5 months out

downinthemouth said:

Your message about constant

Your message about constant caregiving, and the advice, its just what I needed to hear! I am a little taken back that you are five months after treatment and still dealing with this issue. My husband is still in treatments and I need to know that this battle won't end once his treatments do. Trying to feed him and make sure he's had his Ensures, protein shakes, etc., has been the biggest struggle for me. I'm constantly worried about his weight loss and feel like I'm nagging all the time. I'm going to remember to have him take some responsibility. I know exactly what you are saying.

 

downinthemouth, 

Yes, the caregiving continues, but certainly not at the level like the early months. You do get better at it as you learn different ways of eating and preparing meals. In some respects it's easier because our meals are so scaled back now, but it takes a lot of experimenting to get to that point.

Keep in mind if the caregiving wears you down you need to speak up and ask your husband to 'help me help you' when it gets to be too hard. Otherwise you will be resentful, his care will suffer, and your health will decline. I've always been the one to do all the cooking and cleaning, so that's the mode I'm in. He's very old school, lol! Since his diagnosis I've been in the driver's seat because I know he will not do what it takes by himself. The thing is - they have to realize it's their decision and no one can force them to eat or take care of themselves. Don't take it all on because eventually it'll catch up to you. 

Just be sure to take time for you. Practice self care, eat right, exercise, get enough sleep, etc. If you can do that, you'll both be happier! Best of luck to you!

osadmed said:

5 months out

A few things that worked for me. I switched to Vegan Orgain Protein shakes and powders and found the the mucous reduce immediately. Just read the ingredients on the ensure. I used integrative therapy and my Asian medicine doctor suggested fresh pear juice and it not only helped the mucous problem but through seven weeks of radiation I rarely experienced dry mouth. To make him more responsible I suggest following his diet with myfitness pal app. It completely turned the corner for me with weight loss post feeding tube during radiation. I had a partial laryngectomy Sept 11 2015 Renal tumor removed Oct 1 at UPENN and seven weeks radiation at Hopkins that ended Dec 31. I went back to work last week after a feeding tube for 10 weeks post op and a trach until Jan 20th 2016. Hope it helps. Adenoid cystic of the supraglottis & unrelated renal carinoma. Regards Gary O.

Thanks for the tips, osadmed. That's interesting about the pear juice. Is it something you can get in the grocery isle? What kind of radiation did you have? I have no idea why some patients do better than others as far as the saliva. My hubs had IMRT, but now I hear they are starting to use proton beam therapy. We missed out on that, unfortunately. 

I checked out the product you mentioned online. I'm sure it's better than Ensure, but it's very expensive. Since we have so much, I'm using his leftover Nutren for the base of the shakes and adding some fruit, flaxseed, and protein powder. I see that the Vegan product uses chia seeds. I'll add some of that, too, and maybe switch from whey protein to a plant-based version. But I try to use real food for our meals as much as tolerated. Last night I made lasagna and poured a little olive oil on top followed by a generous topping of spaghetti sauce. I noticed he didn't cough quite as much. I'm sure it will improve over time. I still need to incorporate more veggies and fiber in his diet. I think soups are wonderful, but most don't  have the calories unless you add it somehow. 

I used myfitnesspal, too - the desktop version. It's a great tool for tracking calories and protein counts while weaning yourself off the tube. Once you get a few recipes and stick with those, you don't have to use it unless you want to. 

Sounds like you are doing very well! My hubby isn't back to work full time yet, but compared to where he was a few months ago, he's doing pretty good. 

Best of luck to all who are fighting the good fight!

osadmed said:

5 months out

Yes there is bottled pear juice in the grocery store but I just chose to do the organic thing and make my own. While time consuming it worked so I have no complaints. I had good old photon imrt in a graduated fashion to save my swallowing funtions and zap the front right of my throat where the tumor was attached. Lasagna was a fav of mine as well the cheese and meat sauce added protein and was easy. My average cost of the organ was $2 a bottle as I used amazon and local grocery store had deals on it. Also research the chia seeds because you have to soak them overnight to get the protein out and not have them dry up your system they hold something like ten times their weight in water and thus can negitively impact dry mouth. according to my nutritionist. i also found that the texture of seeds was hard to tolerate at times due to my surgery. They could make me gag if they didnt go all the way down. Also for added calories i used coconut oil extensively in my shakes and it smooothed them out and gave a pleasant taste.

That's actually a good price. Ensure is expensive, too. I haven't used Amazon yet. I need to get onboard with that. 

Both olive oil and coconut oil are great for getting things down the hatch. I'm still keeping an eye on his cholesterol which has risen. Thinking of having him try Omega 3 and red yeast rice although he normally isn't used to having to take any kind of meds. I know it's always iffy with supplements, but so is everything else.

Yes, pasta along with sauce and meat usually fits the bill for calories and protein. Plus it's easy to eat. I'm going to try some new recipes using gnoochi and tortellini. If you like pesto try using a little bit on top of lasagna.

Just the other day hubby made a face while eating homemade soup. He says he just does not like eating and that nothing tastes good. Still no appetite. That worries me, but I know there isn't much I can do.

wmc said:

downinthemouth...Caregiver do's and don'ts......

Now this is just my thoughts, and what I have seen and learned. The roll of the caregiver is very hard on the person. They care so much that they feel his pain, even if he doesn't. They are on a emotional rollercoaster, and they sometimes need to remember to get off. You need to set aside time everyday that is just "your time" that is very nessary for you to be able to cope with and care for. In the hospital, you let the nurse do everything, you are just support and visiting. He has to learn how to do all the careing for his self.

As in my case I had my larynx remover and breath through my neck. "I" have to clean and do all the daily care. For me, it can be life and death if I don't. Stick a suction tube 6" down my neck was really tough, as was putting 6"tweezers in my neck to clean the prosthesis and put a brush in the hole in the prosthesis took some getting use to. If, I get a dried mucus plug I will stop breathing and I have to clear it and know hoe to. Yes I have had two while in the hospital on the second night. I got then out and knew right then it is All up to me to survive. 

Now his might not be all that mine is, but it is still the same. If there is something he just can't do, that may be different. I found that when I did it all, I not only understood it better, but felt like I was back in controll of my life and not disabled, but I could do anything and be independent. Don't get me wrong my wife understood and treated me the same as before my surgery. Now she understands if my hands are wey or both have something in them I can't talk and she just says, I understand take your time and waites. This has been better for her, and I recovered so much faster, even the doctors were amazed. I had to learn how to swollow, eat, and even speak all over again. This is the "New Me" Bill 2.0; Which is good as only 5 thought I would make it.

When I was still in the hospital for 9 days, and could not speak a word for 17 days, my wife fell and hurt her foot very bad, but would not tell me untill I was home and doing good. She said I had too much to deal with and didn't need to hear that. She broke it and never said one word. The caregiver has a tough job, so don't take on what isn't nessery. Recovery for someone that went through chemo and rediation can be longer than you think. It is not messured in days and weeks. It is weeks and months, and depending where the radiation was can even be longer because of radiation damage. You need to always remind you both, you beat this and are alive. Enjoy everyday and stay strong.....

Bill

Bill, thanks for the good words of advice - well spoken and all so true. It's all up to YOU to survive, and you are one heckuva survivor! Caregivers and bystanders can only watch helplessly from the sidelines while their loved ones go through this 'journey' for lack of a better word. 

For comic relief, here's a little something for all you caregivers out there when all you want to do is make everything okay....I use this when my magic wand doesn't work, lol!

MrsBD said:

Coughing

It looks like your husband is well on the road to recovery. Some foods may be more difficult to eat for quite a while longer. At 17 months out of treatment, I still have to take my time eating, especially with meat or uncooked vegetables. They seem to find a little spot in my throat to sit atop and make me cough. That has actually improved and then gotten worse a few times. Too much salt the day before seems to affect it. As far as salivary function, my doctor recommended acupuncture to preserve the glands. It worked and also preserved my sense of taste. Other than sauces and such, having liquid with every bite might help. You are on the home stretch now! It's almost time for your husband to treat YOU to a nice dinner!

Thanks MrsBD. The coughing seems to have decreased somewhat. He does take liquid with each bite, but with no saliva at all, it's a challenge as you know. I have to remind him to take his time and don't talk too much (or at all) while he's eating. I'm still learning what to serve and realize it's a moving target. I think for him the hardest thing is that nothing tastes "normal" and without any hunger - there's no pleasure at all, so he has no desire to eat. But according to his SP it's okay for him to continue with the smoothies, so he's doing those about half the time. Whatever is easiest. 

That's great that acupuncture worked for you! Did you have it done during treatment? I'll ask his docs and see if they recommend it at this point. 

But yes...we're on the home stretch!

Barbaraek said:

Sent you a message...

Yes, yes, yes - I can relate to everything you wrote in the post. Maybe we are long lost twins???

barbara

I didn't get your message, but maybe I don't know where to look?