Welcome to OCF! I wish you had found our site months ago! I know we will have info and support to help get your stepfather thru this difficult time.
As you can see, your stepfathers intake is vitally important! He must speak openly to his team of doctor about all the problems he is still having with pain and eating. Radiation with or without chemo can be very difficult for patients. Even the recovery phase can be very challenging as rads continues to work for weeks after the treatments have stopped. He wont be able to heal without proper nutrition. The better his intake, the easier this will be. If his weight is not holding steady, its a red flag to his doctors that he is not getting enough balanced nutrition. Being in pain is NOT helpful to any patient and will only cause additional unneeded stress on him that makes everything so much harder. Pain MUST be controlled for your stepfather to make progress.
The feeding tube would not have been recommended if it wouldnt help your stepfather. A PEG tube is done by surgery to insert the tube into the patients stomach so formula can be given on a regular basis. Most patients will have this option given to them before starting treatments. Many patients have a difficult time processing their diagnosis and will initially refuse to get a feeding tube. This is mostly about the mental stigma of being so sick they arent able to adequately feed themselves. Ive had to use a PEG tube for many years. It really isnt as big of a deal as it seems. Its just another tool to get people thru some difficult times. The PEG tube is for patients who might need it for a longer time, at least for a few weeks/months. Your stepfather being 5 months post rads may only need a more temporary nasal feeding tube thats much easier for patients who only need it on a short term basis. That can be inserted during a doctors visit without surgery and is much easier to remove when he is stronger and back on his feet more than he currently is. I suggest at least asking about if your stepfather could benefit from a temporary nasal tube.
Other options that can help your stepfather are adding high protein whey powder to his intake. If he has a feeding tube this can easily be done or it can get mixed into the formula he drinks. Protein helps speed healing. He may also benefit from a seeing a speech pathologist and a dietician. Your stepfather may need a barium swallow test to ensure he is swallowing properly.
If he hasnt already gotten magic mouthwash to help numb his mouth when he eats as his doctor about that. The kind I had was made of malox, benedryl and lidocaine. To use... your stepfather should take about a tablespoon and swish it around in his mouth prior to trying to eat. Swish it around for 30 seconds to 1 minute then spit it out. This makes eating temporarily a little less painful. He may also need a more steady type of pain meds and might need to see a pain management specialist who could prescribe a fentanyl patch that provides round the clock pain relief. He must follow all directions exactly and not rip, bend, tear, fold or otherwise alter the patch and no long hot showers or baths while using it either. The patch takes about 24 hours to start working and gets changed every 72 hours, placing the new patch on a different spot every time. When his pain is controlled he will be better able to eat and push to take more in.
The better he does with his intake, the easier his recovery will be. Since he's had such a hard time Im guessing he has lost a considerable amount of weight. That tells me he needs to take in more than most patients who at the very least get 2500 calories and 48-64 oz of water daily. I know I already touched on this but I cant tell you enough about the importance of his daily intake!!! In your stepfathers situation Id suggest making his daily minimums 3000 calories or even 3500 calories daily and 48-64 oz of water... every single day!!! No playing catch up by skimping one day and saying he will make it up the next. That doesnt work and your stepfather will be in a constant game of playing catch up which (speaking from my own experience) never happens. I also had a very difficult time and ended up hospitalized for malnutrition and dehydration all from not taking in enough on a daily basis.
Heres a couple of other helpful things I have posted previously to help other patients who are struggling with their intake. Ive drank many of these shakes and it greatly helped me to maintain my daily calories. These giant chocolate, peanut butter milkshakes are loaded with calories. You can make it as thick or thin as you can tolerate.
Milkshakes and smoothies are easier going down than many things. Also try ensure or boost to try taking in the most balanced diet as possible. The following list should help you to find things you can eat easily like canned peaches (these will slide right down) or cream soups. I also enjoyed yoo-hoo and chocolate milk during rads and recovery, plus the extra calories sure didnt hurt. You may find that would help you too.
List of Easy to Eat Foods
Here is a recipe for something I used to make and drink when I went thru treatments and recovery in 2007. This shake has anywhere from 1500-2500 calories depending on how its made. The list of easy to eat foods may help you too, they mostly have a smoother texture and are easier to eat than most other foods.
(All measurements are estimates)
Giant High Calorie Choc-Peanut Butter Milkshake
3 or 4 cups chocolate ice cream (regular/full fat type)
2 tablespoons peanut butter (smooth type)
2 tablespoons chocolate syrup
1 or 2 cups whole milk (can substitute half and half to add even more calories)
1 scoop carnation instant breakfast
1 scoop high protein whey powder (protein helps with healing, check with doc if this is ok)
Blend this extra long to make it very smooth and creamy so it goes down easier. If the shake is too thick, add more milk to thin it down to whatever consistency works best for you.
One other helpful idea is Centrum has an adult liquid multivitamin thats readily available at grocery and drug stores. Ive been taking it daily for 6+ months and can honestly say its helped me tremendously. I think this would be very helpful to your stepfather who recently completing rads.
I hope your stepfather will help himself by taking the advice from someone who has been exactly where he is. Your stepfather may be in a state of denial about how serious his condition is. He may not want to listen or accept anyones input. I suggest printing this out or emailing it to him to allow him time on his own to read what advice a fellow oral cancer patient/survivor offers. Ive helped thousands get thru treatments and recovery and know all too well from struggling thru it myself how hard it is and what will help him to get stronger and feel better. Ive counseled hundreds of patients and caregivers over the years by phone and email about recovery so I really do know what Im talking about. Im also sending you my phone number for your stepfather to call me (East Coast Standard time). Click on the tiny flashing envelope next to your My Stuff tab near the middle of the top of the page. Best wishes!!!
