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Joined: Dec 2006
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Well, he wrecked the car this morning - everyone is fine, except for the Challenger....then to boot went to the Dr. as he had a horrific nite caughing and told me to get an appointment today. The Dr. wanted to hospitalize him so that he could see a pulmonary Dr. right away, get a CAT scan and go on IV antibiotics. He wouldn't do it!!! I'm to the point of being done with all of this - - - I told him in front of his Dr. that he had no right to take up the Dr.'s time, leave other pationts that had appointments out in the waiting room way past their scheduled appointment (because she agreed to see us as soon as we got there), that were actually SEEKING HER ADVICE AND LIKELY TO TAKE IT, only to ignore her and still not be any better. I let him have it - he told the Dr. that he and I are "obviously not on the same page", but we would deal with it at home. I walked out. Watched tornadoes for an hour drop out of the sky here in Dallas hoping that one would drop on me. So I'm off to bed, still reeling from the heap of rubble in our garage and the coughing/gagging that I've been listening to for the past 24 hrs....feel like I'm just spinning my wheels and feel bad for the medical profession when it meets such obstinate people as Jim.....thanks for listening OCF....



Caregiver to Husband 50 yrs.young-non smoker/non-drinker; Stage IV - all treatments stopped August 2009
Lost the battle November 23, 2010
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Thinking and praying for you both. I hope you feel free to continue to vent. We are hear to listen even if we don't have any great words of wisdom. Being a caregiver is so hard and often a thankless job.


Sharon, 57; Hard Palate; T1, High Grade, DX 6-12-09, Surgery, maxillectomy 7-14-09, 33 RT (9-2-09 to 10-19-09); Prothesis (obturator). None smoker, non drinker.
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I'm so sorry you are both having to go through this. As a CG I know how difficult it is to know when to be firm or when to be gentle or just give a hug. I think it must have helped that you were able to vent at the doctor's office, though. At one point, when my son was not following his meds schedule and being depressed and irritable, someone here told me to put my "nurse from hell" hat on and I did. I told him that I loved him so much and wanted him to get better but I felt like I was the only one doing all the work of fighting the cancer and that he had to help me out at least a little bit and then I stomped out. Of course I felt so guilty afterwards and cried a lot because I knew it was rough on him. I feel for the two of you - cancer is such a horrible, unkind disease - it makes one feel so out of control. We all fight it in different ways and maybe being obstinate is just one way of being able to fight it or try to have some control. Please know that we all care about both of you so much and hoping for things to go a little smoother.


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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We can be a handful at times!! Have you tried a baseball bat?


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'm sorry. I'm here to listen.
Ginny


Ginny, spouse of MikeG. SSC BOT T2N1M0 Stage III, Dx 06/27/06 at age 52, Tx 07/31/06 through 09/28/06 Chemo Cisplatin & 5FU x2, Radiation x42. Cancer free and doing well.
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I'm so glad that you spoke up. I rarely felt guilty when I yelled at my husband. I looked at it as part of being his caregiver.
Obviously,I never wanted to yell at someone who felt as bad as he did but sometimes it was the only way to get through to him. I think feeling sick, discouraged, angry and all that other stuff can cloud one's judgement. So, if I felt strongly that my husband's judgement was off I let him know it.
I tried to pick and choose my battles but I just knew that sometimes there would have to be a battle.
How smart of you to come here and vent.


CG to Spouse BOT, Chemo and radiation started on March 29,2010
Ended on May 14,2010. LET THE HEALING BEGIN!!!
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Coping in TX...I understand where your coming from you brought back a few memories. My husband and I would argue about who was driving him to radiation and his Dr. appts. He thought I should rest being his caregiver and I thought there is NO way you can drive and I want to talk to the Doctor's. I finally won after taking the keys away from him. I remember one time I went to the store he wanted to mow the lawn, no way in his condition, I would mow it when I got back. I went to the store when I came around the corner there was my husband sitting in the garage almost passed out. Four neighbors were mowing our lawn with their lawn-mowers, what a sight.

TX, they feel so helpless seeing you do all the work, they get mad and say things they don't mean. If he isn't on an anti-depressant I would ask for one. Finally my husband was put on Zoloft that seem to calm him down.

Vent away I certainly did.


SCC. of the left lateral tongue, anterior two thirds, T1 possibly a T2.
Left partial glossectomy, left selective neck dissection 4/21/09. Nodes clean, No Rad, No Chemo.

CT Scan 9/11 clean, CT Scan 9/12 clean


Moffitt Cancer Center in Tampa, FL. A+.

My hometown Lockport, NY.



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Boy, I can relate to this also. I think patients sometimes feel that they have NO control over what is being done to them. It is often a whirlwind of activity with doctors, nurses, drugs, treatments, be here, do that, don't do this. Understandably, it is overwhelming and confusing. You, as the wife and caregiver (a double whammy), are on the receiving end of his frustrating behavior. I agree that when you stand up for yourself, you establish ground rules. At one point, my husband became obstinate and very crabby when all I was trying to do was be of help. I told him his behavior was inappropriate and unacceptable. And then I gave myself a break and him some space. As he got healthier, he could do more for himself. I may have been hovering a little too much.

I know your situation is a little different, but it does sound like he wants desperately to maintain some independence. Clearly, he is not able to mow the lawn or drive alone. Can you both find other things he can do independently for himself or your family? Like make your coffee in the morning, get the mail from your mailbox, put the cereal box on the table before breakfast. It is hard for anyone to give up the role they had assumed their whole life.

Kudos to you for sticking up for yourself. And ditch the guilt...you have an enormous and difficult job as a caregiver. All my best to your and your family--

Anita


Anita (68)
CG to husband, Clark, 79,
DX SCC 11/07, T4N0Mx, PEG 1/08, RAD, post rad infection 3/08,
HBOT 40 dives, ORN, Surg 11/09 mandibulectomy w/fibular graft.
Plastic Surg 4/10, 12/10, 3/11, 10/11, 4/12, 10/12. All PETS clear,
PEG out 1/11. 6/11 non union jaw fracture
Fractured jaw w/surgery 7/14
Aspiration pneumonia 7/21, 10/22
PEG 7/21
Botox injections
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I am so sorry that you are having such a tough time. My ex-hubby who had Hep-C and passed last Oct was also horrible about being medically compliant and it just frustrated the hell out of me.
I hope you will continue to vent as necessary and that you will find some ways to nurture yourself.

When I was doing an internship, I heard a therapist talk about depression in terms of a water pitcher, it is such a good analogy .. goes like this

Picture yourself as a water pitcher.... every day people are coming at you with their cups (home, work) and you are pouring your water into their cups. If you don't replenish the water, over time you become empty and are drained dry.

I hope you will make a special effort (even if it's just an hour or two) to replenish yourself. Some things that are helpful to me are guided meditations, bubble baths, a late movie, observing nature. There are some online meditations that are free to listen to.. available from Kaiser Permante... just do a search for Kaiser permanete meditations and you'll find the page.

You're in my thoughts and prayers.


Aunt diag. 2/4/10 with SCC Stage I/II on left side of tongue. Surgery 2/19/10 part. gloss./neck diss. on left side/free flap from chest muscle. TI/II,NO,MO. Clear margins with perineural invasion. Started rads 4/8/10 - 35 treatments, finished 5/26/10.
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Coping in Texas,
Having been a caregiver (and still am) to a very difficult man, I have an idea of how hard this is for you. Cancer has brought out the best and worst in Gordon and myself, and I'm sure this is true for a lot of patients and caregivers. I think there is a control issue and Jim is trying desperately to regain control over his life. Very hard to put up with behaviour like this and you do have to be firm and set boundaries. Gordon and I have had some very distressing fights and have said awful things to each other. Maybe telling Jim how much you love him (and you obviously do, or his behaviour wouldn't bother you so much) and letting him make a few mistakes might help - although wrecking the car is definitely not OK! My heart goes out to you.
Anne

Last edited by Elianne; 09-09-2010 08:33 PM. Reason: afterthought

Anne - CG to Gordon (59), non-smoker/non-drinker. SCC, BOT, HPV 16+, stage 3. Jan./10 - radical neck dissection to remove 48 lymph nodes, 1 node pos. Apr. 23/10 - finished 35 rad. and 3 cisplatin. Jul. 22/10 - PET scan clear.
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