Julia, even his family doctor can write the script for Enurse etc., however, they tend to be more understanding at PMH. When he gets the script, please make sure that he gets the doctor to fill out and sign the form for the Ministry (of Health?). The pharmacy will require that.

That's good if your son can eat "mushy foods" - Here are some from one of Christine's posts:
<<soft scrambled eggs with cheese
poached eggs
yogurt
pudding
cheesecake
milkshakes (I used to drink choc/peanutbutter milkshakes daily)
baked beans mashed up like mashed potatoes
mashed potatoes
mashed sweetpotatoes, or candied sweet potatoes
chicken and stars soup
wonton soup
french onion soup (can make very easily at home, just beef broth and sauteed onions, piece of toast on top and provolone cheese broiled to melt it)
pancakes w/ real maple syrup or smucker's blueberry syrup
french toast
canned carrots
peas or green beans mashed
glazed carrots
cottage cheese
buttered soft, fresh white bread with jelly
soft serve ice cream
applesauce
tomato soup made with milk
zucchini squash either dipped in egg and lightly fried or sauteed in butter
jello
canned peaches or pears
asparagus (overcooked)
baked potato with butter and sour cream
Some meats are very tender when cooked in a pressure cooker like turkey legs.
To help balance your diet, add a scoop of dry carnation instant breakfast to milkshakes. >>

When my son had a really sore mouth, his favorite was softly scrabbled eggs with melted cheese on top. The eggs just slid right down.
Re a feeding tube, when the doctor asked my son if he wanted one, it kind of scared us, but what did we know? We hadn't found OCF yet and so we said "No" but it's only temporary and thinking back, I wish he would have had it - it might have avoided a lot of pain. So you should definitely ask about it. It's better to be prepared. Hope everything goes well next week.

Thank you Anne Marie.

My son was told surgery now is his best option. They propose to remove entire mid face to floor of eyeball and to 1/2 of palette, rebuild with bones from the scapula and also removed lymph nodes. Cancer has spread to the trigeminal nerve but they don't know how far. Told him his face would be permanently numb on one side. He will have radiation 6 to 8 weeks after surgery, not now because if he needed surgery he would not heal. I was not able to find anything on your site about this, anyone else here had this type. Not sure what we can expect long term.

Julia, I'm glad surgery is an option but what an ordeal he is going to endure. I have met people at my local hospital support group who have had extensive facial surgery but can't think of anyone here who has reported an operation like that. I hope someone who knows more than me responds soon. I wish you both well.It's quite amazing what reconstructive surgery can do.

Julia, PMH probably has the best surgical oncologists in all of Canada. They also have the latest equipment. It sounds like a pretty big operation. Is there anything he can do to boost his strength before surgery?

Hello Julia,

I have had this procedure. Known as a maxillectomy, it can involve the removal of bone under the eye, around and including the nose, cheek, jaw and palate. All of these can be replaced with a plastic prothesis or alternatively with a flap from the patients own body. Your son will have the bones and blood supply taken from his shoulder. I had mine taken from my leg, the fibula bone.

The surgery is long and complicated. The immediate post surgery requires a great deal of care, and attention. You do not want complications. After about a week there will be a great improvement, and things will continue to improve for months afterwards. It is amazind how well the flaps work.

I have had a Weber Fergusson incision for this surgery twice, and that does take time to heal. The scars are very fine, and hardly observable. The big challenge is learning to swallow, eat, and speak. They come back slowly, and it does take patience. My recovery has been like a long running soap opera. Something happens everyday, but over a week not much has happened at all. You have to be a dedicated fan to stick with the story.

The follow up radiation therapy was challenging. However, the answer is strick discipline and following the protocols around mouthwashing and oral care carefully. I found my taste was severely impacted, and by the end of it managing the blisters, and ulcers was trying. The saddest part was losing my eye lashes and part of my hair. My appetite disappeared with my taste, and I had to be disciplined to consume the right amount of calories per day. Real food was best, and topping up with Ensure and smoothies worked at the end. Energy does very during radiotherapy. Monday and Tuesday were good, Friday and Saturday not good at all. Sunday full of energy, just in time to start the whole thing again.

However, all has now recovered, my hair and lashes are back. My taste and appetite have returned, although I feel I have the taste buds of a five year old. No to chilli and curry. They have to be relearnt. A definite no to smoking, alcohol and other toxins. Healing takes times and the right physiological environment.

I have used complimentary therapies, including massage, meditation and yoga. There are some great apps for your phone for meditation, anywhere, anytime. I have had the benefit of a psychologist, who has helped me focus on the positives, and there are many. She is also paid to listen to my discontent. That saves my family and friends, and keeps them supporting me.

If I taken anything away from the last year it would be this. The more you help yourself, the more help you will receive. Being positive, polite and engaged in your treatment, helps the team to work with you.

I wish your son the very best.

Thank you RedPoppy for the information. It was good to hear from someone that has had a similar surgery. We know it will be tough but my son will have lots of support and he is going into this with a good attitude.

Update on my son, he had a maxillectomy August 18 at Toronto General. Bone, muscle and blood supply was taken from his shoulder. It was a difficult first week but as drains,trachea tube and IVs were removed and he could talk he started to feel better. Dr. said they got clear margins, he will have an MRI later and decision will be made as to what treatment he needs. He has a little complication now with his face swelling up a lot and more pain which started when he ate. Apparently the saliva tube is blocked, they told him it can happen and will fix itself, he has more pain meds now and antibiotics. Thankful that they left the feeding tube in because he is back to clear liquids. He didn't loose his eye and from what we can tell, the surgery side of his face is the same as the other side, excellent job on the incision, it will be barely noticeable.

Son had surgery August 18, his problem now is severe swelling and lots of pain when he tries to eat. The duct from the saliva gland was cut and he was told the pituitary gland has to learn to shut down the saliva gland. He is out of the hospital and has had to go on a liquid diet, even smelling anything cooking will make his face swell. No answer from the Drs. about how long it will take. Has anyone else experienced this and have any idea of how long it will take to stop producing saliva???