Jo -

Sorry for the delayed response. Busy time of year with the kids starting back to school and the late season construction crunch all hitting at the same time.

Two years plus with the tube and pump for me. Sometimes I can get away with a quick push for a box or two if I'm in a rush, but not often.

Not able to really swallow anything other than.....Dr Pepper or orange juice, really cold with small sized crushed ice. Not a standard swallow, just more or less dumping it down and relying on the ice to cause a reactive swallow. 16 oz can deliver around 200 calories. It's not for everyone. My doctors laugh about it now, but they were not happy when I first told them what I was trying. (High potential for aspiration.)

I would love some soup - French Onion, without the cheese of course, but it's a little on the thin side. Between the two of us, French Onion served with crushed ice just wouldn't be the same!

Usually, (all the time), I rely on the standard IsoSource - Non Flavored. Between 8 and 10 boxes per day. The steady diet, supplemented with help from Dr Pepper, has kept my weight consistent +/- 3 lbs for the last 18 months or so. Started with vanilla flavor, but that tastes terrible when / if it comes back up. I have found that if I remain on the same feeding schedule every day, things are not so bad. It's when I miss a feed or sleep in, that's when problems can start. (Also, if I'm on a schedule, I stick to it if at all possible.) Although its regimented, it seems to work for me.

Do you have any reflux issues? After the recurrence, I have to keep my head elevated or risk heavy regurgitation with potential to aspirate.

I've tried pushing watermelon juice through. Not bad. Same with cranberry juice.

I get what your saying about getting into a funk. I used to cook all the meals for my family. (Can't beat family time around the table.) Now.......once in a while I'll cook, but I can't stay while they eat. Miss those times. I've found that during "my feeds", I enjoy reading. My daughter and / or wife will join me from time to time. I really enjoy the quiet time with them.

No matter what though, the energy level and reserve strength, is just not there and I'm fairly certain that it will not be back. That is what rubs me the wrong way more than anything else.



1997 SCC Tumor on tongue - Partial Gloss
1997 Met to Lymph
Radical Neck Dissection / 2nd Partial Gloss
6 weeks chemo and radiation
Brachytherapy
2011 Stroke
2014 Recurrence SCC at Base of Tongue / Hemi-gloss
Free Flap reconstr from thigh
PEG Tube
Radiation
Permanent Issues with speech and swallowing
2018 - Bleeding throat / mouth
2019 - Bleeding throat / mouth
2019 - 3rd diag Cancer SCC Base of mouth / jawbone
2019 - Aug remove portion of jaw / right pec det / free flap closure and tongue