Nate!!!

You sound like you are doing better then I did during treatments. It sucks but you'll do it! I'm addicted to Boost/Ensure products and still use them for most of my nutrition. They also come in handy after I've vaporized...which really helps motivate me to eat.

Let me tell you though, as someone who's been where you are...it gets better and there is light at the end of this tunnel so keep at it...and good luck my friend.

Eric

I was able to get at least soft food down until the last week of treatment, and then 2 weeks afterwards. As of today (15 days post end of treatment) I am again able to eat ice cream and I had some turkey soup and even some cottage cheese with canned peaches. But for those 2-3 weeks all I could choke down was Ensure. Just before I had to go on Ensure, I was also able to eat poached eggs. Now I HATE eggs, but they at least went down easily.

I bought Juven, but it really hurt the sores/burns in my mouth. Now that they're healing, I'll try again.

Of course, my radiation was to the cheek, and mostly avoided the neck, so it didn't hurt much to swallow, just to have anything in my mouth. Mainly sores on the tongue, roof of mouth, and cheek/gums.

But those are finally healing (YEAH). I've lost about 30 lbs so far since the beginning of this, but I'm still 30 lbs. overweight, so it's not all bad...just means I'm probably not healing as fast as I could.

Hi Nate,

Try this peanut butter shake:
500ml milk
2 ripe bananas
1.5tablespoon cocoa
2 Tablespoon sugar
1 large full spoonful of peanut butter
8 ice cubes

Put it all together and whizz. Add skim milk powder for extra protein if you like.
I always made a smoothie and have one at every meal. My dentist recommended the following because it has no sugar ands good for your teeth:
Any fruit of choice
Full cream milk
1 tablespoon of skim milk powder. Whizz and drink.

I'd add in yoghurt sometimes too for different flavour. You can do this with frozen berries too. Food does get really boring and becomes such a chore. I think I ate the same foods for 3 months!! Blended cooked oatmeal with a banana is also really good. Just cook the oats ( traditional not quick oars) on low heat for 25mins in milk, this makes it soft and really creamy. Add milk to the consistency that is comfortable for you. Of you fond it uncomfortable to eat. Then blend it with a banana, adding enough milk so that you can just swallow/drink it. Hope that helps. I have some good recipes for blended soups too. Pm me on facebook if you want them. Glad those patches are working. Not long to go so hang in there.

Minh

Well,

PEG tube is in, 8 treatments left after today and honestly I dont think I will be posting here anymore for it really just brings me down and I need to stay positive. My taste is gone, and dont feel like hearing it on here about how it may take 3 years to get it back or I will feel like crap forever and blah blah blah. So the friends I have made here can connect with me on FB, I just cant be in the dumps anymore and this site depresses the shit out of me. My therapist I have now seems to think part of my problem is this site, too many opinions and people just saying the wrong things at the wrong times. I will now leave it in my Doctors and Gods hands from here on out. It wa nice meeting everyone, this is my goodbye. I just cant feel this way anymore, and I want to take my own path from here on out.

Thanks,
Nate

Sorry you are so down Nate...I think having the PEG tube in and getting good nutrition and fluids will make you feel lots better. My third week was really bad - like you say, life was never going to be better, felt HORRIBLE, can I ever finish this, WHY did I START this, etc. but once I passed that hump I have been doing better. As you, I have no taste, have a really hard time eating so am just drinking ensure, juice, water and some protein shakes. While I didn't want to lose body mass, I DID expect to lose more than one stinkin' pound over this deal! LOL

Glad you are seeing someone to help you through this - we all have our own way of dealing and yes, people DO say the wrong things at the wrong time. Good luck on your path!

Michele in IL

Nate - I hope you read this - you remind me so much of my son. He only posted a very few times and then just couldn't anymore because he said it depressed him so much and I know it did because I could see and feel his pain. We all have our own way of healing and you need to do whatever it is that works for you. I think what helped Paul was that I could still come here and when I saw something positive that I thought could help him, I would just print it out and leave it for him to read whenever he felt like it. It was a tremendous help to me, too - because I got lots of good advice and I felt that people really cared about my son. I wonder if maybe your Mom or your girlfriend would care to join this forum so they could help you through the bad stuff as well as get support for themselves, too?
Michele - I'm so glad that you are doing a little better, Hope everything continues to improve for you.

Hi Anne Marie thanks for the encouragement for Nathan. I am his mom and do get on here from time to time. He has met some great people on this site and I think those people like you will help him through this. He has just had a bad last 7 days. The mucositis has taken its toll and he is unable to swallow much of anything. The PEG was necessary to keep him hydrated and out of the hospital and missing treatments. He is so close now. It is just something he never wanted but now is necessary. I hate that this disease takes people to the brink of death to cure them. I pray that researchers will come up with a better way someday. But until then as the doctor told us this is all they got to fight with. He is almost there and we have to keep encouraging him that this will get better. Thanks to all of you again that have supported him through this.

Please understand that the 2 to 3 weeks after treatment ends is usually the worst time for all of us. I just don't want anyone to let him think the day treatment ends he will start to get better because he won't until that period also runs.

My problems also started after my 2nd Cisplatin so it's also important IMO that he understands that while he feels like crap, this is NORMAL. Everyone gets like this but we all finally walk out of that dark tunnel and recover.

Also make sure that he gets at least 2500 cals and 48ozs of water each and every day. Also get him to continue to use his swallowing muscles every day as they can quickly "forget" how to work which can lead to post Tx swallowing difficulties that some never recover from.

This is a time that other complications can pop up like dehydration and constipation. A simple test of pulling the skin on the top of his hand can help determine dehydration. If you pull a pinched piece of skin up and it stays up, he's most likely dehydrated and he needs fluids ASAP.

Stay on top of the pain. Some pain pills work for some but not everyone so if something doesn't work try another family.

If he doesn't want to seek our advice please be the go between as the the next few weeks are critical as far as info that he and his caregiver could use and most importantly we can supply.

A big welcome to Nate's mom!!!!!

Im sure he is going thru some rough days. I wish him the best. Please make sure he is getting in at least 2500 calories and 48 oz water daily. Even more is better. Also make sure he is swallowing everyday and stretching his mouth open wide a few tiems daily. These small things will help him to avoid even more bad things from happening down the road. The better his nutrition, the better he will feel.

The last 2 weeks of radiation are the worst and the first 2-3 afterwards are also bad. He is almost finished and needs to not lose his motivation. Its not easy to keep that up. He has many friends on OCF and some from here on FB too. We are all in his corner rooting him on!!!

Hang in there, Nate!!!! Sorry to read that you have decided not to be a part of OCF any longer. I guess its all what you make of it, kinda have to filter things sometimes. Wishing you all the best and most importantly, good health!!!!

Nate and Nate's Mom,

I agree with Christine and what David said about intake. We're all behind you and we care.

Please keep us posted on how Nate is doing.

Connie