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Week 4 is the one where the caretaker pulls their hair out?

NJShore's picture
NJShore
Posts: 411
Joined: Nov 2012

I am soooooo frustrated, we saw the dr on Friday, and My husband refused to go to the bathroom before his weigh in.. He said water has weight. He then went to sleep last night and in his many trips to the restroom dropped 5 lbs overnight on our scale, in 8 hours. He's suppose to get in 3000 calories, tries things and says I can't finish, has more than likely 1200 calories.. No spare weight to lose. His dr said his treatment changes if the need to make a new mask.. I try to offer wide varieties, I shop and find old 'soft favorites'. And get looks like I don't get it. Most of the time the refusals are over taste. Are we eating for health or taste!?

To top it off, he can't have the regular nutrition drinks, he has glucerna that is mech lower in calories, and refuses the PEG. Today he's down under 30 ounces of water, and told me I am not giving him a chance.. I don't get it. I am afraid if we don't do what he should do he could be risking his life.

This week he told someone he didn't consider this a serious disease because he was going to kick it.. But I don't see/feel the kicking and it scares me. I've had cancer and I did fight.. Every moment, to do what I needed to..

Any words of wisdom? I will look like the cancer patient... I am ready to pull my hair out!

I can't really vent and get good advice anywhere but here.. Thank you.

Kari

Skiffin16's picture
Skiffin16
Posts: 8052
Joined: Sep 2009

Just because there is a fairly high success rate, it's not a given... Bottom line, cancer is cancer.... Treatment, calorie and hydration intake are imperative, as are the doctor's orders..

The high success rates depend on very specific regimes and protoculs.

If he doesn't get the needed calories and hydration, it'll catch up to him more than likely. You don't wanna be on the wrong side of recovery, you want to stay ahead of the game.

Not sure how you can convey this to him..., if he is stubborn, more than likley he's going to figure it out on his own.

Everyone is different, so depending on his weight and genetics, he could get through with the small amounts he is getting in, but with a lot of weight loss.

That all slows recovery, and makes it tougher to recover.

Hopes you find a big stick to bring his thinking around to your knowledge and concerns...

Best,
John

VivianLee5689's picture
VivianLee5689
Posts: 546
Joined: Aug 2012

I am empathizing with you right now. Caring for someone with cancer is hard work. Especially when it seems that they aren't working as hard as we are. Trying to get someone to eat or drink is such a chore and can make us feel like choking our loved one. I used to harp and harp at David about drinking enough. Well he has been hospitalized three times and all three he was dehydrated. At least now he listens to me, but I am really happy he has a PICC line so that I can get a liter of water a day through the PICC and leave his stomach open for calories. Then I only have to get a liter of water in him through his PEG. I wish I could give you some good advice, but my patient was head strong. All I can do is say I get you. Hang in there.

phrannie51's picture
phrannie51
Posts: 3597
Joined: Mar 2012

I'm pretty sure if it was my husband, we'd be having the same battle. YES...he is eating for health...taste/pleasure eating took a back seat when he was diagnosed. NOTHING is going to taste good, and most things won't have any taste at all....it is simple nutrition over starving to death. Longtermsurvivor mentioned one time how many swallows it took to get a can of Ensure down....for some reason that stuck with me thru treatment...All I had to do was swallow 8 to 20 times (depended on where I was in the course of treatment)...It was all about getting the stuff down, regardless how it tasted.

When I started treatment I weighed 97 lbs...which had the Dr.'s agreeing to put in a PEG before I ever started treatment because I didn't have any fat to lose...I finished treatment at 81 lbs....The biggest weight loss happened in the last 3 months of chemo, not during the concurrent rads and chemo. Still...a total of 16 lbs wasn't a bad loss for this treatment (there are people on here who have lost 10 times that amout). Your hubby's goal to lose the least amount of weight he can manage....and "it doesn't taste good" doesn't cut it....granted no taste doesn't give a lot of inspiration to eat, so counting the swallows and making that the goal can take the place of taste.

p

blackswampboy's picture
blackswampboy
Posts: 341
Joined: Jul 2012

it is very difficult to eat with no taste, and mouth pain. he's got my sympathy there.
but at some point he's not going to have any choice: he either gets the PEG tube, or the weight loss gets serious enough that they put him in the hospital with feeding by IV.

I dropped from 155 to 115 before I saw the light. at 5'10" and 115 lbs.--it was not a pretty sight.
they made me get the PEG tube right off the bat, before I knew what it was or why I needed it. I was in a daze, and went along with it. but I wasn't hungry and didn't care about using it for the first month. it kinda scared me, so I ignored it.
until I hit 115, which reeaaally scared the water out of me. on top of that, my doc threatened me with hospitalization unless I got serious about tube feeding.
the heavens opened up, and I got PEG tube religion. I've gained back 20 lbs. since then. still not enough, but I now I want to gain it back slowly enough so that it's muscle and not flab.

getting 3000 cal. a day by eating is extremely difficult, even if you're not diabetic. my non-professional opinion, he needs a PEG tube.

donfoo's picture
donfoo
Posts: 1144
Joined: Dec 2012

" I dropped from 155 to 115 before I saw the light. "

At this point, did you commit to try to eat via your mouth? Was it just so painful you could not do it or what influenced the decision to go PEG? The more I read here to more I am going to try like hell to choke down sufficient calories orally and unless there is just no option will I go with a tube.

All this is new to me but if it is a pain issue, then I am thinking I will just med up before I eat. How about those numb sprays used by dentist and doctors? If it is pain I would shoot some of that down the throat first then try to slide some smoothie down there but you all know if I am just out of my tree.

blackswampboy's picture
blackswampboy
Posts: 341
Joined: Jul 2012

early part of treatment, I was still eating a few things like applesauce and pudding. but I wasn't hungry, and wasn't getting anywhere near enough calories. I had the PEG tube, but it creeped me out and I wasn't using it. I also had trismus, which limited my jaw opening and made it more difficult to eat.
but by the end of rads--with messed-up taste, burned mouth & no saliva, and threat of hospitalization--I was using the tube exclusively.

5 months later, I'm just starting to eat via mouth again. I was amazed about two weeks ago to actually feel hungry. that was weird--first time since about April that I had a craving to eat. I used to watch Food Network and not feel hungry--it was more like doing anthropological research into the feeding habits of humans.

so anyway, there are lots of possible issues with eating. you may not run into any of them, inshallah. if it helps, you can get a prescription for magic mouthwash with lidocaine. advantage of magic mouthwash is that you can swallow it and it numbs all the way down.
I probably would've refused the PEG tube if I'd had time to think about it. but my doc is clever, and he ordered it up before I could argue.

Ladylacy
Posts: 457
Joined: Apr 2012

Kari, I know exactly how you feel and at times I just scream and say if you don't care, why should I? My husband has been fighting cancer since July 2010. Surgery in March 2011 complete larynectomy, throat reconstruction due to radiation, neck dissection. When he was finally able to start eating again it was a very slow process but once the doctor said he could swallow, the doctor pulled the feeding tube so my husband had to swallow. Now my husband is 6'4 and has always been very underweight (generally 150) but had gained some weight before he was diagnosed. Thankfully he only lost 16 lbs from August 2010 until May 2011. He relied on his PEG tubing the whole time. He was doing okay with eating until April of this year when he was diagnosed with cancer at the cervical of his esophagus, inoperable. He underwent another 35 radiation and 7 chemo.

Since completing this treatment he has had no desire to eat and after a dilation in October he has been able to swallow again. (He has been NED since September's PET/CT and the dilation in October). Thankfully the doctors put another PEG tube in before treatment (due to his weight) started because without it, I'm sure he would have been hospitalized. Your husband needs to stay hydrated otherwise his kidneys will shutdown. Mine didn't the first time and he had problems, after that first time he did get the water in. I got a 32 oz. tall water contained and made sure he down at least 2 a day.

I know exactly how you feel, but have found out that I am only wearing myself down fighting with him about eating and doing something other than sitting in front of the TV and sleeping. Even the doctors get on him because once again he is loosing weight. Doesn't even drink his nutrition drinks like he was told to. Just remember to take care of yourself because you are important too. If you need to scream to feel better do it or just walk out and say if you don't care, I don't care. Believe me, I know how hard it is and have learned that there is basically nothing I can do to make him do what he is supposed to do.

Sharon

donfoo's picture
donfoo
Posts: 1144
Joined: Dec 2012

Kari,

You know him better than anyone but if he is at all open to have a chat with someone who can counsel on the most critical need to hydrate himself religiously. The other day on TV there was a show talking about survival after the earth fell apart 12/21 lol. They stated that the hum body can go for 40 days without food but only 4 days without liquid. If that message sinks in then forcing oneself to drink might become easier to accept.

Don

CivilMatt's picture
CivilMatt
Posts: 2803
Joined: May 2012

Hi Kari,

What a funny place to stand one’s ground. If he wants to see what untreated H&N cancers look like, they are just a Google search away (gross you out).

I managed to drink one meal a day (everyday) and the rest by PEG. Even getting 3,000 calories a day I lost 43 pounds. Tell him not to hold out for taste, he most likely won’t have any for months. Just drink the water and use his PEG and sleep. Getting up to pee is a just reward for staying hydrated. Getting up always gave me a chance for another rinse, another shot of magic mouth wash and back to sleep.

As for fooling anyone about your weight, forget it. They caught a guy at my rad onc smuggling weights in his pockets (don’t get any ideas).

He might win the battle of wills but that doesn’t help win the battle of cancer. Using the PEG is an easy thing to do and then it is done and you can sleep (same goes for drinking water).

Best,

Matt

NJShore's picture
NJShore
Posts: 411
Joined: Nov 2012

To all of you.. 

I have come back to reply several times the last few days and tried to participate, small comments here and there.  I have had some rough days trying to figure out my dilemma... And I heard you, it was a lot to work through. Being together for 6 years and married only two, I was caught by surprise that I saw a side of my husband that was new and so out of character. It scared me, yet I had trouble defining it clearly. I am the type of person who manages well.. Usually, a side effect from my career.. However, this is sooo personal, and so not work.  I saw my husband trying to get away with not trying, feeling very low and not walking his talk.

i finally put on my work mind, and treated him like a low performing employee. He responded.. I told him how scared I was and that I couldn't fight for him, and that he couldn't fool anyone, he was hurting himself, and asked what I could do. Reminded him that his actions weren't supporting his plans to recover quickly. That he was risking his life, and that cancer won't play fair, it will take advantage of his weakness. I also was empathetic that this wasn't easy, and we needed to do this together.

and I got my Christmas wish.. Renewed vigor.. He figured out how to boost his glucerna drinks with malt powder, drinking more of them, using pain meds to eat, just as the dr said to... And the reward is his weight is up 2.5 lbs and I haven't heard one excuse in two days..

thanks for your wise words.. It helped so much.. 

For other caretakers.. A little tough love is sometimes key, when delivered gently..

Kari

ToBeGolden's picture
ToBeGolden
Posts: 697
Joined: Aug 2010

The caregivers really have the tough job. And sometimes the hardest part of that job is figuring out what to do. Glad you found something that works. This Cancer business is a fight every inch of the way. Feeling sorry for oneself is only allowed for a very short period of time. Good work. Rick.

tonyb's picture
tonyb
Posts: 69
Joined: Mar 2011

well, for me all i can speak for is from the patients side. i can tell you that i was never able to get the required calories down and keep them down.

 i went from 198 pounds down to 146 pounds in about 2 months. (now at 175 and growing) So what i am telling you is, hang in there , he may be doing all he can at this point but just keep trying.

  if you can't get 3000 calories today try for 2000 and when he can manage it go for more. anyway, just more is better, and if you can't get in all that you should, just try for as much as you can.

 Hang in there. Tony

 

luv4lacrosse's picture
luv4lacrosse
Posts: 1369
Joined: Jul 2010

My first journey with cancer once treatment was finished, I dropped 77 lbs. I do think being in a very good state of physical health going in is a huge advantage. I was a competitive powerlifter and fortunately had some extra mass to spare, so allot of other side effects and illnesses were not much of a problem. After going through it once, and now again as we speak, if there are 2-3 pieces of advice I can put out there, the most important one is hydration. His health will go into a nose dive real fast if he does not commit to over hydrating every day. I kept a journal and tracked to the ounce how much water and also Gatorade as it has electrolytes I took in each day. What I could not choke down orally, I pushed through my tube. I did have two occasions where due to not over hydrating, I ended up admitted into the hospital, so that should tell you how important this is.

The 2nd piece of advice is to get calories in every day. Again I kept a journal, and found out after about 2 weeks of trial and error, I needed 3,700 calories / day just to keep from losing weight. Rapid weight loss, especially in a person who has no weight they can spare going in, can really send their health into a negative situation very quickly. At first, I focused only on the quantity of the calories and not the quality, once I was able to keep my weight stable and then start to see some gain and also felt much better, I then focused on the quality of the calorie. I used whey and egg protien powder supplements 5-6 times a day in smaller servings as high levels of protien will cause constipation and is hard on the kidney and liver to process, so again here is where overhydration plays a key role. I consumed the shakes both orally and through my tube, basically a "whatever it takes" attitude.

I then was able to start to introduce healthy solid foods back into my diet, and it only got easier and better from there. The last piece of advice, and I probably should have put it first, is positive mental attitude, and a genuine will to survive. I was fortunate in the fact that I am extremely self motivated and goal oriented, and just looked at this as another major construction project to manage. My wife who was also my caregiver and an RN and god love her for the few occasions where she got real tough on me and in my face when my positive attitude went south from time to time. It really hurts and is motivating when your partner in life of almost 25 years says "if you don't give a F$#K, then why should I?"

Wow, I have rambled on way too long. Feel free to PM me and I can give you some nutrition tips and light excersise tips that will definitely help him.

FYI, the profile picture of me was after my 1st bout with cancer, so coming back to where you were, or even better than before can be done.

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