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never sure what to believe or think #197698
12-14-2018 06:10 PM
12-14-2018 06:10 PM
Joined: Aug 2018
Posts: 222
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ConnieT Offline OP
Gold Member (200+ posts)
ConnieT  Offline OP
Gold Member (200+ posts)
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Joined: Aug 2018
Posts: 222
grad school daughter lives at home. she came to me today to say her dad is milking this sickness which she predicted would happen from day 1. She said he could be doing something besides laying in that bed 24/7. It's good to hear another perspective as I don't know what is real and what isn't and I've elluded to that before.

In my head, I'm giving him until we hear that PET scan diagnosis on Thursday to milk it and be helpless. I do not know what the results will be, it could be good news, it could be bad news. I'm about ready to ask his boss to give him some kind of work project. I agree with daughter that he can't get any better just sleeping most of the time and his only exercise is to walk 10 steps to the bathroom.

Any thoughts, experiences on knowing what is real and what is just feeling sorry for oneself. I truly do not know how to interpret what I see day to day.


Spouse of 56 yr old with BOT cancer
Stage 4a HPV16 positive
3 chemo treatments cisplantin
35 radiation treatments 7000 cGy
former smoker/chewed tobacco for 38 yrs.
Re: never sure what to believe or think [Re: ConnieT] #197699
12-14-2018 08:57 PM
12-14-2018 08:57 PM
Joined: Jun 2013
Posts: 318
alabama
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KristenS Offline
Platinum Member (300+ posts)
KristenS  Offline
Platinum Member (300+ posts)
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Joined: Jun 2013
Posts: 318
alabama
At this stage it can be really hard to tell, for anyone. The illness makes you feel like you can barely get out of bed. Depression makes you feel that way too. Add them together and ... you don't want to get out of bed. Add to that a person who prefers to have people cater to his needs, and is maybe facing the first really big scare of his whole life ... that's a lot to untangle. That scan could come back perfectly clear (which would be great!) and he'd still be a sick man. How much he did to himself is moot at this point (from a health perspective, not a mental one). He has to heal, and it will take longer now. But (as you and your daughter know) he's got to do a lot of it himself. Just like you can't lift weights to build someone else's muscles for them, you can't do his swallow exercises either. Nor can you eat the calories, etc.

This is a totally long-shot idea, but since so much of what you describe of his issues is mental ... is it even possible to have him temporarily committed for his own safety? Preferably at the same hospital that deals with his cancer treatments? It might be a good wake-up call. Not the sort of thing I'd normally suggest, but if they can help him get a grip on his depression, and his new health reality, in a setting that can handle his physical needs better than you can ... it might be the eye-opener that he needs. They can do things like that for 24 or 48 hours. (We had a relative who made some very concerning statements once, and he lived out of state, so we had to call for a welfare check. It wasn't pleasant for anyone, but it was a bit of a wake-up for him to at least think about his intentions and his statements ... it hasn't happened again, thankfully.)

I know it's a weird idea, but it may be time for out of the box thinking?


Surgery 5/31/13
Tongue lesion, right side
SCC, HPV+, poorly differentiated
T1N0 based on biopsy and scan
Selective neck dissection 8/27/13, clear nodes
12/2/13 follow-up with concerns
12/3/13 biopsy, surgery, cancer returned
1/8/14 Port installed
PEG installed
Chemo and rads
2/14/14 halfway through carboplatin/taxotere and rads
March '14, Tx done, port out w/ complications, PEG out in June
2017: probable trigeminal neuralgia
Fall 2017: HBOT
Jan 18: oral surgery
Re: never sure what to believe or think [Re: KristenS] #197700
12-15-2018 05:32 PM
12-15-2018 05:32 PM
Joined: Aug 2018
Posts: 222
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ConnieT Offline OP
Gold Member (200+ posts)
ConnieT  Offline OP
Gold Member (200+ posts)
C

Joined: Aug 2018
Posts: 222
my daughter said he needs to go live in long term care for awhile. He's making no progress except to get out of bed once in awhile. . I would say his intellect and personality seem back to normal for the most part...that was questionable at one time. I don't know about depression. He seems the same today as he was 25 yrs ago when he started taking depression meds. This is probably the first time in his life that he can't control much of anything. Kristen, you are correct in all you say.

I will try to be patient until Thursday appts and see what the doctors say. I am used up from this whole thing and of course, no appreciation whatsoever.

thanks for your input. I am just shaking my head not knowing what to think. He is doing 6 boxes of formula a day and some water. I assume he's swallowing applesauce.


Spouse of 56 yr old with BOT cancer
Stage 4a HPV16 positive
3 chemo treatments cisplantin
35 radiation treatments 7000 cGy
former smoker/chewed tobacco for 38 yrs.

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