Hi Folks!

Getting used to the new reality after free flap surgery (grafts healing, open trachea SLOWLY closing, GTube feedings, etc.). Life is not too bad. The only challenges I am having is that the GTube (PEG?) site is sore, I feel like I have to hold my stomach when I walk. Is this normal or something that I will have to live with for the next 3-4 months?

Update after surgery is that even though there is no metastases or nodal involvement, they want to do 4-6 weeks radiation and 'baby' chemo. I know this is insurance, but need to gather more information to solidify it in my own mind. Thinking about second opinion from City of Hope. Again, not disagreeing with their recommendation, I just want to know everything I can going into this. Thoughts?

The only other thing I am having a bit of a struggle with is smelling food and wanting to EAT. Not even on a liquid diet yet. My relatives are great cooks and while I am very thankful they are feeding my hubby, smelling it is torture. I have asked them to eat out and they are pretty good about it, and the formula feedings definitely help. Any word on how long until they let you start a liquid diet orally?

Thanks guys

I'm not sure why you can't eat or drink yet. I suppose as you say the wounds are slowly healing. To me it seems like a healthy sign that you want to eat. When do you see the doctors again to get a clear signal about swallowing etc?

I know the pain of seeing others eat with relish. I can taste things perfectly now but can eat only with difficulty. Soft foods go down a treat but I'd love a burger or even a piece of toast. However, MOST of the time one adjusts to the new normal and there are only flickers of envy. And in your case, you will probably eat again very soon.

Do you have trismus or limited mouth opening? If so, have you been given exercises for this? This can affect eating in the future.

Great to hear that you have no nodal involvement or metastases. If it is Stage 3, I guess the tumour was quite big. Whatever the reason for the rads and chemo, it's probably a very good one. Stamping out any microscopic cancer cells now will pay off in the future.

All the best!!!

HeatherB, you shouldn't have to bear with the soreness at the PEG site. The soreness is likely a bit of inflammation (is your tube leaking a bit?) or it could be granulation. Make sure you clean it three or four times a day; dab gently, do not rub, rubbing causes granulation. Do a saline soak for several minutes and put a barrier cream (like Proshield Plus) on the site, then cover it with a dressing. It should clear up the inflammation and the granulation. ChristineB also uses a burn cream for the area. The next time you see your doctor, do ask them to take a look at it.

I think my microvascular doc isn't taking any chances and I am totally fine with that. Seeing him tomorrow and the major surgeon on Friday to get my questions answered on how the surgery went, what was discovered to change their minds to go for the rads & chemo, etc. I am relatively confident that they will let me eat before starting the next phases as they want me to gain weight and have a head start going into that process.

Probably the major reason he doesn't want me to eat is that the free flap is still pretty big (I have a tiny, almost pediatric mouth) and they don't want me to chomp on it.

Lots to learn - what a process! Thx for the vote of confidence

gmcraft - thanks for the suggestions. My home nurse is coming soon and I will run them past her as well. Its just gotten more and more sore - today is definitely the worst. Had to take some Tylenol. Hopefully we'll get this sorted straightaway.

Will let you know what works. I am beginning to have a sneaking feeling that it may not have been placed perfectly to begin with. Add that to 20+ pounds weight loss over the past three weeks (don't worry, there is plenty to spare) and I guess it changes the physical playing field a bit.

Thx a bunch!

Get that soreness in your PEG site sorted out, it could be infected or something, your body is sending you a message. Call the doctor, you should not have to deal with that pain.

I hope you are feeling better soon. I hear you about wanting to eat.

Nurse Practitioner has said I most likely have an infection at the port site. Still really sore, taking Tylenol for it until I see the Doc tomorrow morning. I knew it shouldn't be this sore, but its good to have her confirmation.

My Kiwi Friend - I neglected to answer your question about Trismus. I think I do have it. Can't quite open my mouth all the way. I will speak with my Doc about that tomorrow.

My main concern with being able to eat is that I can nourish my body with real food (I was a believer in whole foods for years before this) so that I am more than ready for radiation and chemo. I have read what is in the formula I am taking - Isosource - can't find much to build on and the carbohydrates are very high. Blech. Just want to do the best I can for myself - even if I have to run it through the Vitamix & sip it

Patients with a feeding tube need to be careful when lifting or doing anything physical. Avoid lifting anything over about 15 pounds. More than that and it pulls on the feeding tube which will cause granulation (which hurts like heck!).

At the feeding tube site, ask the doc for some silver sulfadine cream or you can also use something like a dab of neosporin ointment around the site. Cover it with a couple drain sponges. You may want to secure the tube to have more comfort. There are all kinds of ways to do that. Some patients will wrap an ace bandage around their stomach. Ive even heard of patients using those pregnancy bands as well.

Your daily intake needs to be high enough to prevent weight loss. This can quickly spiral out of control. Going into treatment you need to keep every single pound you can. Every single day your minimums to hit should be at least 2500 calories and 48-64 oz of water. If you can take more in that will only help make treatments easier and help you to recover from surgery. Dont be afraid of gaining weight, your goal should be to maintain your original weight. By losing weight during treatments it means your body is fighting so much its burning up more calories than you are taking in. This really is one of the most important things to focus on. I cant stress it enough to monitor your intake and push yourself to make the daily goals. Ive seen far too many go thru treatments and suffer greatly due to not taking in enough calories and water. I was one of those patients myself and cursed myself for being so weak as I lay in the hospital feeling horrible. I hope you can avoid getting into that cycle.

Best wishes with your continued recovery.

Christine - thank you so much for the information. The tube is still super sore. Seeing my surgeon tomorrow and this will be the first question on my list. I feel absolutely fine as long as I am laying down, but getting up, walking - feels like I am being stabbed. Definitely not the way I want to spend the next 3-6 months.

As far as weight goes, I was overweight before surgery and have lost over 20 lbs in the past three weeks. This is not weight I need by any stretch of the imagination. However, I am definitely keeping up with what they told me to put in my feeding tube. I am using Isosource 1.5 cal, but am concerned that the nutrition is mostly sugar and canola oil. I have come across an alternative, organic product called Liqiud Hope - have you heard of it?

Thanks so much for your suggestions