnosis, surgery by myself, always did. A few times a sibling went with me when I was in very critical condition, and I did not like it at all! They would speak on my behalf, dr speaking to them, like I was invalid or something, asking questions out of line, saying things that were not true, were misinformed, misinformed me, exaggerating, etc. I took back control real quick, and had a few arguments when one stepped out of line, argued with health providers, effecting my treatment or care. I can speak for myself, and more in tune with my needs than anyone is. There is a difference in being on the sideline to help, when asked or planned, but someone taking total control of everything without me involved, asking is not me, and many others, and would not let it happen.

Maybe he is worried about future finances, how the bills will paid. What if he can't work? how will you both manage, including continuation of health insurance.

Sometimes you just want to be left alone, and rest. If he needs something, he will ask or try to do himself.





10/09 T1N2bM0 Tonsil
11/09 Taxo Cisp 5-FU, 6 Months Hosp
01/11 35 IMRT 70Gy 7 Wks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Remove IORT 10Gy PNI
12/13 25 Protons 50Gy 6 Wks Carbo
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fib Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent
02/19 Finally Cancer Free Took 10 yrs






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Posts: 2,671
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Just playing the devil's advocate here, (because there came a time when I was that devil) it is also very difficult for the caregiver who desperately loves the patient and is in a quandary as to what to do - especially when her survivor refuses to take in nourishment or hydration, not able to clearly remember when his meds are due and taking some meds more often than prescribed - and she/he sees him wasting away and in some cases an emergency trip to the hospital becomes necessary. I doubt that in some situations, the patient really knows best. And who is to decide who knows best? For each of us it is a different situation and as a wise lady told me a long time ago from this forum - sometimes you just have to put your nurse from Hell hat on and do what you have to do. At one point in his Tx my son was refusing to eat or drink, and sinking deeper into depression. I finally got my courage up and told him that if he could not start taking something in, then I would call my daughter (a police officer with a gun) to come help me push him into the car and take him to the hospital to have a feeding tube put in him and he knew I would have done it, because I had the phone very handy. For him, that did it. He started eating and drinking again. Some people call this "tough love". Whatever it is, later when I was on the way home, I cried buckets in the car and almost had to pull over I felt so badly for yelling at my son who was suffering so.

Another point I think is important to make is that there has to be a method of recording meds, as well as everything that goes in or comes out of the patient. I made two copies, one for me and one for Paul and I suggested he could record everything so we would both know whether he was on schedule with the meds. We did get to a point where the doctor would not renew the pain meds any more and Paul took to overloading on Ibuprofen. When I saw how much he was taking I called the doctor and was told he was taking way over the daily limit that was safe, otherwise it could damage his liver. I had to hide the Ibuprofen in my car and only give him small daily amounts in the ibuprofen bottle. As a caregiver, what works for one may not work for another. Being a caregiver is a learn-on-the-job activity. You try different things until something works.


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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Sturt1 Offline OP
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Both comments as patient and as cg right on.... Trust me I KNOW this is hard for him . we have been married 25 years... I can see..., and I know it's hard on caregiver as well and you can't fully appreciate what the other goes through unless you have done it before yourself, I get it. My heart is breaking for him.Literally feels like my heart is being cored out of my body watching him suffer so, and wasting away. I purposely am careful ( trust me) what I say/ do as he does not want to be mothered, treated differently etc. but what do you do when they are hurting themselves, sometimes you have to intervene.....we just came home yesterday from having a fdg tube in ( 50 lb weight loss) and he took 1/3 of what was prescribed yesterday, and just announced that's all he's doing today too?! Okkkkk? So why did we bother getting one? Apparently sips of water have been working so well?! He told me he was the patient and to leave him alone. I gave him a copy of his orders and said he might want to review calories and water recommended on a daily basis first and we are now leaving him alone... If looks could kill, those glares would have done their job a long time ago! So what the heck... Am I supposed to let him loose another 50 lbs.... ? Was hoping he would get some calories on board -and some good fluid intake before Tuesday when we are supposed to get final chemo ( which has already been held once)...


Colleen
Wife/advocate for husband. 52 yo nonsmoker
ISSC tonsil stage IVa. HPV + Enlarged node & tonsil,
CT 2/13
Bx lt tonsil 3/8,
PET 3/16
Tx started 4/9/2013 Cisplatin x3 and IMRT x 7 wk
Tx end 5/29
GT 5/24-7/17
Officially in Recovery Phase! : )
CT scan 8/13-NED !
CT scan 7/14-NED
5/2018- 5 year anniversary -NED
Joined: Jul 2012
Posts: 3,267
Likes: 1
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Thanks Colleen. I may be difficult to some, but I'm not, we'll, lets be polite, and say be unwise. I know my illness pretty well, side effects, treatments, but know when to raise the white flag lol, and seek help, and most always listen to, and follow my doctors suggestions, advise.

I also know what it's like to be a caregiver, and see a family member suffer, die. I had three brothers suffering illnesses that either paralyzed or severely debilitated them, causing their deaths at young ages, 26, 48, 52. It was not easy after two had passed, Then felt disappointed for my third that I coud not help for a while when diagnosed with cancer, and unfortunately, he passed away from a UTI two months later, while I was in the hospital myself, near death from chemo. I felt guilty I wasn't around, thinking things may have been different if I was, and believe my brother was so worried about me, he did not want to trouble anyone, but it went too far, and shut down his kidneys. I could not even go to his funeral being in critical condition, and doctors would not let me leave. I has to grieve his loss from my hospital bed, and finally went home 4 months later. Its difficult even now, three years later.


10/09 T1N2bM0 Tonsil
11/09 Taxo Cisp 5-FU, 6 Months Hosp
01/11 35 IMRT 70Gy 7 Wks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Remove IORT 10Gy PNI
12/13 25 Protons 50Gy 6 Wks Carbo
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fib Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent
02/19 Finally Cancer Free Took 10 yrs






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Posts: 42
Sturt1 Offline OP
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So sorry for all you have gone through. We too have had our share of loss and pain. None of us know why things happen or what is in store for any of us. But it is hope that we must all keep.


Colleen
Wife/advocate for husband. 52 yo nonsmoker
ISSC tonsil stage IVa. HPV + Enlarged node & tonsil,
CT 2/13
Bx lt tonsil 3/8,
PET 3/16
Tx started 4/9/2013 Cisplatin x3 and IMRT x 7 wk
Tx end 5/29
GT 5/24-7/17
Officially in Recovery Phase! : )
CT scan 8/13-NED !
CT scan 7/14-NED
5/2018- 5 year anniversary -NED
Joined: Oct 2012
Posts: 1,275
Likes: 7
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Colleen, the 50 lb weight loss does not sound good at this juncture. Is there a dietitian, a doctor or a nurse case manager who can talk to your husband about the importance of taking in enough supplement everyday? This way, it is doctor's orders to the patient and not you nagging him some more. It can be really frustrating when as the caregiver, we feel our efforts to help the patient are being obstructed by the very person himself/herself. Can he understand that yes while he is the patient and it is his body, whatever decision he makes has a huge impact on your emotional well-being and your future as well? Can you talk to him about these things when you catch him in a more receptive mood?


Gloria
She stood in the storm, and when the wind did not blow her way, she adjusted her sails... Elizabeth Edwards

Wife to John,dx 10/2012, BOT, HPV+, T3N2MO, RAD 70 gy,Cisplatinx2 , PEG in Dec 6, 2012, dx dvt in both legs after second chemo session, Apr 03/13 NED, July 2013 met to lungs, Phase 1 immunotherapy trial Jan 18/14 to July/14. Taxol/carboplatin July/14. Esophagus re-opened Oct 14. PEG out April 8, 2015. Phase 2 trial of Selinexor April to July 2015. At peace Jan 15, 2016.
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Colleen - I can SO relate to what you are experiencing. . . it's like walking on egg-shells, not knowing what to say that might set him off or how to say it. I will never forget how rough it was on my son. I tried every way I could think of to help him find some things he could control . . . like "do you want chicken broth or beef broth?" or giving him 1,2, 3 choices so he could hold up one, two or three fingers when it was too painful to talk. I couldn't get him to come and stay with me at at my house because of his feeling of loss of control of his own place and having to tell his friends he was living with his mother. (I told him he could tell them I was living with him but that didn't impress him). At one point, I finally exploded and told him that I was doing everything I could to help him survive (driving to appointments, picking up prescriptions, laundry, cleaning, phone calls, food prep, errands, paying bills, and litter pan duty for 3 cats, etc. etc) and I felt he could at least help me out a little with doing what he needed to do for his own care. He did try a little after that. I'm not saying it's time for the Nurse from Hell to make an appearance, but if you think it could work, you could try it. You can always ask for forgiveness later. Your feelings and well-being are important, too. Don't worry too much about the glares. Everyone here is smiling at you, cuz you are a great caregiver.


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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Tomorrow depending on labs we are to be admitted for final chemo, and final RT is weds! I plan on updating his doc and PA while we are in re his only taking two cans of the six prescribed fdgs. I did put my mean nurse hat last nite,when he refused any more of the fdg.....today he actually took four cans... Progress? He has not used fluoride trays, have no idea if he is taking his meds, he wont try the suction machine, prefers to run to bathroom. he had been resistant to using water pik too,bit i briefly told him how to use, filled it, and put a stickie on it that said "Try me " and well now I hear him using it frequently now....everything is a struggle.


Colleen
Wife/advocate for husband. 52 yo nonsmoker
ISSC tonsil stage IVa. HPV + Enlarged node & tonsil,
CT 2/13
Bx lt tonsil 3/8,
PET 3/16
Tx started 4/9/2013 Cisplatin x3 and IMRT x 7 wk
Tx end 5/29
GT 5/24-7/17
Officially in Recovery Phase! : )
CT scan 8/13-NED !
CT scan 7/14-NED
5/2018- 5 year anniversary -NED
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Wow, Colleen - that is progress! I love your creativity in putting a little stickie on the water pik saying "Try me"! That way it's the water pik telling him what to do and not you! laugh


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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It's progress, definitely. Hopefully, after the doctor's visit, he will come to his senses and be more co-operative. One time I was with my husband in the Radiation Nursing Clinic and we overheard a doctor saying to a patient in the next cubicle, "If you don't eat, there's nothing I can do for you." It was that blunt.


Gloria
She stood in the storm, and when the wind did not blow her way, she adjusted her sails... Elizabeth Edwards

Wife to John,dx 10/2012, BOT, HPV+, T3N2MO, RAD 70 gy,Cisplatinx2 , PEG in Dec 6, 2012, dx dvt in both legs after second chemo session, Apr 03/13 NED, July 2013 met to lungs, Phase 1 immunotherapy trial Jan 18/14 to July/14. Taxol/carboplatin July/14. Esophagus re-opened Oct 14. PEG out April 8, 2015. Phase 2 trial of Selinexor April to July 2015. At peace Jan 15, 2016.
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Sorry to hear your patient can be so stubborn. Love the stickie idea!!! Keep up the great work!



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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Honestly you are doing a great job. Please don't be too hard on yourself. As you can see, we've all been there, whether patient or CG. Good job hanging on!!
Kathy


Kathy wife/caregiver to:
Kevin age:53
Dx 7/15/11
HPV16+ SCC Stage IV BOT/R
Non smoker, casual drinker
7/27/11 Cistplatin, taxotere,5FU 2/3week sessions, followed by IMRT 125cgy x 60 (2x daily) w/Erbitux weekly. Last rad 10/26/11. Last Erbitux 10/27/11
PEG placed 9/1/11 Removed 11/8/11
Clear PET 10/12 and 10/13 and ct in 6/14
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So we completed tx yesterday,and he rang the bell formally signaling tx complete! Was wonderful to leave, some sadness leaving some of the other pts/ families behind. Promised to keep all in our prayers. So trying to get him started with good habits with his diet/ nutrition. While in patient PA told him it was ok if he couldn't get up to the 6 cans yet.. Wanted her to be a little tougher like the dietician was! I need to keep track of his intake closely as his recovery is the goal....made a informal intake log. Hoping he would buy into it knowing/ seeing the daily goals.....so far only me filling out....however, I successfully got 52 ounces water in him,he didn't feel like doing any of the feeding today because he felt bloated.(so I know I'll probably hear from some in disagreement), but while he was sleeping, I was able to sneak in 3 cans..... I feel I did pretty good . He didn't do that bad either. Up for short period on computer, took his shower and did some correspondences he needed to do...no growling ! he looked pretty good today. Tomorrow we start our hydration days so that will help too. Hoping this will get him over the hump and kick start his recovery.....can hardly believe this was day 1 -Recovery Phase !


Colleen
Wife/advocate for husband. 52 yo nonsmoker
ISSC tonsil stage IVa. HPV + Enlarged node & tonsil,
CT 2/13
Bx lt tonsil 3/8,
PET 3/16
Tx started 4/9/2013 Cisplatin x3 and IMRT x 7 wk
Tx end 5/29
GT 5/24-7/17
Officially in Recovery Phase! : )
CT scan 8/13-NED !
CT scan 7/14-NED
5/2018- 5 year anniversary -NED
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Wooo-Hooo!!!! Congrats on finally ringing the bell!!!! Im sure it was a great accomplishment for you both.

You are doing such a great job with your care giving. Im impressed how you snuck 3 cans in while he slept. Very crafty! Make sure if you do that your husband is laying with his head inclined or it could cause a problem with the formula causing aspiration. That darn PA! They shouldnt be talking about dietician things, they should be backing up the dietician.

Hydration is a very good experience, at least it was for me. I would walk out of there feeling so much better. Please check back in with me and tell me if the hydration had the same effect on your husband.

Best wishes with everything.


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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Congratulations!


10/09 T1N2bM0 Tonsil
11/09 Taxo Cisp 5-FU, 6 Months Hosp
01/11 35 IMRT 70Gy 7 Wks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Remove IORT 10Gy PNI
12/13 25 Protons 50Gy 6 Wks Carbo
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fib Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent
02/19 Finally Cancer Free Took 10 yrs






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Congrats on completing the treatments!

You mentioned that "because he felt bloated". If he is taking any pain meds, constipation can be a real problem - even if he is only drinking meal replacements! He will feel more like eating if things are moving along smoothly. Your PA or oncology nurse will likely have some suggestions.

Maria


CG to husband - SCC Tonsil T1N2M0 HPV+ Never Smoker
First symptoms 7/2010, DX 12/2010
TX 40 IRMT (1.8 gy) + 10 Cetuximab
PET Scans 6/2011 + 3/2012 clear, 5 year physical exam clear; chest CT's clear of cancer. On thyroid pills. Life is good.
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Wonderful news, Colleen! Sounds like your husband is doing so much better! As Maria mentions, it might be a good idea to check on how things are moving out and not just your husband's nutrition intake. My son also had constipation - pain meds can do that. I remember having to get stool softeners for him over-the-counter at the drugstore.


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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He always feels better with the hydration too. : )

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Yes we have had issues with constipation, have an arsenal of remedies on hand .

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Glad that you have a variety of remedies. Some on this board refer to cancer as the big "C" and constipation as the little "c".


CG to husband - SCC Tonsil T1N2M0 HPV+ Never Smoker
First symptoms 7/2010, DX 12/2010
TX 40 IRMT (1.8 gy) + 10 Cetuximab
PET Scans 6/2011 + 3/2012 clear, 5 year physical exam clear; chest CT's clear of cancer. On thyroid pills. Life is good.
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The little "c" is not so little to the one experiencing it. In fact, I've had friends who get really grouchy when in the throes of the little "c". So it's good to keep on top of it - or ahead of it. We had a really good thread on this some time ago with some great suggestions on various ways to cope. Hope everything comes out ok. :-)


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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Congratulations on completing treatment. He will start feeling better in a couple of weeks and you will too.


Gloria
She stood in the storm, and when the wind did not blow her way, she adjusted her sails... Elizabeth Edwards

Wife to John,dx 10/2012, BOT, HPV+, T3N2MO, RAD 70 gy,Cisplatinx2 , PEG in Dec 6, 2012, dx dvt in both legs after second chemo session, Apr 03/13 NED, July 2013 met to lungs, Phase 1 immunotherapy trial Jan 18/14 to July/14. Taxol/carboplatin July/14. Esophagus re-opened Oct 14. PEG out April 8, 2015. Phase 2 trial of Selinexor April to July 2015. At peace Jan 15, 2016.
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Way to go Colleen, 3 more tough weeks to go. My goal at that time was just "get thru the next feeding". It sucked, but improvement is not far off. Once he sees "Improvement", watch his attitude improve.


Hockey Dad
43, No smoke, Small BOT HPV+16
8/30/12 Biopsy found SCC in Lymph node (removed)
9/19 DX 4a T1N2aM0
10/1 TX 2x Cisplatin 35 IMRT 70 gry (Done 11/15)
PEG tube in 11/7. Out 1/4, Back at work 2/4/13
PET 2/13 Clear, 10/16 all Scopes Clear, 4/14 Chest X-ray Clear, 5/14 Abdominal ultrasound Clear, 8 yrs clean!!!
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So we have entered week two of the recovery phase. We have some issues trying to get the prescribed 6 cans in per day. He has been getting the water intake in, but only averaging 2 cans of the 6 he is supposed to be doing.. Have had some not so good falling outs about this over the wknd as so concerned as he is just wasting away on me! Took a hands off approach since, thinking maybe if i just let him do...he will step up to the plate but still only two cans.To me I feel like he is sabotaging his own recovery. I did call the PA and told her what was going on. She said she would talk to him that day as he was coming in for IV hydration. But she felt right now if he was getting the water in that was good and he could work on getting the nutrition up. I totally disagree with that, and think we should be working on a plan to get the prescribed ammt in- whether it be from continuous feeds during nite or ? Any pros, cons or suggestions. He is taking sips of water,tried some jello, not so good. Made him some mashed potatoes as MD stated thicker stuff would be easier....but he was,not interested..input appreciated, thx.


Colleen
Wife/advocate for husband. 52 yo nonsmoker
ISSC tonsil stage IVa. HPV + Enlarged node & tonsil,
CT 2/13
Bx lt tonsil 3/8,
PET 3/16
Tx started 4/9/2013 Cisplatin x3 and IMRT x 7 wk
Tx end 5/29
GT 5/24-7/17
Officially in Recovery Phase! : )
CT scan 8/13-NED !
CT scan 7/14-NED
5/2018- 5 year anniversary -NED
Joined: Sep 2006
Posts: 8,311
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Listen I was just as stubborn probably more so than he sounds and I was not getting enough cans post Tx and one day appx 2 weeks POST Tx I was so weak, so frail, so ashen looking my wife said she was taking me to the hospital. I initially refused and she said "OK so just lie there (in the bed) and DIE!" With that she left the room. I couldn't talk so I had to wait for her to come back which she did after a few minutes. I was ready to concede. I was admitted and the docs said I was 24 hours from dying. They inserted a nasal tube in me; I used it for 2 weeks; pulled it out at home myself and it saved my butt! Of course she was the one that really saved me.

Moral is to have them insert the nasal tube. It only takes a minute or so and it was totally pain free. It makes a HUGE difference because there is no longer any pain from trying to swallow and it cured my nausea which was my main nemesis during recovery. As I said, after I knew I didn't need it anymore I called my doc and he gave me the OK to pull it out myself. The rest has been all up hill except the getting older part.


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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I was on TPN feedings for almost 4 months after treatment along with 1-3 bags of fluids per day. I was consuming over 4,000 calories a day for months with no weight gain and then the floodgates opened. I gained 11 one week and 50 in a month. If he is managed by a doctor and they are still doing labs regularly, they should guide you in the right direction. In cancer world there is one main number they look at for nutrition, albumin. My mother had normal levels at 50lbs a week before she died.

Have you considered having your husband talk to a cancer psychiatrist? They deal with so many cancer related issues that they may help him understand the importance as well as the impact on you. Best wishes.

Ed


SCC Stage IV, BOT, T2N2bM0
Cisplatin/5FU x 3, 40 days radiation
Diagnosis 07/21/03 tx completed 10/08/03
Post Radiation Lower Motor Neuron Syndrome 3/08.
Cervical Spinal Stenosis 01/11
Cervical Myelitis 09/12
Thoracic Paraplegia 10/12
Dysautonomia 11/12
Hospice care 09/12-01/13.
COPD 01/14
Intermittent CHF 6/15
Feeding tube NPO 03/16
VFI 12/2016
ORN 12/2017
Cardiac Event 06/2018
Bilateral VFI 01/2021
Thoracotomy Bilobectomy 01/2022
Bilateral VFI 05/2022
Total Laryngectomy 01/2023
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My husband noted that trying to eat during and immediately after treatment was a form of operant conditioning: every time you eat it hurts and tastes bad, so you are conditioned to not want to eat in your very own psychology lab experiment. He used to joke about the test lab rats getting zapped every time they went to get a food pellet. I think that it helped him when he realized what this was part of what was going on.

I agree with David about the nasal tube - nutrition without the 'zap'. It WILL get easier for him to eat, but it will take a while.

Maria

Maria


CG to husband - SCC Tonsil T1N2M0 HPV+ Never Smoker
First symptoms 7/2010, DX 12/2010
TX 40 IRMT (1.8 gy) + 10 Cetuximab
PET Scans 6/2011 + 3/2012 clear, 5 year physical exam clear; chest CT's clear of cancer. On thyroid pills. Life is good.
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That's conditioned food and taste aversion, similar to Pavlov's dog. They say use a strong food stimulate before treatment like candy or something just before treatment so not to remind you of the bad taste later on from the last food you ate or even smelled. It is very psychological, sometimes, even color of room, ambience, food appearance, eat food that are familiar not exotic or new. Meats, certain proteins have more taste aversion, certain carbs less. Like Ed mentioned, counseling, psychologist is used to the see reason why there may be a mental reason causing anorexia, wasting or cachexia.


10/09 T1N2bM0 Tonsil
11/09 Taxo Cisp 5-FU, 6 Months Hosp
01/11 35 IMRT 70Gy 7 Wks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Remove IORT 10Gy PNI
12/13 25 Protons 50Gy 6 Wks Carbo
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fib Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent
02/19 Finally Cancer Free Took 10 yrs






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He has a peg which was placed 5/24 .doing 2 out of the 6 cans prescribed.


Colleen
Wife/advocate for husband. 52 yo nonsmoker
ISSC tonsil stage IVa. HPV + Enlarged node & tonsil,
CT 2/13
Bx lt tonsil 3/8,
PET 3/16
Tx started 4/9/2013 Cisplatin x3 and IMRT x 7 wk
Tx end 5/29
GT 5/24-7/17
Officially in Recovery Phase! : )
CT scan 8/13-NED !
CT scan 7/14-NED
5/2018- 5 year anniversary -NED
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Colleen, based on where your husband is on his treatment I would suspect he is not wanting to have any cans of anything. The role you are in and especially just after treatment is the toughest role, in my opinion. I've been on both sides. It takes a lot of determination and perseverance to keep pushing while you see the patient falling so short of what the doctors all say is the minimum requirement. It will help facilitate healing if we all just listen to them but we don't. He is so fortunate to have you by his side, cracking that whip, if I may, with nothing but love surrounding him! Come here to vent and keep pushing. As soon as he hits that start pushing protein shakes or something healthy with calories to keep the swallow working so things don't get much more complicated.

This was the roughest patch for me for sure. Hang in there it will get better!

Ed


SCC Stage IV, BOT, T2N2bM0
Cisplatin/5FU x 3, 40 days radiation
Diagnosis 07/21/03 tx completed 10/08/03
Post Radiation Lower Motor Neuron Syndrome 3/08.
Cervical Spinal Stenosis 01/11
Cervical Myelitis 09/12
Thoracic Paraplegia 10/12
Dysautonomia 11/12
Hospice care 09/12-01/13.
COPD 01/14
Intermittent CHF 6/15
Feeding tube NPO 03/16
VFI 12/2016
ORN 12/2017
Cardiac Event 06/2018
Bilateral VFI 01/2021
Thoracotomy Bilobectomy 01/2022
Bilateral VFI 05/2022
Total Laryngectomy 01/2023
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Collen, you can lead a horse to water but you cant make them drink. I know its not easy for anyone right now. Im sure your husband feels lousy and you have to be getting frustrated with his stubbornness and lack of dedication to following instructions. If you arent annoyed, then you are a saint! Being a caregiver sure is one heck of a difficult job! But you do it very well smile

One caregiver here got so annoyed with their patient they told them either you listen to the doctor or I wont help you anymore as there isnt anything I can do. That was all it took for their patient to snap out of their funk and get with the program.

Honestly, if your husband would give you just 3 days to turn him around and take in the proper amount of formula and water he would feel so much better. Please ask him to give it a try and if he doesnt feel any better then he can continue with his own plans of only 2 out of 6 cans.

He can also still get hydrated which will help him too, get the doc to write a prescription for at least 2x a week to get hydrated. That will help make a big difference.

Hang in there, he is almost out of the tunnel and very soon he will begin to start having some better days. Sooner if he would comply with the proper intake but that is his choice.



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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"OCF Canuck"
Patient Advocate (old timer, 2000 posts)
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"OCF Canuck"
Patient Advocate (old timer, 2000 posts)

Joined: Dec 2010
Posts: 5,260
Likes: 3
yeah... sounds as though you may need to bargain with him. My husband can be difficult too. He cut his hand last week. And waited until saturday to show me his hand which was at the time swollen, red and painful. It had been like that a few days. I saw it immediately and sent him to the walk in clinic for antibiotics!!!! MEN! I asked him how that whole - waiting to see if it gets better - thing was working for him. Amputation or a systemic infection was very possible if he had left it much longer.

Anyway - we had a scare a while back - we thought he might have colon cancer.

I said to him after the fact - the difference between he and I - I was dx'd handled my own care and was my own advocate. I read, did some research, and decided what I could do to help my self recover and changed my diet to be more healthful etc... I did what I could to try and prevent a recurrence (though there is of course no promise of that) I told him - if giving up certain things, and doing certain things would make me feel better and help me recover I would do it gladly. Why wouldn't you...? he would rather just plod on and suffer the consequences.

A good friend who is 5'6 easily 250 - lost his wife due to cancer 8 months ago - he's the only parent his children have now - this should be the impetus to get himself into shape and stay that way if for no other reason than his kids. He told me yesterday... I have to be on pills for life, for GOUT and HIGH Cholesterol. I told him - change what you put in your mouth things will improve.

People know what they should do but tend not to anyway.

hugs.


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
Joined: May 2013
Posts: 42
Sturt1 Offline OP
Contributing Member (25+ posts)
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Contributing Member (25+ posts)

Joined: May 2013
Posts: 42
Cheryl think that is a big difference btwn men and woman.... If someone said do this, you will feel better... I would and also would be researching for anything else that would help..... Not sure why men are so resistant to trying, or listening to professionals who do this for a living and have knowledge ,skills and ability to help ...drives me crazy!


Colleen
Wife/advocate for husband. 52 yo nonsmoker
ISSC tonsil stage IVa. HPV + Enlarged node & tonsil,
CT 2/13
Bx lt tonsil 3/8,
PET 3/16
Tx started 4/9/2013 Cisplatin x3 and IMRT x 7 wk
Tx end 5/29
GT 5/24-7/17
Officially in Recovery Phase! : )
CT scan 8/13-NED !
CT scan 7/14-NED
5/2018- 5 year anniversary -NED
Joined: Jan 2013
Posts: 1,291
Likes: 1
Patient Advocate (1000+ posts)
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Patient Advocate (1000+ posts)

Joined: Jan 2013
Posts: 1,291
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[quote]People know what they should do but tend not to anyway.[/quote]Boy, you are the tough one. In fact, some truth in there adds to the sting.

Like many humans who choose to go the doctor later than earlier, I had an similar infection, started out rather minimal, then over several days grew to a larger red, sensitive, pretty puffy sore, I do not think it had open sores at that time. Pretty uncomfortable, and like you, my wife was getting all over me to go get it looked at.

When, after a few days of extra prodding and swift kicks in the ass, our family MD saw she, she just BARKED at me, and basically told me I was a fool and thee infection I had was a grain of sand distance from being full on systemic infection, I think she called it staph. Pretty simple sounding but I guess actually life threatening.

After than I am learning that not going to the doctor when obvious, is not a sign of being a tuff guy but a stupid guy.

So what do I do -- wait longer than I should have to be seen for the growth in my neck. hummm... at least I was lucky and was told the wait probably was not a factor in any pending death sentence.

Maybe I have learned my lesson. Hope I live long enough to claw back some benefits from life lesson slow in coming.
don


Don
Male, 57 - Great health except C
Dec '12
DX: BOT SCC T2N2bMx, Stage 4a, HPV+, multiple nodes
1 tooth out
Jan '13
2nd tooth out
Tumor Board -induction TPF (3 cycles), seq CRT
4-6/2013
CRT 70gr 2x35, weekly carbo150
ended 5/29,6/4
All the details, join at http://beatdown.cognacom.com
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