Husband's weight is in free fall now and he's only 10 radiation treatments into it. He's lost maybe 4 kg in the past 2 weeks, weight is now about 56kg (5ft 9 or 10). He is so thin. Some days he's eaten really well, others not so good but still the weight falls. He says he can't eat more, can't use Sustagen because of nausea or if not that then burping or belly pain or indigestion. Says he simply CAN'T take in more.

Today he's had his weekly chemo. He ate a modest breakfast, no snacks, minimal lunch and 75 mls of Jevity 1.5 cal/ml for the first time using the PEG. Now he's having a small dinner.

This is the thing we are going to argue about. The dietitian told him today what he needs to take in. In trying to get him to actually do it though he got mad at me saying I don't understand, am not listening, he can't possibly do it because of the way he feels, that he will do it tomorrow when things might feel better. But I'm thinking I've been hearing something like this for days and days and tomorrow is never better. I know he feels awful. I own up to my frustration and worry.

I ended the discussion by saying that he heard the dietitian's instructions the same as me. He knows what he needs to do and it is on his shoulders to do it. I will make him whatever he wants, whenever he wants it and be happy doing it because I care about him but that I won't chase, mother or dog him. (At least not for the immediate future -- but I didn't tell him that.) I am at a total loss for what else to do. And I'll say this too because this seems to be a safe place to say it -- I am worried that he isn't going to fight this for himself or me and the kids because it seems too hard. I don't know whether to hold his hand or kick him.

I would be interested to know what motivated and what demotivated the rest of you when it came to keeping intake up. This just sucks all around.

I'm sooo sorry for what you and your husband are going through! What your husband said really struck a chord with me because I heard almost the same exact words from my son when he was going through treatment. He got mad at me, too and told me that I didn't understand and didn't know how he was feeling and that the pain was too much, that his throat was raw and bleeding and he just couldn't swallow anything. He was depressed and I felt so badly for him. So I did just what you did just now. I came on to OCF, and got some practical help and compassion. One of the OCF "angels" told me I should put on my "nurse from Hell hat" and tell him what was what. So I did. I told him that he had to start eating and drinking or I would call my daughter (his older sister who is a police officer with a gun) and get her to come over to help me push him into my car and take him to the hospital to get a feeding tube put in. Somehow that got him jump started. I felt so badly about yelling at him while he was suffering so much, I knew I was about to fall apart, so I left and drove around the neighborhood and just cried my heart out.

Now, for some other ideas:
1) My son used "magic mouthwash" which is a prescription the doctor can give you to numb the area used in swallowing. My son said it only worked for a short time so it's probably a good idea to try to get as much nutrition in in the early moments of eating as possible. There are different types of mouthwash and my son switched back and forth on this because when one didn't work as well anymore, he would go to something else and then found that the original mouthwash worked ok again. There was one - don't remember now which one- that was OTC (over the counter) at the drugstore which worked well, too.
2) Tube feeding. My son never did get the feeding tube but there are lots of different experiences and advantages on OCF re tube feeding and you could do a search (see search box upper right this page) to see what might help your husband.
3) You could make a chart - which is what I did - of everything your husband manages to consume in food or liquids. You could include med on the chart, too and also what comes out of his body. This way, my son didn't have to feel like his mother was telling him what to do and he could see for himself what his progress was. I made it clear I would show the doctor the chart.
4) I would print out postings from other OCF people and just leave them by my son's bed for him to see when he woke up and this became the advice known as "what other people are telling me and not my mother telling me what to do".
5) YOU: It is important to take care of yourself. Caregivers can get stressed and depressed and fail to get proper nutrition. Make sure to check with your doctor about what your needs might be. From what you say, it does seem like there are some positives to hang on to in that your husband does have moments when he can eat so there is still lots of hope. I'm sure you will get ideas from others with some more recent experience. Let us know what is happening.

Hi Laura, My brother was still eating OK 2 weeks into rx. However, he wasn't too far past your hubby when he was only taking water by mouth just to keep his swallowing going. He ended up totally dependent on the the PEG, which he detested at first. We now can't believe some people go through treatment without a PEG. Rick may well get to the point where he is only feeding by the PEG tube. Si certainly did, and that was OK, but he did drink as long as he was able - nearly to the end of week 6.

Simon went from 85kg to 65kg and, like everyone else, had some very low times. It's so hard to see through to the end of treatment when you are where the two of you are at the moment, but hang in there. It will probably get worse, but it will get better.

As far as what you can do to get him going, since he was diagnosed in June, I ring Simon every day, some days 2 or 3 times to check he's doing what he should and to give him a bit of a pep talk. His wife has more than enough on her hands keeping it together with 4 little kids, so I am
co-hassler/berater/researcher. I ring and ask the same questions over and over again. How much water have you drunk today? Have you been for a walk? What have you eaten? Why haven't you had more to drink/eat? Are you staying out of the sun? And again, have you drunk enough water? (that one again and again!!) Why have you only had 3 cans down the PEG. etc etc. I do this because I want him to see that there ARE things he can do to empower himself and get a bit of control over the situation rather than feeling utterly helpless.

Does Rick have someone who can do this for him? For his sake as well as to take the intense pressure off you; someone as well as you he can debrief to about the blow by blow of the awful treatment, and to encourage him to do what he needs to do?

I've sent you a PM. Linda

If your husband wants to struggle then he is doing everything right. Getting enough calories and hydration are NOT optional and he can NOT make it up the next day. I cant stress this enough. I always thought I could play catch up since I wasnt feeling good. I would always think tomorrow I will do better. Well one 'tomorrow' I found my son practically carrying me to a wheelchair and being wheeled into the hospital. There they took one look at me before they did ny vital signs and I was admitted into the hospital for malnutrition and dehydration. I actually felt so bad that I thought I was starting to die. Your husband is on the same path. It is not optional, every single day he MUST get a minimum of 2500 calories and 48 oz of water.

I would suggest you get him to read these posts or print them out for him to read. Let him see what so many other patients and caregiver have to say about this. I would also suggest that for 2 days he listen to you and that you get him the right amounts of intake and then ask him how he feels. I guarantee your husband will feel better. There was another member who also struggle and I warned them they would end up being hospitalized but they couldnt turn things around. It came as no surprise when they posted they were being kept in the hospital to finish their treatments.

Since he has a feeding tube why not do night time feedings? I have a feeding pump that I hook up at night and I let it run while I sleep. This is a very easy way to make sure he gets enough nutrition. Make sure the head of the bed is propped up for the feedings.

I hope your husband begins to get more in right away.

I understand how your husband feels. I was right there. My sister stayed with me during treatments. I cried, yelled and tried to get her to stop making me take in nutrition. She was persistent to the point of being mean. She kept saying I'm trying to keep you alive.

In addition to being persistent while I was awake, every time I went to sleep she connected my peg tube to a feeding. Even if it was a short nap, she hooked me up.

I lost 11 pounds the first week of treatment then we started the sleep feedings. I lost a total of 15 pounds during the entire treatment.

A couple of months after treatment was completed, I sent her a text "thank you for all you did meany". She replied "you're welcome pukey" LOL.

Angie

I totally identify with what your husband is feeling. What motivated me, was when I was admitted to the hospital because I wasn't getting enough nutrition. My husband kept after me, but I gave him the same arguments that your husband is giving you. When I went for blood work after I had finished my treatments, my oncologist took one look and insisted that I be hospitalized. I cried and asked if I couldn't just take a pill, but I was hospitalized for three days to build up my nutrition. That did it for me. I hadn't been using my PEG, but I did then. I also started eating yogurt and ice cream and making milk shakes out of Ensure, a banana, and a scoop of ice cream. I hated the PEG, and I even hated trying to eat, but I didn't want to have to go back to the hospital.

I think you are beginning to see a few trends here. The Caregivers are sharing that they know exactly how you feel as it's tough to get the patient to eat because of how badly they feel. The patients are affirming your husbands feelings that it sucks and the feelings are real.

It's not that your husband doesn't want to eat more, he probably has it in the back of his mind(I know I did) however physically it "feels" impossible. I remember that feeling where I just couldn't let anything more be jetted down the PEG tube even though I was losing massive amounts of weight, 70 lbs total which was about 1/3 of my body weight at the time.

My opinion is that he needs assistance, either via IV nutrition or chemical to ease other symptoms and increase appetite. Now you've inquired before about medical marijuana on these boards and I think that should be an option. I have several friends on these forums that have used it through treatment successfully to help motivate them to eat, relieve nausea caused by opiate pain killers, help reduce the need for opiate pain killers and lift the mood. Some of those patients use it in a state where it is not legal however take it anyways because it has worked for them. It's worth a shot in my opinion.

Treatment is tough and the patients and caregivers should have every option to help get them through this hell, just how I see it. I wish going through I didn't have the preconceived notions on mj and had used it despite it being illegal where I live, I think I would've had an easier go.

Keep your chin up

Eric

And I thought it was a private hell we had entered. You people are wonderful. You have given me many things to think about.

Or Eric, as my sister always says to me, "keep those chins up"!

Simon was hospitalized for a couple of weeks, week 4 and 5 of treatment, I think, because of nausea and inability to keep even water down. He also had an infection, or at least a spiking temperature that couldn't be sorted with antibiotics.

Point being, Rick may at some stage need a short stay in hospital, which won't necessarily be a bad thing - it will give you some respite - and he needs to start using the PEG. He will end up thinking it is a lifesaver.

Si also had severe indigestion (still has his PEG and indigestion is still an issue though not so much now) but managed this with constant sips of water and indigestion meds.
I've just remembered Simon saying he should have had a food pump with his PEG right from the word go, so ask your treatment team about that. It makes feeding much much easier.

Your story sounds exactly the same as the one Alex and I went through nearly 18 months ago...

Alex is 6'1" was 60kgs when diagnosed which was already 10-15 kgs under his ideal weight and he dropped to 48kgs before being hospitalised.

Like your husband, he complained that he just couldn't take any more food and he would try again tomorrow when he felt better. Like you, I bullied, let him go, cried, cajoled and tried reason. I even went so far as to accuse him of slow suicide and if that was what he was doing, could he please inform me now so I could leave and not watch him do it (my worst day and one which I am not proud of). I tell you this to demonstrate I know the frustration you are feeling.

My Alex could not tolerate TwoCal and literally 3 sips into a can, he felt unwell, complained of bloating and the 4th sip caused him to bring it back up. Actual food was not an option due to difficulties with all of the above plus swallowing issues and pain.

This all happened during induction chemo, and the oncologist refused to treat any further until he gained weight. TwoCal made Alex sick so he was put on a pump which ran 8-10 hours overnight with a product called Nutrison. He was hospitalised at first as his weight was so low, they were concerned with "refeeding syndrome" which is a condition where the body can't cope with the return to normal nutrition and can cause life threatening events such as heart attack.

In hospital, he learned how to use the pump and gained 5kgs in 5 days. He took 2000 cal per day this way and whilst his weight never recovered to anywhere near normal, he gained 10kgs and stayed there all through radiation. I learned how to work the pump as well but my help was never needed. Alex used the pump for the next 12 months at home and became so adept at changing the bags over in the middle of the night, there were occasions when I would poke him awake, believing he had turned off the alarm on the machine and not changed the bag.

There appeared to be two issues: one was nausea and vomiting if pushed; and the other was bloating where Alex felt extremely uncomfortable after 3 "mouthfuls" where the 4th would cause him to throw up. This also happened when PEG feeding so was not a psychological or gag reflex. The radiation oncologist led me to believe that Alex's issues were unusual and something to do with Alex's attitude (hence my extremely inappropriate outburst). The oncologist believed that it was a matter of drive or will power. The oncologist was wrong!

My advice: Find someone who will listen to the issues without judging and then attempt to solve the problems. We ended up with slower feeds via pump overnight (needed to be changed after 4 or 5 hours unfortunately), medication for reflux (Somac) and an antinausea med (Maxalon)to help get the stomach contents moving which I believed was Alex's major problem although have no idea why his treatment would cause this.

Your husband is not abnormal and don't let any healthcare professional convince you otherwise. He is probably feeling just as scared and frustrated with his inability to eat as you are.

Please feel free to PM me with a phone number if you need more guidance or information, and I will call you at your convenience.