Struggling Caretaker

Nwife

I have to admit I have taken so much from this blog without setting up an account. I cannot tell you the number of times I was awake all night reading the entries on this site Looking for hope and strength.  My husband, 52, was diagnosed with cancer in July. I am still confused with the descriptions you are all so comfortable with(T3, N2C, M0 HPV16). Can someone please explain this to me!  Secondly he had seven weeks of Cisplatin, every Friday.  He had 42 radiation treatments(7560 rads).  He started this journey @177pds. his last treatment of radiation was Oct 21, chemo ended in Sept.  No feeding tube.  He is barely holding his weight at 130.  He does not seem to be gaining anything.  He eats cream of wheat with 1/2 banana and real maple syrup for breakfast, a scandishake before noon. Two poached eggs for lunch and a pudding and another shake before supper.  I make homemade soups, cream based which he has for supper and everything had to go thru the blender because he wants nothing too thick or with texture!  He just seems to be losing not gaining and feels he needs a feeding tube because he still struggle with swallowing. I am his worst enemy at this point..hates me most days.  Can anyone tell me if this is normal for this treatment?  He had his 3 month scan on Saturday..doing a lot of praying.  Appreciate any input..you guys are awesome and I am one of many that I am sure read this site without joining.  Thank you for the months of being there....the wife of a struggling husband...

Nwife

Help please

Help please

DarcyS

Also a caregiver

The letter and numbers refer to: T-Tumor size, N- lymphnodes affected, M- metastisis outside of head and neck area,  and hpv-the hpv virus caused the cancer.  My husband was 55 when diagnosed and is now 60 and clear of cancer.  Has yours had a swallow study?  This can help determine the problems and give info. for some exercises to help.  Be sure to talk to his doctors about the swallowing and inability to gain weight.  Maybe there is a nutritionist on staff who can help with a high calorie, easy to swallow diet.   Also, my husband's doctors wanted him to eat a very high protein diet to aid in the healing process.  He also completed treatment without a peg tube.  Continued swallowing is a must for maintaining this function.   I would also recommend upping his caloric intake daily.  Extra calories really seem to be needed after treatment.  Hang in there!   Be sure to take care of yourself as well.  This is a difficult time, but there are better times ahead!

Nwife

DarcyS said:

Also a caregiver

The letter and numbers refer to: T-Tumor size, N- lymphnodes affected, M- metastisis outside of head and neck area,  and hpv-the hpv virus caused the cancer.  My husband was 55 when diagnosed and is now 60 and clear of cancer.  Has yours had a swallow study?  This can help determine the problems and give info. for some exercises to help.  Be sure to talk to his doctors about the swallowing and inability to gain weight.  Maybe there is a nutritionist on staff who can help with a high calorie, easy to swallow diet.   Also, my husband's doctors wanted him to eat a very high protein diet to aid in the healing process.  He also completed treatment without a peg tube.  Continued swallowing is a must for maintaining this function.   I would also recommend upping his caloric intake daily.  Extra calories really seem to be needed after treatment.  Hang in there!   Be sure to take care of yourself as well.  This is a difficult time, but there are better times ahead!

Thank youThey mentioned.

thank you Darcy for replying.  He is so angry right now any suggestion I make is resented.  Military man, desert storm veteran..he is the strongest person I know and now is at the end of his rope and I am the person he is most angry at.  I understand he is going thru so much, I want to help but right now he is lashing out.  His Oncology nurse mentioned the swallow study last week.  He believes the feeding tube is the answer.  I am not sure they would consider this since his last treatment was 0ct 21 .  Any suggestions how to encourage his calorie intake? more shakes?

DarcyS

Nwife said:

Thank youThey mentioned.

thank you Darcy for replying.  He is so angry right now any suggestion I make is resented.  Military man, desert storm veteran..he is the strongest person I know and now is at the end of his rope and I am the person he is most angry at.  I understand he is going thru so much, I want to help but right now he is lashing out.  His Oncology nurse mentioned the swallow study last week.  He believes the feeding tube is the answer.  I am not sure they would consider this since his last treatment was 0ct 21 .  Any suggestions how to encourage his calorie intake? more shakes?

Calorie additions

Sorry to hear he is struggling with the recovery.  It is a dificult time and I know my husband felt like it was taking forever with very little improvement daily.  Getting outside, exercise, any diversion was also good for the both of us.  Not sure about the peg tube as mine never had one.  There are others on this site who can help with that.  The doctors thought not having the tube really helped my husband retain and regain swallowing function. For added calories, try adding olive oil, heavy cream, avocados, any smooth, healthy additions do make a difference.  My husband also had ensures as part of his daily eating for several months.

swopoe

Is he willing to talk to

Is he willing to talk to someone other than you? a psychologist or a social worker maybe? My husband's nutritionist gave us some really good tips as well as recipes for high calorie easy to eat foods. I am a caregiver too. I know how hard of a job it is. DarcyS is right that a diversion would be great for the both of you. I am thinking of both of you.

Nwife

swopoe said:

Is he willing to talk to

Is he willing to talk to someone other than you? a psychologist or a social worker maybe? My husband's nutritionist gave us some really good tips as well as recipes for high calorie easy to eat foods. I am a caregiver too. I know how hard of a job it is. DarcyS is right that a diversion would be great for the both of you. I am thinking of both of you.

Communication

communication was never his strongest asset.  I am thinking (although I hate the idea) of not going into his Oncology appointment Tomorrow.  Perhaps he will be more open if I am not there.  He gets IV fluids 3x a week again Because maintaining his blood pressure has been a challenge also. he just seems to continue losing weight and it is scary.

Thank you for commenting...

CivilMatt

Welcome

Nwife,

Welcome to the H&N forum, lurking is good, participation is better (maybe).

It sounds like he is eating fairly well, just add some calories (nuts, oil, etc.) and he will be gaining weight.

It also sounds like he is a bit depressed?  It is a little soon, but make sure his blood work and Thyroid are good.

I did not get off smoothies for 7 months, but my wife banged me on the head and I started flying right (just kidding).

Best of luck,

Matt

Nwife

CivilMatt said:

Welcome

Nwife,

Welcome to the H&N forum, lurking is good, participation is better (maybe).

It sounds like he is eating fairly well, just add some calories (nuts, oil, etc.) and he will be gaining weight.

It also sounds like he is a bit depressed?  It is a little soon, but make sure his blood work and Thyroid are good.

I did not get off smoothies for 7 months, but my wife banged me on the head and I started flying right (just kidding).

Best of luck,

Matt

Weight Loss

hello Matt and thank you for your advice. His weight loss is so concerning and although he is eating He seems to keep losing.  There is nothing left to him-he thinks getting a stomach tube will help him gain more weight, do you know if that is true?  I worry that it may be an added complication but  I do not want to discourage it if it would help  As I mentioned previously his las radiation treatment was in October.  42 radiation treatments seem more than what others have received On this site- maybe that is why it is taking so long for his throat to heal?

 

 

 

Ladylacy

Your husband

I would certainly ask about a feeding tube what can it hurt.  Head and neck radiation, we were told up front was the worse.  Our doctors recommended my husband have a feeding tube before any treatment was started and they told him if not needed easy to remove.  Well thank goodness he went with the feeding tube because after one week of radiation he couldn't swallow at all.  He was very underweight to begin with, always was. 

As long as your husband agrees to keep swallowing if he gets a feeding tube, I don't see why not.  There are others who will disagree.  My husband lived on a feeding tube until after surgery.  He underwent radition and chemo first and then 6 months after treatment ended, we found out that treatment didn't work so he had surgery and during the surgery we found out that the radiation had really damaged the back of his throat and it had to be reconstructed.  About 2 months after surgery he was able to eat again, slowly and only things easy foods to swallow and then after another 2 months the feeding tube was removed.  But a year after surgery he was diagnosed with a second primary and surgery was ruled out.  So he underwent more radiation and chemo.  At first they weren't going to insert a feeding tube but due to his weight, they did, thankfully because from that day until the day he passed he couldn't swallow again.  He really wanted to but couldn't radiation damaged too much. 

I can say that in the 5 years he fought the battle, he never got mad at me, but then again he never really told the truth to the doctors or the hospice nurses he had.  I would have to tell them he was lying to them.   He would always tell them he was doing good and no pain.  Only until the end would he tell the hospice nurses how he really felt, except for the pain.  And yes he was depressed but wouldn't tell them, I had too.  I told the doctors the truth and he didn't mad at me and in fact would say without my help he wouldn't have made it as far as he did.  Men are stubborn is all I can say and won't tell the full truth when it comes to their health.

Get his thyroid checked because radiation can damage the thyroid and that regulates so much.  At first mine was diagnosed as hypo but then when he started losing too much weight, he was diagnosed as hyper so they had to adjust his thyroid medication until he was hypo again.  Had to crush all his medication and then mix with water and put into his feeding tube.  He was never able to take time release medication because you can't crush that.

There are drinks that are very high in calories and vitamins.  If you insurance will cover it, get a prescription from your doctor.  They are expensive but definitely help.  Even carnation makes one that is very high in calories.  Research them.

Wishing you both peace and comfort and take care of yourself too because you are important too in this journey.  Caregiving is very hard.

SASH

Nwife said:

Weight Loss

hello Matt and thank you for your advice. His weight loss is so concerning and although he is eating He seems to keep losing.  There is nothing left to him-he thinks getting a stomach tube will help him gain more weight, do you know if that is true?  I worry that it may be an added complication but  I do not want to discourage it if it would help  As I mentioned previously his las radiation treatment was in October.  42 radiation treatments seem more than what others have received On this site- maybe that is why it is taking so long for his throat to heal?

 

 

 

Adding tasteless calories

There are weight gain powders that you can get at most vitamin stores.  Some of these can pack in extra calories to the foods you are making him.  The one I had was 700 calories for 2 scoops of the powder and can be added to his shakes, oatmeal, cream of wheat, soups, etc.  Just make sure it is an unflavored one or you might end up making him chocolate soup. 

georgiasurfer

Get a Feeding Tube

My husband completed treatment without a feeding tube, losing about 10 pounds.  However, after treatment he started dropping weight like mad and after a 35 pound total loss, his doctors said he needed a feeding tube immediately.  Get the tube.  It is literally saving his life, he doesn't have to worry about choking down calories when he has zero appetite.  He still eats some soft foods daily and drinks plenty.  But not having to worry about eating enough calories is a huge bonus.  To give you an indication of how many calories healing takes, he's intaking about 1000 calories MORE a day than prescribed.  At his last appointment he had not gained a pound since having the feeding tube.  But thank goodness, he hadn't lost any either.

georgiasurfer

Nwife said:

Weight Loss

hello Matt and thank you for your advice. His weight loss is so concerning and although he is eating He seems to keep losing.  There is nothing left to him-he thinks getting a stomach tube will help him gain more weight, do you know if that is true?  I worry that it may be an added complication but  I do not want to discourage it if it would help  As I mentioned previously his las radiation treatment was in October.  42 radiation treatments seem more than what others have received On this site- maybe that is why it is taking so long for his throat to heal?

 

 

 

Benecalorie

If he doesn't get a feeding tube, Benacalorie is a good addition and VERY HIGH CALORIE Boost.  Both are sold on Amazon.

phrannie51

It takes a while for some of us

to gain our weight back....I still haven't gotten back to what I weighed when I started treatment, and that was 4 years ago.  It seems that your hubby is taking in a decent amount of calories....but for his metabolism, it's just not enough.  Our bodies become roaring furnaces going through, and healing from treatment....we burn energy at twice the rate.  He may be right about needing a feeding tube for a while, especially if he's in a lot of pain when he swallows, or is choking when eating.  I think it was Sash who mentioned the protein powder to add to the scandi shakes....lots of calories and protein in it.  It may be, that the lack of taste, and the lack of spit are making eating uninteresting.....or worse, thinking that food will ALWAYS taste like sheetrock, or liquid plaster....that idea has gotten more than a few people down.

Some things I learned during and after treatment.  1) the blander, the better....I could taste vegitables, but fruits either burned or tasted awful.  No spices, very little salt....bland in the real sense of the word.  2)  Milk....4% milk.  I managed to sip 1/2 gallon a day.  It gives the illusion of having spit way longer than sipping on water.  Plus it's packed with calories, and it doubles for hydration.  3) I ate by an alarm clock that I kept beside my chair.  Having no appetite, and no real interest in food....I couldn't count on "feeling hungry" to know when to eat.  Let HIM have the clock, so you're not the meanie making him eat (the clock says it's time).

I know you're having a hard time, emotionally....it's ok to leaving him alone for a few hours, and go out with girlfriends for lunch, or a movie....he really doesn't hate you....but he does feel comfortable taking his anger out on you (my husband would be the same way). This doesn't go on forever....honest!!  When he's back to feeling better, gaining weight, and getting out....he'll feel grateful that you helped him through this, stuck by him even tho he was being a jerk. 

p

PS....Maybe you should go to the Oncologist alone, and give him a heads up on possible depression....if the Dr. brings up antidepressents, he might go for it.  Lots of us have really dragged our feet about taking them, I did for 3 years....when I finally gave in, I couldn't believe how much they helped me out of the funk. 

Nwife

Oncology follow up

my husband went for his Oncology follow up yesterday.  His PET results were back from Saturday which showed good results in the throat /neck but the concern is his lungs due to pneumonia and empyema.  He is in the hospital and they are draining the pus from around his lung.  He has been to the radiation oncologist every Friday for the las thre weeks complaining of not feeling well. The rad onc gave him oral antibiotics and pushed up the scan but I just feel no one was taking my husbands complaints seriously enough including me!  I am so disheartened and scared that they will find cancer in that fluid they are testing from around his lungs although they seem confident that is likely an infection and not cancer related.  No wonder he was losing weight and not progressing - he is so sick!  Thank you to all who have taken the time to respond to my thread.  I truly appreciate all the advice and information.

Nwife

phrannie51 said:

It takes a while for some of us

to gain our weight back....I still haven't gotten back to what I weighed when I started treatment, and that was 4 years ago.  It seems that your hubby is taking in a decent amount of calories....but for his metabolism, it's just not enough.  Our bodies become roaring furnaces going through, and healing from treatment....we burn energy at twice the rate.  He may be right about needing a feeding tube for a while, especially if he's in a lot of pain when he swallows, or is choking when eating.  I think it was Sash who mentioned the protein powder to add to the scandi shakes....lots of calories and protein in it.  It may be, that the lack of taste, and the lack of spit are making eating uninteresting.....or worse, thinking that food will ALWAYS taste like sheetrock, or liquid plaster....that idea has gotten more than a few people down.

Some things I learned during and after treatment.  1) the blander, the better....I could taste vegitables, but fruits either burned or tasted awful.  No spices, very little salt....bland in the real sense of the word.  2)  Milk....4% milk.  I managed to sip 1/2 gallon a day.  It gives the illusion of having spit way longer than sipping on water.  Plus it's packed with calories, and it doubles for hydration.  3) I ate by an alarm clock that I kept beside my chair.  Having no appetite, and no real interest in food....I couldn't count on "feeling hungry" to know when to eat.  Let HIM have the clock, so you're not the meanie making him eat (the clock says it's time).

I know you're having a hard time, emotionally....it's ok to leaving him alone for a few hours, and go out with girlfriends for lunch, or a movie....he really doesn't hate you....but he does feel comfortable taking his anger out on you (my husband would be the same way). This doesn't go on forever....honest!!  When he's back to feeling better, gaining weight, and getting out....he'll feel grateful that you helped him through this, stuck by him even tho he was being a jerk. 

p

PS....Maybe you should go to the Oncologist alone, and give him a heads up on possible depression....if the Dr. brings up antidepressents, he might go for it.  Lots of us have really dragged our feet about taking them, I did for 3 years....when I finally gave in, I couldn't believe how much they helped me out of the funk. 

Thank you

i have been worried about his mental state a lot.  On Christmas Day he learned his sister(54) Has lung cancer and it is stage 4.  He has so much cancer in his family. He is one of 13 children -including himself 6 have had a type of cancer and 3 of the 6 have passed from their disease. With his latest complication of pneumonia I am so concerned about his mental state and physical strength battle all of this. 

l

tommyodavey

Yourself

Nwife,

It rips my heart to read what you've been going through.  If I had lashed out at my wife during my treatment she would have gone directly to a therapist to help her deal with me.  That is my suggestion to you.  Yes, he is very sick and you are very worried.  But you need to also take care of yourself so you can be strong for him.  If you crumble, he will get worse, not better.  Please seek out some mental health professional to help you deal with all this.  Is there any other family who can come to help you? My 3 sisters all volunteered to come stay at my house to give my wife a break during my treatments.  We said no but it still was very hard on my wife vs me.  Mine was mostly pain.  Hers was mostly mental anguish watching me suffer and not being able to help me swallow or eat.  At least he's able to do that.  It took me 2 weeks before I got any soup down.  Got hospitalized once due to dehydration.  So no, I don't recomment the PEG tube unless his doctors think it will improve his mood.

Please keep posting his and your progress.  Right now I'm more worried about you than your husband.  He will recover most likely but you need to recharge and rest. 

Take Good Care of Yourself,

Tom

Raddude

Get the tube...

I am amazed at people who make it through without the tube. You can put so much into the tube, supplements, vitamins, medicine, juices (I put in over 10 pounds a day of vegetables), soups, blended dinners, eggs, high calories shakes and water. Swallowing is very important, so you have to continue some eating and drinking.

 

Noellesmom

Well

I have to say your husband sounds very similar to my husband.  Started out at 175 and lost down to 119. Had a PEG but never used it because he consumed easily 3000 calories a day by mouth so no need for the feeding tube for Jim. 

About 6 months post-treatment the weight started coming back on and he is back to 175 six years later.

Anger issues- it's part of the grieving process.  The life you knew is gone and that is hard.

There is a caregiver site associated with this. Please visit. One thing you must grasp is that no matter how much you love him and are there for him, your husband is going through this alone.  This is his fight: your support is important but when he is alone in his head, he's alone with the beast.  Give him space to do that.

As he fights his fight don't forget to take care of yourself. You are fighting your own fight. At the end of it, you both need to be whole and well.