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#81906 10-11-2008 12:36 PM
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Hi all,

Still keeping my positive outlook here but lately it is everything I can do to keep up my energy. (before you ask...yes, I'm eating and rest? well, comes and goes) And I feel so guilty about being so tired all the time.
Like Hubby isn't!!?
Every minute of every day is used up. Time to eat Hun, time for meds Babe, push those fluids Sweetie, lets flush your Peg, time to cool and moisturize your neck Darling ...
I feel so guilty every time I have to bother him with something else that has to be addressed. I know he knows it has to be done ( and he never complains) but I feel like I'm torturing him all the time. It just wears me down!
Just wanted to put that out there. I haven't noticed any of the other CG's express any of these feelings and hope I'm not the only one. I figure no one really wants to voice their own discomfort thru all this becuz it really is minor in comparison to what our Loved ones are going thru.
~Ija~



Ija wife-husband 47y healthy nonsmoker,nvr chewed.Dx SCC 01/05 primary left anterior toungue w/2 surgeries 02/05 no rad/chemo recurrence 12/07 no rad/chemo. 07/08/08 modified lt radical neck disection 3 nodes removed 2 pos SCC. TX 090808 taxol & carboplatinx7 radx37 w/ethyol.
MS T #81909 10-11-2008 01:14 PM
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hi
Sounds like you have a wonderful relationship and through all of this when it is over and all is said and done maybe you can discuss something pleasant during what you seem to think is torture. My friend always talks to me about going on a trip after this is over. Maybe a second honeymoon is in order. To dream together may shed a little light. You are doing such a great job and it is not easy taking care of us. I would love for my husband to say home and take care of me. Maybe inbetween your tasks do remember to take time for yourself hopefully can find time even to read, bath or just sit and listen to favorite music and enjoy a cup of tea or coffee. I hope you can get some sleep...

I remember when my friend took care of her mother who died fighting cancer and how tired she was and you are not alone. Do you have anyone who can take care of hubby for an afternoon or evening that you can just relax go sit in a park...don't feel guilty about doing that cause when you relax and do something for yourself you will be better to take care of hubby. Do take time for yourself it will help...


Dianne..treatment at cc at Victoria Hospital, London, Ontario...insulin dependant, Surgery Sept 8/08 Tracheotomy,composite resection and bilateral neck dissection, left radial forearm free flap... T2N0 squamous cell carcinoma. No radiation A little over 2 yrs clear YAY
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Ija,

Believe me, you are very normal. As much as you love your hubby and want to be a good caregiver, it takes a lot out of you. We are one year out from Bill's last treatment, and I am just now crawling out of the tunnel and feeling back to normal...(just in time for everything else around to blow up!)
You do need to take care of yourself...eat, sleep and get out a little (I would go fun shopping while Bill was having chemo - kept me sane.) I noticed for sure by 9:00 at night that I was done...wanted to be left alone, couldn't handle lots of aggravation and I would be very happy that Bill was in bed asleep. By morning, and after a good nights sleep, I would be ready to take care of him. So watch out when you feel very down or scared, or just negative....you may just need to rest or sleep.

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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Ms T

Boy is your husband one lucky man!!! You are so wonderful to do all those things.

Im not a caregiver, but a patient who didnt have much help going thru this. I basically had a driver and thats about it. Nobody checked on me about meds/food/swallowing/PEG tube/calories/hydration, and the other never ending things that go with OC.

No wonder you are beat!!!! Just wondering if you could have your husband pick up a couple of these things to care for himself. That might make it easier on you and him a bit more self reliant. I know how bad it is going thru tx but he should be able to do something to help himself. He needs to know as much as you do about his care. What would happen if you got so run down you go ill too? Please take care of yourself so you are able to care for him.



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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Ija, you are right, as a caregiver it is hard to admit how difficult it can be. The first two months following surgery, I felt totally out of it, dead tired all day long, then after getting my wife to bed at night, would try to find answers on this website leaving me more and more tired. One thing that has helped the last two weeks has been getting a feeding pump so that we could get down to just two feeding during the day. It has freed up time so that I could get back to work, keep up with the kids and laundry. Also, my wife has taken over some of the responsibility for some of her medications and hooking up a feeding from time to time. I do feel somewaht guilty but I think it also is important that my wife has a purpose to get up and be active during the day. I am sure there will be days (like today) where she is not up to doing to much but by her taking care of some of it over the last week, I feel fresh and able to give her plenty of attention. I would suggest trying night feedings with a pump if possible.

I know it can be difficult turning some of the resposibility over to your husband or my wife for their care after seeing them so vulnerable but there are things they are able to do that can make a big difference. Hopefully this doesn't sound too selfish but there you are not only doing the job of being his caregiver but you also have to deal with all the emotional issues of your husbands illness. Good luck to you and your husband.


Tom-CG to wife, Pam 46@dx
Stage IV Tongue Cancer T2N2C
Dx 6/08, Surgery 7/08, 3 nodes positive
9/08 33IMRT/7Carbo/Taxol
4/09 node biopsy positive, mets to lungs/stomach
5/09 Cisplatin or Cis/Alimta study
6/09 Cis/Taxotere
9/09 Taxotere
1/10 Xeloda
3/10 Cetuximab weekly
6/29/10 lost battle
TomT #81952 10-12-2008 03:43 PM
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Ija- You are definately not alone with how you are feeling. My husband is very self reliant but I'm constantly reminding him to take his meds, flush his PEG, etc. etc. I'm sure the emotional stress is getting to you also. During stressful times your immune system takes a beating. You should get a physical and make sure you're ok and that there is not an underlying issue ie thyroid trouble. I just had mine checked because I've been unable to lose the ten pounds I put on since this hell started over a year ago. Ditto to what the others have said about taking time for yourself. During my husband's chemo treatments I would take a slow walk to the cafeteria and sometimes buy a trashy magazine to read just to take my mind away for awhile. He will be starting chemo again tomorrow so I will have to start my routine back up again! Take care of yourself.

Sue


cg to husband, 48 Stage 1V head and neck SCC. First surgery 9/07. Radiation and several rounds of chemo followed. Mets to chest and lungs. "Life isn't about waiting for the storm to pass, it's about learning to dance in the rain." Went home to God on February 22, 2009.
suemarie #81986 10-13-2008 06:41 AM
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ija,

Your doing great but you must continue doing great. Without my wife I would be dead today. No ifs, ands or buts about it. And I didn't appreciate her pestering me UNTIL it was over and I realized how valuable that was. I was not a model patient!!


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.
davidcpa #82038 10-14-2008 08:55 AM
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ija,

It's a lot of work and I don't have a PEG. Just keep up the good work. Your hubby is not complaining because he knows it has to get done...He appreciates it.

I ordered a staff but I'm still waiting for the insurance approval.


7-16-08 age 37@Dx, T3N0M0 SCC 4.778cm tumor, left side of oral tongue, non smoker, casual drinker, I am the 4th in my family to have H&N cancer
8-13-08 left neck dissection and 40% of tongue removed, submandibular salivary gland & 14 nodes clean, no chemo, IMRTx35
11-4-08 Recovering & feeling better
davidcpa #82039 10-14-2008 10:15 AM
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MS T Offline OP
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Hi Everyone,

Thank you all for the uplifting words and support.
I feel I made it sound like Hubby is a lump on a log here. He's not. This is definitly a team effort and Hubby helps a lot with his care and the house work too. He sleeps in the other room hoping that his up and down routine thru the night won't disturb me. ~grin~ I'm on hyper listen mode and alltho I don't get up when I hear him (it's hard not to! I listen carefully to make sure he's ok) I'm fully aware of when he's up and when he's sleeping. It's all I can do to stay in bed and not check on him. But if I did then he'd feel bad that he woke me.
I do take time for me. But even tho it is a nice change it's still time spent and there is so little time during day light hours to get things done. I don't wander far when he's in chemo. He dosen't tolerate the Chemo well and I don't want to be far if/when he does react so I can be there for him. Seeing my face helps him to know it's gonna be ok. On the brighter side!!! Only two more chemos to go!! WooooHoooo...
We talk a lot about what we're going to do when he's better. We've made plans and are trying to save so we can take a recoupe vacation after all his treatment is done.
And we laugh a lot! there's always a lite side to things. Just yesterday on the way home from treatment he had a cup of ice water with no lid that he was trying to sip and the road was bumpy. He decided to dump the water out of the window. ~ROFLOL~ well I think y'all know what happened? It came right back in his ear and all over the inside of the car. He looked at me with a real peeved look and I just started laughing, he couldn't help but join in, it was such a "Blonde" thing to do!
I knew this would be hard and prepard as much as I could for it. I take my vitamins, take power walks around the hospital during radiation and I always fit my nail day in twice a month. You guys out there really should try a pedicure!! They're great.
Even with all this and preparing mentally as best I could I just didn't expect the mind numbing fatigue. I just wanted to put that out there. I hadn't seen any other CG's express this and wanted them to know if they were feeling the same as me they wern't alone.
Thank you for all your kind words and I've decided I'm gonna fit in a "hair day" this month too! A woman always feels much better after getting her hair done.

~Ija~


Ija wife-husband 47y healthy nonsmoker,nvr chewed.Dx SCC 01/05 primary left anterior toungue w/2 surgeries 02/05 no rad/chemo recurrence 12/07 no rad/chemo. 07/08/08 modified lt radical neck disection 3 nodes removed 2 pos SCC. TX 090808 taxol & carboplatinx7 radx37 w/ethyol.
MS T #82042 10-14-2008 01:07 PM
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Hi lja,
I haven't posted in a month or so - I had to send my laptop back to get the keyboard replaced so now I'm catching up a bit here. I've been the caregiver for my husband the last four months.

Your fatigue is perfectly understandable. I have also felt overwhelmed at times, some more so than others. You are doing the right things by 'treating' yourself. One thing I found really valuable when David was going through the worst of treatment was to go and exercise very hard early in the morning before he would be waking up. I found it very theraputic and I always would envision myself getting stronger in doing it in order to face whatever came up that day. Also, if you have access to a caregiver support group that can be a place to let your hair down, so to speak, with real live people (not that we aren't real and live here, lol) who are going through a similar situation.

I'm not sure we can ever fully prepare ourselves for what is to come with this disease. Even though the doctors tried to tell us it would be hard, we really had no idea the toll it would take on both of us.

Hang in there,
Kendall


Wife and caregiver to David, diagnosed with squamous cell cancer/Stage 4 5/08. Primary on left tonsil stub, spread to left neck lymph nodes. 38 IMRT/3 cisplatin completed on 7/31/08.
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