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#197350 - 10/09/18 03:39 AM Re: more of this crazy path! [Re: ConnieT]  
Joined: Jun 2013
Posts: 241
KristenS Offline
Gold Member (200+ posts)
KristenS  Offline
Gold Member (200+ posts)

Joined: Jun 2013
Posts: 241
alabama
Wow. So glad you got him in! I hope he gets sorted out soon and it's a minor fix, not a major issue. And that he gets some rest and YOU get some rest too.


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
#197371 - 10/10/18 11:55 PM Re: more of this crazy path! [Re: ConnieT]  
Joined: Aug 2018
Posts: 124
ConnieT Offline
Senior Member (100+ posts)
ConnieT  Offline
Senior Member (100+ posts)

Joined: Aug 2018
Posts: 124
2 full days in the hospital now and no word from him. He does this all the time...ignoring all texts. It's a 2 hour drive round trip to go see him and it would be nice to know something. Family is getting pretty irritated with the lack of communication.

My oldest is going to stop and see him tomorrow while near the hospital. I sent 2 new shirts for him to change into so he can at least feel human.

I'm guessing he was a lot sicker than just dehydrated but wondering if they did a brain scan or decided it wasn't necessary.

The good thing is, I'm getting some rest because I know he is safe and being taken care of thank goodness as he wasn't willing to take care of himself by trying to beat the system.

I called the HR person about disability as he won't be going back to work in 9 days but no response to either call. Not sure if they are allowed to talk to the spouse so I called and let her know that he can't talk to her as he has no voice to speak. Hopefully hear back tomorrow.


Spouse of 56 yr old with BOT cancer
Stage 4a HPV16
3 chemo treatments cisplantin
35 radiation treatments
husband was former smoker/chewed tobacco for 38 yrs.
#197381 - 10/11/18 08:41 PM Re: more of this crazy path! [Re: ConnieT]  
Joined: Aug 2018
Posts: 124
ConnieT Offline
Senior Member (100+ posts)
ConnieT  Offline
Senior Member (100+ posts)

Joined: Aug 2018
Posts: 124
released after 3 days. no brain scans just nutrition. He had a sign on his door about a falling risk. When we got home, he almost fell after getting out of the car. He caught himself but i would like to know why this is happening. I am to call tomorrow to find out how to get into the portal set up on him through the hospital and cancer center so I can see more information.

my son says someone needs to make him do the feeding tube and I said, you can't make a person do something they don't want to do. It's up to him to get over his controlling/prideful nature and do this the right way.

I am going to follow up on extending the disability. He won't be back to work Oct 19th.

Meanwhile, my amazing friends are taking care of me and I have gotten long hours of sleep the past few days. My blood sugar is coming down and blood pressure better. I'm a bit of a health nut but this stress has taken a toll on my body.


Spouse of 56 yr old with BOT cancer
Stage 4a HPV16
3 chemo treatments cisplantin
35 radiation treatments
husband was former smoker/chewed tobacco for 38 yrs.
#197382 - 10/11/18 09:23 PM Re: more of this crazy path! [Re: ConnieT]  
Joined: Jun 2013
Posts: 241
KristenS Offline
Gold Member (200+ posts)
KristenS  Offline
Gold Member (200+ posts)

Joined: Jun 2013
Posts: 241
alabama
Falling Risk could also just be because of weakness due to poor nutrition, for what that's worth.

((hugs))

I forget where you guys are located ... but is it possible the weather is a factor? We're down in Alabama (the upper part), and even though we haven't had a drop of rain yet, that darn hurricane is frying my brain with migraines. I'd forgotten how BAD this season can get. And since this is all head/neck treatment ... it might be more susceptible to the barometric pressure stuff. Long shot, but you never know. It's my worst trigger.


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
#197385 - 10/12/18 02:22 AM Re: more of this crazy path! [Re: ConnieT]  
Joined: Aug 2018
Posts: 124
ConnieT Offline
Senior Member (100+ posts)
ConnieT  Offline
Senior Member (100+ posts)

Joined: Aug 2018
Posts: 124
I figure it probably is because of lack of nutrition. Not everyone had that sign on their doors...his was the only one i saw.

I'm in Iowa. Our worst weather is the fact it dropp3e to 40 degrees today! shock to the system really.

I did help him fill the syringes tonight for his feeding tube. I guess I will have to do that to make sure he follows through. His coloring looked bad again tonight. I'm going to pay more attention to that "gray" look from here on out.


Spouse of 56 yr old with BOT cancer
Stage 4a HPV16
3 chemo treatments cisplantin
35 radiation treatments
husband was former smoker/chewed tobacco for 38 yrs.
#197387 - 10/12/18 01:05 PM Re: more of this crazy path! [Re: ConnieT]  
Joined: Jun 2007
Posts: 10,155
ChristineB Offline
Administrator, Director of Patient Support Services
ChristineB  Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 10,155
PA
Im glad your husband is well enough to be home again! The fall risk is something nurses put up if patients are even the tiniest bit unsteady. Its all about covering their butt!!! If patients are wobbly even a little bit they want to make sure the patient wont get up without assistance and end up falling. Last time I was in the hospital for pneumonia I had the fall risk on my door. The nurses took it one step further with putting a bed alarm on my bed that went off if I tried getting up by myself. The bed alarm was such a nuisance!!! It was overly touchy and would go off in the middle of the night if I moved the wrong way. The nurses refused to remove the bed alarm unless I signed a waiver saying if I got hurt it was my own fault. The biggest problem with the bed alarm was the nurses were extra short staffed and couldn't respond in a timely manner if I called them to help me go to the bathroom. After I began to feel better a few days later, I noticed almost all patients had the bed alarms as they would go off at all hours of the day and night.

The issue with being off balance could be related to swelling from the rads. Ask the doc about if it has any relation to the treatments. If so then it may be several weeks before this improves. Being a week post rads theres only 1 or 2 more weeks to go before your husband begins to feel a little better. Im hoping that since his intake situation has gotten corrected that will help him to feel better quicker than most other OC patients.

Your husbands coloring could be related to his blood counts being way off. Ive noticed many cancer patients have an odd color when going thru treatments. If its tied to his bloodwork numbers then it may take a while for his color to return back to normal. My case is very different than most here, my blood counts took years to return back to normal levels... especially the red and white counts. Red blood cells are what carries oxygen thru the body. White cells are what fights infections. Pay attention to both but the white is what makes patients more susceptible to picking up all kinds of bugs that most normally would not. Patients may need nupeogen (sp?) shots to help boost their white counts back to the normal range. It can take months for the white to bounce back. This is an example of why its so important for OC patients top get a full blood count including testosterone and thyroid levels before starting treatment so the doc can see what the "normal" numbers for their patient are. Your husband will probably have bloodwork done at his first post rads check up. Pay attention to the white and red counts also look to see if testosterone and thyroid levels have been checked. If not ask the doc about why not as almost every single radiation treated OC patient ends up needing thyroid and testosterone levels monitored and require daily medicine.


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
#197392 - 10/14/18 02:10 AM Re: more of this crazy path! [Re: ConnieT]  
Joined: Aug 2018
Posts: 124
ConnieT Offline
Senior Member (100+ posts)
ConnieT  Offline
Senior Member (100+ posts)

Joined: Aug 2018
Posts: 124
so i had to call the chemo docs on call because husband cannot keep food down even through feeding tube. he said it's like his GERD is acting up. they said to take the nausea meds. he did not want to but i watched him to make sure he did.

this is getting so frustrating. I'm making him do the feeding tube. they said to back off on that until his stomach settles down.

what were the 2 weeks after radiation like for you?


Spouse of 56 yr old with BOT cancer
Stage 4a HPV16
3 chemo treatments cisplantin
35 radiation treatments
husband was former smoker/chewed tobacco for 38 yrs.
#197393 - 10/14/18 03:36 AM Re: more of this crazy path! [Re: ConnieT]  
Joined: Apr 2018
Posts: 44
DeniseG Offline
Contributing Member (25+ posts)
DeniseG  Offline
Contributing Member (25+ posts)

Joined: Apr 2018
Posts: 44
Food, or mainly liquids and soups, tasted like crap and I wasn't interested in getting anything down. I knew that I had to get some nutrition so I ordered some high calorie Boost, someone on here had a link to an ebay page. I have problems with dairy so I tried Lactaid too because I couldn't find plant based drinks with enough calories. The Boost helped because it's a lot of calories in a small package. This was probably the worst time for me, the phlem was constant, throat still hurt, no energy. No feeding tube and no nausea though. Hope he feels better! You're doing a great job looking after him!


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
#197394 - 10/14/18 04:05 AM Re: more of this crazy path! [Re: ConnieT]  
Joined: Aug 2018
Posts: 124
ConnieT Offline
Senior Member (100+ posts)
ConnieT  Offline
Senior Member (100+ posts)

Joined: Aug 2018
Posts: 124
he won't try food anymore. after a week of starving himself and ending up in the hospital, at least he was willing to do the feeding tube but he is still struggling. He sleeps pretty much all the time, only gets up to go to the bathroom maybe once or twice a day. I need to check and see if the nausea pills helped. His stubborness is delaying his healing.

2nd call to the on call cancer center. they are calling in anti nausea meds as I got to looking and he doesn't even have any. He said those were for chemo. duh....i think they are for nausea dude. He had the option to drive an hour to the ER again for IV fluids or wait for meds in the morning. He wants to wait but he can't even lay down. They said he will need to come in Monday for an IV most likely as he will be dehydrated again. I wish they would just keep him in the hospital for the next week.

I'm going to bet I drive to the ER during the night or early tomorrow morning.

Last edited by ConnieT; 10/14/18 04:44 AM.

Spouse of 56 yr old with BOT cancer
Stage 4a HPV16
3 chemo treatments cisplantin
35 radiation treatments
husband was former smoker/chewed tobacco for 38 yrs.
#197396 - 10/14/18 01:03 PM Re: more of this crazy path! [Re: ConnieT]  
Joined: Jun 2007
Posts: 10,155
ChristineB Offline
Administrator, Director of Patient Support Services
ChristineB  Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 10,155
PA
When using the feeding tube, he shouldnt lay down right after doing a feeding. He should either sit up or be on a 45 degree incline for at least an hour after the feeding to help avoid the nausea or GERD feeling. Its common for patients doing tube feedings to feel bloated after doing a feeding. Sitting up or on an incline helps alleviate the bloated feeling too. When using a feeding pump to do feedings, its usually at a much slower rate than the gravity or push methods which make it easier to tolerate as well. Most common anti-nausea m eds are compazine and zofran. Most patients have needed to take the anti-nausea meds 24/7 around the clock for days at a time or we'd end up sick as a dog. Some meds have pretty bad side effects, especially iof taking them along with other meds. Im wondering if compazine is something your husband had been taking prior to his hospitalization as theres some pretty dramatic side effects for some patients. Take a look at the side effects compazine can cause...

Compazine side effects web search results

RX list, Compazine side effects

When I used compazine, I had even more problems than controlling my nausea. Compazine caused me to have restless leg syndrome where I was pacing and could NOT sit down or stop walking back and forth. Up until that point I never really believed there was such a thing as restless leg syndrome, until I went thru it and saw how awful it truly was. I ended up hospitalized at one point from the compazine. For me, zofran worked the best, even now I still take zofran when my stomach acts up.


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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