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advice needed! #197462
10-21-2018 12:56 PM
10-21-2018 12:56 PM
Joined: Aug 2018
Posts: 169
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ConnieT Online OP
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ConnieT  Online OP
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Joined: Aug 2018
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just called the on call Oncology department. Husband had called them earlier wondering why he is not well. I told them how this is really going so they know the whole story.

I left 7 boxes and 32 oz of water for him to administer himself on Friday as I was out of town working the whole day. Left him alone yesterday as he seemed to be sleeping quite a bit.

I go in today because a friend wanted to pick him up and take him for a drive. He has not consumed anything but maybe a little water since Friday. He asked why I wasn't feeding him anymore. He is well enough to do those syringes as he did do it on Friday. He didn't clean them so thank goodness I got a box of new ones. He took a shower and finally took off the clothes he has worn since sometime last week. Then he fell in the shower. Oh boy. Did I ever say nursing was at the bottom of my list of career choices??!!

I told him today that pride was going to kill him before cancer does.

Do I just suck it up and fight with him day in and day out to do those syringes? Am I helping him by having to continue to spoon feed him those syringes? At what point were you able to feeding yourself?

I'm gone all day tomorrow in classes an hour away.

I've had to swallow my pride through this whole thing to take care of someone I have little relationship with for good reason. But my patience is really wearing thin watching him take 2 steps forward and 1 step back repeatedly because of refusal to accept that you cannot take a short cut to the front of the line on this one.


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: advice needed! [Re: ConnieT] #197463
10-21-2018 01:06 PM
10-21-2018 01:06 PM
Joined: Jun 2013
Posts: 270
alabama
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KristenS Offline
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KristenS  Offline
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Posts: 270
alabama
It's going to be ages for him, at this rate. And no, it doesn't have to be you who guides him. This sounds like a case for a professional nurse who visits daily. There must be some for hire (even at ridiculous rates, perhaps?).

It was months before I could be safely rid of the tube, and my healing mostly went well after the treatment was done. (I had glitches, but they were more surgical issues at that point, or came up much much later.) My treatments ended in March, and I think my signature reminds me the tube came out in June of that year. My whole family worked with me to manage it. I'm not a big eater anyway, which may have helped (my 'normal' isn't super normal, LOL) but I really did need the support to be able to actually eat.

As for syringes, that has baffled me all along. I never had anything like that with my tube. Just a drip bag like for an IV, and I'd have to let gravity do its thing. Could be odd when out in public, but no squirting or forcing more than gravity (which was quite enough, sigh). Is it perhaps going in too fast and upsetting his tummy somehow? But I know they change things quickly in the cancer field, so maybe this is a regional thing, or maybe a new thing.



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: advice needed! [Re: ConnieT] #197464
10-21-2018 01:18 PM
10-21-2018 01:18 PM
Joined: Aug 2018
Posts: 169
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ConnieT Online OP
Senior Member (100+ posts)
ConnieT  Online OP
Senior Member (100+ posts)
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Joined: Aug 2018
Posts: 169
the oncologist nutritionist told him to use the drip. the hospital told him they don't do drip and told him not to so he won't do it. the hospital and oncologist are of the same hospital system.

He just keeps asking how to get well but won't listen to anyone because he thinks he can do it his way and beat the system. It is how he is made up unfortunately and refuses to change even though he is messing around with his own life now.

thank you Kristen..I just need to know what's normal as this is my first experience of dealing with cancer/feeding tubes.

A friend took him for a long drive...such a break for me! I gave him 2.5 more boxes of food but because I have more syringes to fill at one time, he argued that I'm going to make him throw up. Heavens. Same amount as always but extra syringes messed up his thinking. I'm resigned to doing this as he can't seem to function on his own. I'm gone all day tomorrow though.

Last edited by ConnieT; 10-21-2018 04:11 PM.

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: advice needed! [Re: ConnieT] #197466
10-22-2018 05:01 AM
10-22-2018 05:01 AM
Joined: Oct 2012
Posts: 1,044
Toronto, Canada
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gmcraft Offline

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gmcraft  Offline

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Toronto, Canada
My husband used syringes all through. We were never told to use the drip. In a way, that’s more convenient when we had to go somewhere. We would just find a private area and John would get his feeding.

I would also just like to say that if your husband doesn’t have enough nutrition, he may end up with the risk of falling due to hypotension. Falls can be dangerous as they may break a bon or get a fracture. It happened to John (he had postural hypotension as a result of all the treatments though he had his feeds regularly), and the fainting spells would happen in the ost inconvenient places like a parking lot. When he was down, I just couldn't get him up again. I had to look up YouTube to learn how to help someone who’s fallen to get up safely.


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.
Re: advice needed! [Re: ConnieT] #197474
10-22-2018 02:14 PM
10-22-2018 02:14 PM
Joined: Aug 2018
Posts: 169
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ConnieT Online OP
Senior Member (100+ posts)
ConnieT  Online OP
Senior Member (100+ posts)
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Joined: Aug 2018
Posts: 169
He fell in he shower yesterday. I had to help him up. He could not get up on his own. They put falling risk on his door when he is hospitalized.

The oncology nurse called him today. She once again gave him him the low down and told him he will not feel back to normal for at least a year and there is no short cut. I was so glad she called me as well to discuss his stubbornness to use a feeding tube. I also got to tell her how noticeable his lack of comprehension is even after 1 day of lack of nutrition and she said that it's not my imagination.

Now we will see when I get home how many boxes of formula he used and how much water. He told the nurse he had done 5 boxes and 10 syringes by noon. I hope that's true.

Thanks for the info from all. I find when I talk to the nurses, they tell me little that is new. I tell them I have "experts (survivors)" educating me on how this should go!

ETA. came home after being gone 14 hrs in classes, 4 boxes done and maybe 16 oz of fluid. i filled 5 syringes and left the room. This is ridiculous. He told the nurse he had done 5 boxes by noon. no he did 4. he said 10 syringes of water. maybe 8. at least he did some. he said he almost threw up last night so he can't be doing all this formula. i said skip the formula tonight but do more in the mornings when you don't have so much nausea. I don't want a full belly at night either. But get that water in tonight. I notice he goes to the bathroom once a day most days. He's going to end up in long term care at this rate and use up his insurance for the rest of his life so other people can save his life.

Last edited by ConnieT; 10-22-2018 05:57 PM.

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: advice needed! [Re: ConnieT] #197486
10-24-2018 05:51 PM
10-24-2018 05:51 PM
Joined: Apr 2018
Posts: 48
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DeniseG Offline
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DeniseG  Offline
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Joined: Apr 2018
Posts: 48
Perhaps he does need to be in rehab because he is not capable of taking care of himself and you can't be there always to make sure he is feeding and hydrating. Perhaps he needs some counseling too.


Diagnosed 11/17 SCC right side of tongue
Surgery 2/18 Partial Glossectomy
Radiation 3/18 - 5/18
Clear PET scan 10/18
Non smoker, occasional alcohol use
Re: advice needed! [Re: ConnieT] #197487
10-24-2018 06:51 PM
10-24-2018 06:51 PM
Joined: Aug 2018
Posts: 169
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ConnieT Online OP
Senior Member (100+ posts)
ConnieT  Online OP
Senior Member (100+ posts)
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Joined: Aug 2018
Posts: 169
I had a mini meltdown yesterday about all this. wondering how much i should be responsible for his care as he doesn't seem to want to get well. I talked with the oldest son as the two younger ones want nothing to do with all this. He said he was struggling too. he said you can't make someone want to get better. But we also do not know how much he is comprehending or if he is just being his old difficult self. Hard to say.

He did 8 oz of water the whole day while i was gone. He did do 5 boxes of formula. I stood over him as he wasn't doing any more water on his own tonight and gave him 16 more oz of water. I told him that tomorrow...he will do at least 32 oz of water before 5 pm. I will be around more so I'm going to be on him to get this done. I told him if he waits until late at night to get water in, he will be up during the night needing to go to the bathroom.

I'm giving him until Friday to get this together and if he does not, I'm calling the cancer center again and telling them how it really is since he deceived them the other day. I want them to hospitalize him so that he is accountable 24/7 to a nurse he would be afraid to stand up to. He has free counseling but he calls counseling psychobabble and just has lied in the past...it was a waste of everyone's time. As I've said before, pride is going to kill him before the cancer does.

thanks for listening. this has been the hardest week for me during this whole procedure. I"m used up. I did go to the doctor for myself today as I have to do self-care. The stress has really taken a toll on my adrenal glands. Doctor said with all the crazy (there's so much more than this going on in my life), I'm really in pretty good shape. I told her I have wonderful support people keeping me going. Some are on here, some in real life. I am blessed.


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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