Previous Thread
Next Thread
Print Thread
curious about your diet after treatment #197821
01-22-2019 06:08 PM
01-22-2019 06:08 PM
Joined: Aug 2018
Posts: 257
C
ConnieT Offline OP
Gold Member (200+ posts)
ConnieT  Offline OP
Gold Member (200+ posts)
C

Joined: Aug 2018
Posts: 257
husband is now eating anything he wants. chips, pre packaged frozen meals, fast food. This is how he ate before cancer. I quit cooking a few years ago because I would fix a healthy nice dinner and he would be in the fridge minutes later saying it wasn't emotionally satisfying! What??

I thought he might make healthier choices now. Guess not. He doesn't even want to take the B6 or B12 supplements to help with his numb feet and hands so that was wishful thinking on my part. I noticed all the healthy food got put in a box (applesauce, tubes of baby food, soups, etc) and the chip bags came home!

Did you make changes to your food choices after cancer or just carry on and eat as before? I'm just curious of the thought process for others. I made changes a few years ago and got rid of my diabetes plus some significant weight but I grew up with a health nut dad so I went back to how I ate growing up rather than the junk diet my husband helped us gravitate toward. He lost 60 lbs during treatment but has been putting it back on pretty quickly so I guess the weight loss was just temporary for him. I would say at 3 months out from treatment, his life and habits look like they did before cancer. I doubt anyone would know he had cancer if they hadn't been told.


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: curious about your diet after treatment [Re: ConnieT] #197822
01-22-2019 07:43 PM
01-22-2019 07:43 PM
Joined: Jun 2013
Posts: 345
alabama
K
KristenS Offline
Platinum Member (300+ posts)
KristenS  Offline
Platinum Member (300+ posts)
K

Joined: Jun 2013
Posts: 345
alabama
Well, my taste changed a lot, so my food choices did too ... but that doesn't seem to be an issue for him. Also, still had trouble with pain and chewing. But yeah, I was totally ready for a bag of chips as soon as my mouth would let me ... ahh ... so satisfying because the taste was still just right.

This could be his way of trying to pretend it never happened (regain control again, an anxiety habit), or just plain not being real bright about what his body needs. No telling. But if he can handle it, that's his issue now, I guess. Unless he has digestion issues ... being tube-dependent did a number on my digestion for awhile, but that may not be true for him. Something to keep an eye on, though.

Let him try and see how it goes. (Since there's not much you can do to stop him anyway.) And lots of hugs.


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: curious about your diet after treatment [Re: KristenS] #197823
01-23-2019 07:23 AM
01-23-2019 07:23 AM
Joined: Aug 2018
Posts: 257
C
ConnieT Offline OP
Gold Member (200+ posts)
ConnieT  Offline OP
Gold Member (200+ posts)
C

Joined: Aug 2018
Posts: 257
I love your brutal honesty KristenS!! The thing is, you are right on target!

I guess I hoped he would connect what he put in his body (tobacco,alcohol, food, etc) to some of his health issues but he does not, in fact, even when the doctors tell him to take supplements or get out of that bed, he rebukes their advice. He still wants to hurt the doctor who told him to stop acting like a 2 yr old and asked what was keeping him from using a feeding tube and why was he starving himself because numbers don't lie. I told him to get over it, I guess the truth hurts.

He seems to have retained a nearly perfect return to how foods tasted before. I remind him how fortunate he is.

He does have a core philosophy that the rules don't apply to him so I see he's going to test that again with a return to many of his past behaviors, not just food. I will continue to improve my health by making better choices as I just know better and have seen better.

Thanks for sharing, I was just curious if it changed how others thought of what they ate or not.

ETA: he has not gone back to tobacco yet as far as I know, I scared him to death about all the alcohol by telling him I read that a doctor was quoted as saying that patients that went back to tobacco and alcohol never returned for his study because they didn't survive. wanted to clarify those aren't his bad behaviors.

Last edited by ConnieT; 01-23-2019 07:33 AM.

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: curious about your diet after treatment [Re: ConnieT] #197824
01-23-2019 08:53 AM
01-23-2019 08:53 AM
Joined: Jun 2013
Posts: 345
alabama
K
KristenS Offline
Platinum Member (300+ posts)
KristenS  Offline
Platinum Member (300+ posts)
K

Joined: Jun 2013
Posts: 345
alabama
Well, for a while it did change how I thought about what I ate ... once I was well enough I did go through a period of trying to eat a lot healthier. Was starting to enjoy it too ... some foods I'd never liked before. Then the allergies kicked in. Just can't win sometimes. LOL. (Seriously, who gets a spinach allergy?) But ... I'd had food issues for YEARS before the cancer, due to severe nausea due to panic attacks, so my rule of thumb had been, if it stays down, it counts as a good food. It was the only way I could survive for a long time. I'm not exactly a stellar role model on this question. I still praise God that nausea was not one of my issues during chemo, because everything makes me nauseated... don't know how I missed out on that one.

Now that I'm still dealing with the trauma from the denture surgery, I'm back to, if I can mush it down, it's good. If it stays down, it's better. So ... still not a stellar role model. smile But my doctor and I try to keep an eye on the basics ... I require B12 shots and other stuff, so we watch closely. My husband keeps a good eye on me 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
Re: curious about your diet after treatment [Re: ConnieT] #197825
01-23-2019 10:05 AM
01-23-2019 10:05 AM
Joined: Jul 2012
Posts: 3,247
NYC
P
PaulB Offline
Patient Advocate (old timer, 2000 posts)
PaulB  Offline
Patient Advocate (old timer, 2000 posts)
P

Joined: Jul 2012
Posts: 3,247
NYC
Hi ConnieT,

My diet has gotten worse since cancer due to difficulty eating. Before that, I was was able to eat all, and when I wanted, watched what I ate. I did get tired of eating somewhat healthy foods since I was 15, and exercised often prior to cancer. Now, I eat what I can, which is soft foods as they removed all my teeth, besides the dysphagia. Each year I was going to see about teeth a heath crisis occurred, like a heart attack.

When I feel good, I just got over a few hospitalizations, and a stay in the nursing home, I eat better. Right now, I mostly order out. The nursing home did purée my food, which I liked, and was able to eat all! I may call a food program, I had it before, of prepared foods. I think i’ll see about their puréed program if that’s better.

It does take time and effort to eat healthy foods. When you’re sick, that thought goes out the door, and eating to survive prevails, especially if they never ate healthy. Luckily, and sometimes that does me no good, I did all kinds of diets, have all the cooking gadgets too, and was an avid cook, but my energy and desire says, no. Right now, I’m just doing breakfasts like a fried or hard boiled egg.

I wish your husband can see your concern, and that of others. We are in everyone’s corner including his battle. It does take up to two years to somewhat recover. I’m 10 years out from multiple treatments, and it’s still struggle with permanent side effects.

I do have several digital books, some for free on the internet, on easy to eat foods, and recipes for people like us.

Good luck and best wishes!


10/09 T1N2bM0 Tonsil
11/09 Taxo Cisp 5-FU, 6 Months Hosp
01/11 35 IMRT 70Gy 7 Wks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Remove IORT 10Gy PNI
12/13 25 Protons 50Gy 6 Wks Carbo
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fib Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent
02/19 Finally Cancer Free Took 10 yrs






Re: curious about your diet after treatment [Re: ConnieT] #197826
01-23-2019 01:04 PM
01-23-2019 01:04 PM
Joined: Jun 2007
Posts: 10,398
PA
C
ChristineB Offline
Administrator, Director of Patient Support Services
ChristineB  Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)
C

Joined: Jun 2007
Posts: 10,398
PA
Connie, an OC patient/survivor returning to their pre-cancer diet at only a short time after finishing rads is unheard of. Your husband has no idea how lucky he is!!! First having a dedicated caregiver is a gigantic help to patients. Going thru rads with barely any side or after effects is rare, maybe only one in ten get thru it as easy as your husband has. I wish he could see his situation from another OC patients/survivors viewpoint. Not everyone sails right thru everything and then is able to eat whatever they want. I didn’t have a caregiver and the last real meal I’ve eaten was almost 12 years ago. After my very first oral cancer, my life and ability to eat never went back to my pre-cancer days.

Your husband truly is one heck of a lucky man!!!


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
Re: curious about your diet after treatment [Re: ChristineB] #197827
01-23-2019 08:27 PM
01-23-2019 08:27 PM
Joined: Aug 2018
Posts: 257
C
ConnieT Offline OP
Gold Member (200+ posts)
ConnieT  Offline OP
Gold Member (200+ posts)
C

Joined: Aug 2018
Posts: 257
thanks for all the responses!

He has NO idea how fortunate he is on many aspects so I often remind him of what others deal with and go through. He did say he can't eat spicy foods yet as they hurt his mouth. He tasted some pulled pork I bought tonight and complained about not having any of the bbq sauce on his bite. He had just told me he was afraid of bbq burning his mouth! I can't win!

He started therapy with a speech pathologist yesterday as he can barely open his mouth which has been an issue the whole time. I had never noticed a 6'3" man was not able to open his mouth much I guess. I don't even think it's worse than before treatment but they are working on getting him to open up more. He also did some stuff to keep from getting a stiff neck permanently as one of his co-workers did after a similar cancer. While he struggled for months on end with that feeding tube, compliance and all the rest, he is getting back to pre-cancer pretty quickly these days and hopefully, he will not have too many residual side effects. We will have to wait and see I suppose.

Thanks again for all the insight and experiences. I can continue to remind him how fortunate he is as he cannot appreciate it enough!


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: curious about your diet after treatment [Re: ConnieT] #197877
02-17-2019 12:17 PM
02-17-2019 12:17 PM
Joined: Jun 2013
Posts: 345
alabama
K
KristenS Offline
Platinum Member (300+ posts)
KristenS  Offline
Platinum Member (300+ posts)
K

Joined: Jun 2013
Posts: 345
alabama
Just checking in ... how are you doing? Holding up okay?


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: curious about your diet after treatment [Re: KristenS] #197879
02-17-2019 09:49 PM
02-17-2019 09:49 PM
Joined: Aug 2018
Posts: 257
C
ConnieT Offline OP
Gold Member (200+ posts)
ConnieT  Offline OP
Gold Member (200+ posts)
C

Joined: Aug 2018
Posts: 257
haha! he is eating pie and anything high calorie (and non healthy, he refuses to eat anything healthy as it won't have enough calories) so they will take that feeding tube out! His life has gone back to normal for the most part. He is eating everything, nothing tastes bad at all. His energy is coming back though he likes to make excuses at times that he isn't capable of things but that's more of a mind set...who wants to snow blow snow several times a week though i had to do it with a shovel many times! I will say nothing about his personality or behavior has changed from before cancer but I sure have changed. I am a much stronger person.

I'm not sure if he is going to do any follow up tests. He sees a speech pathologist weekly for neck exercises and something to get rid of lipodema in his face. I told him to stay away from tobacco and alcohol or he is writing his own death sentence. I was being dramatic but so far it has worked.

thanks for asking. I am a strong determined person and knew I would survive with a lot of frustration through the process. Glad to be past it and to move on in life!


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.

Support OCF


Help OCF

Shop Amazon and Help OCF

Top Posters(All Time)
ChristineB 10,398
davidcpa 8,311
Cheryld 5,260
EzJim 5,260
Brian Hill 4,744
Newest Members
KD715, Landrush, ellkay, DTK, Paul5151
12224 Registered Users
Forum Statistics
Forums23
Topics17,613
Posts194,385
Members12,224
Most Online306
Aug 21st, 2016
Powered by UBB.threads™ PHP Forum Software 7.7.1