| Joined: Jun 2013 Posts: 346 Likes: 3 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: Jun 2013 Posts: 346 Likes: 3 | Definitely not laying down! I slept on the sofa at that point because I could use all the pillows in the house to prop up to a decent angle, (We don't have a recliner or I would've used that.) The bonus was, I got the TV, and the kids got to hang out with me late into the night, LOL. I had trouble tolerating nausea meds (gave up on those first week, and now have an allergy to one), and trouble tolerating the formula. It really messes with your head and makes you not want to eat. Hydration is more important right now. Yeah, it slows his healing, but at some point his stomach will settle and maybe there will be a food or supplement that will sit more lightly for him. Baby steps. There's no time frame to have to heal by. (That's for him, not for you...) It happens when it happens, and forcing it won't work ... giving up won't work either.
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
| | | | Joined: Aug 2018 Posts: 345 Likes: 8 Platinum Member (300+ posts) | OP Platinum Member (300+ posts) Joined: Aug 2018 Posts: 345 Likes: 8 | I told him not to lay down after eating. I think he was so tired, that's all he wanted to do. He couldn't even keep down water put in his feeding tube which concerned me. I picked up the nausea meds. He wanted the cake i brought home from church for him as he has craved cake. I said not until 30 minutes after some nausea meds so I'm bringing him cake, a little vanilla ice cream and milk. I offered to make it into a shake but i guess he wants to try the cake as is. Not the healthiest choice of food but I wll let him give it a try.
He was walking around today so I'm taking that as a positive. I told him to put on new clothes as he's worn the same shirt since Thursday. I bought him some new smaller sizes plus washed all this t shirts. He asked why....I said, you need to change clothes once in awhile just to feel cleaner. He's still wearing the same shirt hours later...oh well.
ETA. he drank a little milk but it was too painful to swallow ice cream and a bite of cake so I asked if I could make it into a shake and he liked that idea. He took 2 drinks but said it was better but still painful. I said I will add more heavy whipping cream next time to make it even smoother. I don't think he's taking pain meds too much and never really has except for that feeding tube.
Now to keep it down.......
Last edited by ConnieT; 10-14-2018 11:30 AM.
Spouse of 58 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. 1/2020 diagnosed with cancer near TMJ 4/2020 chemo 5 days every 2 weeks 6/2020 proton therapy 9/21/2020 cancer free
| | | | Joined: Sep 2014 Posts: 87 Likes: 2 Supporting Member (50+ posts) | Supporting Member (50+ posts) Joined: Sep 2014 Posts: 87 Likes: 2 | I'm so sorry that he's having so much trouble trying to eat. After rads, all I could stomach for awhile were varieties of high calorie milkshakes and green juices. I got sick of having any one particular thing, so I just had a giant pail of vanilla ice cream, milk, and flavoured my shakes with whatever I felt like at the time (so chocolate, coffee, peanut butter, cherries, blueberries, coconut cream, bananas, peppermint extract, green matcha, etc.)
If he's craving cake, you can probably make a milkshake similar to whatever flavor of cake he might be craving. I personally don't like icing, but maybe its all that whipped cream and candy sprinkles that he's after. You can add those to the blender.
Dx 2014Jan29 (42 yr old otherwise fit nonsmoker) SCC tongue stage III T3N0M0 subtotal glossectomy, partial neck dissection, RFFF, trach, NG tube 2014Feb25 16 days in hospital RAD 25 zaps 2014May5-2014Jun9 Back to work, paddling & hiking shortly afterwards
| | | | Joined: Aug 2018 Posts: 345 Likes: 8 Platinum Member (300+ posts) | OP Platinum Member (300+ posts) Joined: Aug 2018 Posts: 345 Likes: 8 | I did just throw a small bite of cake in with the milk shake stuff. He had a little issue with the consistency so I said I would add more cream next time. Today I made cheesy broccoli soup from scratch with lots of fat. I blended it to liquid consistency and he swallowed about a tablespoon. He said that wasn't too bad to get down. I told him another tablespoon tonight if that went down ok. He won't use any pain meds. We might actually get 6 boxes of formula in him today. I started with 1 box, 1.5 box, 1.5 box tonight will be 2 boxes at one time with water syringe between every formula syringe. I told him we are going to record how much water he takes in a day as he was not putting anything out in the bathroom. I said, it's this or the IV which he does not want to do.
He's finally letting me be in control and while he has called me a drill sargeant for making him be accountable for putting nothing in his body for a whole week...well, I will accept that title and wear the hat. I'm tired of him dinking around trying to beat the system, it was only hurting his recovery.
Spouse of 58 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. 1/2020 diagnosed with cancer near TMJ 4/2020 chemo 5 days every 2 weeks 6/2020 proton therapy 9/21/2020 cancer free
| | | | Joined: Aug 2018 Posts: 345 Likes: 8 Platinum Member (300+ posts) | OP Platinum Member (300+ posts) Joined: Aug 2018 Posts: 345 Likes: 8 | success! lots of water today and 6 boxes of formula...first time ever to get 6 in without most coming back up. he went to the bathroom 3-4 times so progress was made. I will say that he didn't sleep today until he took a long nap tonight while i was gone. Up to this point, he has slept most of the day and night unless he was throwing up.
tomorrow...more water. 6 boxes of formula and a tablespoon of broccoli soup. i will say he was more alert than I have seen him during the last few weeks, his color was good, no red rings around his eyes.
Spouse of 58 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. 1/2020 diagnosed with cancer near TMJ 4/2020 chemo 5 days every 2 weeks 6/2020 proton therapy 9/21/2020 cancer free
| | | | Joined: Jun 2013 Posts: 346 Likes: 3 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: Jun 2013 Posts: 346 Likes: 3 | Yay! Glad to hear there's some progress! Hope it goes well tomorrow 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
| | | | Joined: Aug 2018 Posts: 345 Likes: 8 Platinum Member (300+ posts) | OP Platinum Member (300+ posts) Joined: Aug 2018 Posts: 345 Likes: 8 | I have a question. is there an advantage to toughing it out and refusing pain meds?
I am up to 6 boxes now and I told him he will do 32 oz of water in that feeding tube. His output is so poor still. He grips about the water the most. He's dropped 8 more pounds.
He said he is not ready to swallow anything because of pain.
I did make him take a shower as he has worn the same shirt since I picked him up at the hospital last Thursday. I took all of his bed stuff and washed it too. I had him go outside and sit in the sun for 20 minutes and walk to the mailbox as his longest walk this week has been 10 steps to the bathroom. He just lays in bed the rest of the time. I figure it has to feel good to feel clean and have all of your bed stuff clean again. I worked on the psychological stuff today. His son took him for a ride while I was doing laundry.
He will not do the feeding tube unless I stand over him. I was gone for 6 hrs today and he did not do any water or feeding. I've become a full time nurse now as he refuses to take care of himself.
I will survive this....sorry my post is scattery....I feel scattery though today
Spouse of 58 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. 1/2020 diagnosed with cancer near TMJ 4/2020 chemo 5 days every 2 weeks 6/2020 proton therapy 9/21/2020 cancer free
| | | | Joined: Jun 2013 Posts: 346 Likes: 3 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: Jun 2013 Posts: 346 Likes: 3 | No advantage I can think of. The meds aren't THAT good, so unless there's a real fear of addiction being a problem, or side effects being a problem, the misery of the pain far outweighs any difficulty the meds can cause. And I'm not much a fan of meds (never mind what my bedside table looks like). If he's that resistant to them, he'll probably be good and stubborn about weaning off them properly, so there shouldn't be an issue. And not hurting all the time DOES help you heal, if you remember you're still actually hurt and take it slow while recovering. (Meds get you through the pain, they don't take away the problem ... like folks who medicate an injured knee or ankle and then keep playing a sport ... bad plan. But folks who medicate to get through it and actually rest will heal, and be less miserable in the process. That sort of thing.)
However, it IS his body, and cancer is the biggest scariest loss of control of one's body that I can think of, barring stuff like dementia and MS and other permanent disorders, so some folks want to have even that much control ... suffering the pain means at least they are in charge of that much. It could be how he's thinking, underneath, without even realizing it.
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
| | | | Joined: Aug 2018 Posts: 345 Likes: 8 Platinum Member (300+ posts) | OP Platinum Member (300+ posts) Joined: Aug 2018 Posts: 345 Likes: 8 | I think you are correct Kristen. It's something he has control over and control is very important to him. He won't take the pain meds as he is terrified of constipation. He said his pain is at a 2 out of 10. The worst it ever got was 3-4 out of 10. I will keep asking if he wants to try to swallow and it's his choice.
His mind is a little better than last week thank goodness. He still cannot comprehend or react to things quickly enough to drive. He conned his son into leaving him the truck keys. I quickly came home and grabbed those. He has been told not to drive for at least a month and he honestly is a danger to himself and others right now. Feel like I'm raising a teenager these days which is better than last week when I called him a belligerent 2 yr old! We are making progress and he looks so much healthier than he had.
He just said that something has changed. I said something defines nothing. He said he would put it into words in the morning???? I have no idea what this entails. I assume nothing good.
Last edited by ConnieT; 10-16-2018 07:40 PM.
Spouse of 58 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. 1/2020 diagnosed with cancer near TMJ 4/2020 chemo 5 days every 2 weeks 6/2020 proton therapy 9/21/2020 cancer free
| | | | Joined: Apr 2018 Posts: 51 Supporting Member (50+ posts) | Supporting Member (50+ posts) Joined: Apr 2018 Posts: 51 | If he would try the lquid lidocaine or magic mouthwash might help with swallowing.
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 | | |
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