Okay everyone - I think this is worth a bash - let's seeif we can creata Dummies guide to oral cancer - all your top tips in one place. I will kick this off though I am one of the big Dummies!

My top tip is don't wait for hospitals and doctors - chase them and hastle them. I know they are very busy and work extremely hard BUT it is your life in their hands and mistakes DO get made as I know from my own and others experiences. I could still be sitting around waiting for a letter for a PetScan - that would bever have arrived because they forgot to post it. We only found out becasue we rang to hastle after a few days - imaptience is a virtue - and they had forgotten me altogether thinking someone else was dealing with it. I only got reffered to the hospital in the first place because my wife pushed the dentist. So tip one HASTLE HASTLE HASTLE - do not think that you are anything more than a number and a name on a list - even if they are all very nice people - and they are.

Come on the rest of you - lest get that guidebook together!

Hope I am in more pain than you are

Tony
Original Post
Hi Anthony........great idea.......I think that you'll have lots of helpful input. We really need something like this. When I first started on this rollercoaster ride 3 1/2 years ago I had no idea what I was in for but when a surgeon told me to call this other surgeon friend of his because there was too much for him to handle I did and the second one(Dr. S.) said I'm really sorry but I'm too busy for new patients. Well I saw red and have no idea where it came from but I said to him let me tell you a thing or two.......I'm too busy to die........his answer was WHAT? and mine was you heard me I'M TOO BUSY TOO DIE . Guess who my doctor was (Dr. S.) and still is but now I only go to him once a year. Although I eventually went with him I also had another opinion. This other doctor told me that we had an urgent situation here and I asked him what would that be and his answer was well, if you have what I think you have I'll have to operate on your neck and your brain.......Why my brain.?.......well I think you have brain cancer........my answer was NO I DON't and I didn't. My point is don't be afraid to speak up. I never used to open my mouth but I'm glad I did and as far as I'm concerned that aecond doctor ( Dr.S.)saved my life. When all this first started I spoke to my GP and asked now what do I do and his answer was you do nothing.......we'll make all the necessary appointments, he and his staff were wonderful bucause I had no idea what was to be. They made all the appointments, tests, etc. One other thing, someone once told me that the magic word was NEED as if to say I NEED you to help me, so don't be afraid to use it. And you Anthony seem to be doing much better good for you. Joan P.
Hi.

Susan you reminded me of something that happened to me post-op. I was on an NG tube and NPO (with a tongueful of stitches it was a good idea):

Make sure BEFORE YOU GO HOME FROM THE HOSPITAL that ALL of your prescriptions are in liquid form. I went home with three scripts and two of them were in pill form; the directions said not to crush or open, but we improvised.

It worked.

Julia
Hi Anthony...........my tip for you is to laugh at least once a day and if you happen to laugh out loud it's even better, seems to releive tension. Hopefully the following will bring a smile to some people although not the first one. About a year and a half ago a friend said I love your sexy voice and I wish I had it and rudely (bad day) I said do you want my sexy Cancer voice and she said no just your voice and then she told me that her throat was weird and that she couldn't swallow too good, I yelled get to the doctor NOW, well she has mylomia which for her is inoperable, she is doing well and taking treatment, so be careful what you wish for. The other day I called the hospital for the nutritionist and she called me sir so I told me that I was a she, she of course was embarassed and I told her don't be because it happens all the time. Then we both laughed. The other night my sister and I were in a restaurant and I asked the waitress where the ladies room was and she said you are so soft spoken and my sister said loudly no she's choking. When I came back the waitress was a little shaken and apologized but everything turned out ok. I just thought of a tip......do something nice for someone today. No only will it make them happy but you'll feel good and it will be lesss time that you'll think about your own problems. Enjoy you day..........

Joan P.
Hello again,

Thanks to Joan for the reminder to keep the humor happening and to Tony for the nudge to actually note tips (!). They may be in somewhat random order, but here goes.

Here's a start:
PEG TUBE INFO AND TIPS (Part 1)
~For PEG tube (or "G-tube") care, hydrogen peroxide on gauze pads works very nicely for daily cleaning around the stoma site. (Best after a shower.)

~Just after having the tube inserted, it's not unusual to have a bit of drainage as your body adjusts to having the tube. After Stephen had a PEG tube inserted (just before beginning chemo and radiation), we didn't receive much instruction at the hospital, and we were worried about the healing, taking a shower too soon, etc. We were fortunate to have quick access to advice from a doctor (my dad, a retired surgeon) who assured us that it's almost impossible to screw it up.

~When using a 60ml syringe for taking medications through the tube that are more granular in consistency and which can be taken with food (such as sulfasalazine, for colon issues) it works best to have a thicker liquid in which to suspend the medication. Otherwise, the tube can get blocked unexpectedly, causing explosive spillage and possibly creating interesting designs of food-sprays on the wall, or surprisingly very far across the room. We finally learned to laugh at these occurrences, but it's preferable to avoid the clean-up. (Especially with sulfasalazine, which becomes a stubborn bright orange sand after being crushed.)

~When crushing medications, hold crusher with fingers while turning crusher rather than holding in the palm of one hand and turning with fingers of only one hand. This can result in an sensitivity to pressure on the palm opposite the first knuckle, I believe due to a displacement of a tendon. (As the assistant pill-crusher for Stephen, I ran into this problem in my left hadd, which was alarming to me as a musician, since that part of my hand presses against my bassoon as I play. After adjusting my pill-crushing technique, the injury gradually healed itself over the course of a couple of months.)

~If you have a long PEG tube, the NexCare sensitive-skin tape is worth the higher price for less irritation of the skin in taping up the extra tubing so it doesn't hang down. If you hold the tubing to the side of the stoma (leaving a bit of a loop so as not to pull at the base of it), and place two pieces of tape in an X just above the clamp, the end of the tube can be looped through and stays in place pretty well. (My husband liked wearing a t-shirt under his shirt to help keep a "tube bump" from showing.)

~The low-profile button tube is a wonderful change from the long PEG tube. (After a year and a half of the longer tube, Stephen had a mic-key button tube inserted several weeks ago during an EGD procedure.) We're making plans to go swimming. We've been advised by our doctor that there's no concern about the tube site being exposed to the pool water, but Stephen plans to wear a t-shirt to avoid stares (and, as he put it, to not freak out any kids!)

SWALLOWING ISSUES (Part 1)
~To help address swallowing problems, noted below is an exercise from Dr. Reza Shaker (Milwaukee College of Medicine) for the suprahyoid muscles (critical for swallowing) to strengthen them or to help keep them strong while going through treatment.

~Check with your doctor to see if the Shaker Exercise is appropriate for you. If you're just beginning treatment, find out from your doctor if you can start doing this exercise right away to help prevent swallowing problems later.


<Beginning of Shaker Exercise Info>
SHAKER EXERCISE

Dr. Reza Shaker (pronounced “shah-care”) developed the Shaker Exercise as an exercise to improve swallowing. It is specifically designed to exercise the muscles under the chin, or the suprahyoid muscles.

These muscles help to open the top of the esophagus, allowing food to pass completely downward through the esophagus, leaving no residue in the throat after the swallow.
This exercise is a simple two-step exercise, to be done three times per day for six weeks

Step 1:
• Lay flat on your back, on floor or bed.
[Per Dr. Shaker: “Tighten your teeth.”]

• Hold head up, looking at feet, for one minute. Relax for one minute

• Repeat this sequence two more times. Do not raise your shoulders while lifting head.
[Per Dr. Shaker: “The more your forehead is pushed toward your toes, the better.”]

• Remember, do not raise your shoulders while lifting your head.


Step 2:
• Raise your head thirty more times and look at your feet. Do not hold these head-lifts.

• Again, don’t raise your shoulders off the bed or floor, and remember to breathe.

Breathe normally while performing both steps of the Shaker Exercise.

Please perform the Shaker Exercise three times per day for the next six weeks.

For more information, contact:
Reza Shaker, M.D.
Chief, Gastroenterology & Hepatology
Medical College of Wisconsin at Froedtert Hospital
(414) 456-6840

Video link available on Medical College of Wisconsin Web site :
http://www.mcw.edu/display/docid26360.htm
(Click on “Shaker Exercise video” to view)

Approved by Dr. Shaker for distribution, 9/17/08
<End of Shaker Exercise Info>


Are we able to attach PDFs in our posts? If so, please let me know how!

More to come in future installments...

Susan
Ok Anthony..........you asked for it and all it needs is a couple of us to get the ball rolling. To Susan and Stephen........I had my feeding tube for 2 1/2 years and although it was my enemy I now know the benefits but it's really amazing that something that was once hated is now just a faint menory and I agree that we don't get many instructions after and during treatment. Why when we are going through treatment or sometimes in la-la land they tell us things. Why not BIG and maybe colored instructions sheets and in a language that we can unstestand so that when we are in a little la-la land or tired we can spot them quickly. I've posted this once before but here I go again. I was in rehab for three weeks after radation and every night when they put the Nutrien in my tube and my nurse was out the door I would vomit. I was on 4 anti nausua meds and finally shoved kleenex up my nose and discovered that it was the smell. When I got home I had to sleep setting up and the tube was constantly opening up ruining my couch, rug clothing, and I vaguely remember that when I had to go to the bathroom there was something that I could disconnect and didn't need to drag the pole around. Did anyone tell me that.... NO. My last memory of the tube was that last visit to get a new stem or whatever and the nurse put in on the tube I went to the ladies room to adjust it I didn't have a chance because she never closed it. Good thing I had a jacket to cover the fromt of me. As far as the Shaker which we call it the Sha-Keer I can't do it........it feels like my eyes are popping out of my head but one of the other excercises is to put you tongue between your teeth and swallow three times without stopping, another is what they call the peanut butter sweep ,tongue to the roof of your mouth then bring it to the back of your roof. I'm not good with any of these but they might help someone.
Joan P.
Joan - Thanks for all the details! I look forward to asking some specific questions and passing along some of the ridiculous things that Stephen and I have been through with the tube experience.

Something funny about Dr. Shaker's name - I asked him specifically how to pronounce it, because his staff seemed to have various ways of saying it. He said to think of the Shah as being a man that cares -- shah-care. Most of the staff at the hospital had been saying "Shah-keer," but I notice that some are saying "Shah-care" now!

I'm very glad to be back in touch with the forum.

Susan
Susan & Stephen........I don't know how Stephen can do the Shaker excerises. I give him lots of credit. I have two questions that hopefilly someone can help me with. First after eating lots of times my tongue burns. I've just made a list trying to figure out what food do that but it goes from things with sugar to tuna and mayonaise Unfortunately most of these things used to be my favorites. I was a sugarholic big time and I miss those goodies Any suggestions? Second I would like to make something fairly quick and easily as I do want to make many for Cancer patients to brighten their visits with radation and chemo. When I started my radation I hated the sheet that they covered you with so I made (tied no sewing)fleese blankets sooooooooo many and they went over very well but now I would like to do something different. I don't sew, I glue. Any suggestions? I would appreciate any input. Joan P.
Hi Joan -- see message below in response to your query.

First, some more tips, which I hope will be helpful for some folks reading this:

FOOD TIPS (Using Larger-Circumference PEG Tube)

We have had success blending all sorts of things up (normal food) that goes through the tube (the type with greater circumference, not the narrower one), so Stephen doesn't have to have the formulated liquid nutrition all the time:

~Juice Plus powder supplement, 1 scoop mixed with one cup milk (or even juice, if out of milk) is a good liquid nutrition base. Has less sugar and more natural ingredients than Nutren, Ensure, etc. It is soy protein-based, has 110 calories and 13 grams protein; when mixed with skim milk, 200 calories, 21 grams protein. Best to mix with cow's milk, so as not to overdo the soy per serving.

~Cooked and cubed chicken breast (1/2 or 1 breast per 1 cup liquid nutrition serving), or purchased cold-cuts, thinly sliced, blends well with liquid nutrition. Might need to add extra milk, juice, or water to keep from being too thick.

~Whole grains blend well, such as Cheerios, Shredded Wheat, whole-grain pancakes (can have bananas or blueberries mixed in). About 1/2 cup cereal per 1 cup liquid nutrition serving. I add about 1/4 cup juice or water to keep from being too thick.

~Whole-wheat spaghetti pasta (1/2 cup or so cooked)

~Brown rice (1/2 cup or so cooked

~Fruits (sliced up before blending) such as banana, pineapple, peaches, strawberries. 1/2 cup or along with 1/2 cup cereal or other addition works nicely.

~If food added to liquid nutrition ends up being too chunky no matter how you approach it, look into a better blender. I finally thought to replace our 25-year-old blender with a "cheapee" from the drugstore, just because the steady pitch of the noise it made was driving me crazy! I then realized that our old blender was the problem in our not being able to thoroughly blend anything!


TIPS FOR CONSTIPATION ISSUES
(THE DOWNSIDE OF PAINKILLERS...)

~Used conservatively, prune juice is excellent to relieve constipation when you're on the heavy painkillers, which typically cause constipation problems. (Probably along with stool softeners at first.) Best to start with 1/4 cup or so and increase gradually until right amount is determined.

~Spinach juice can also help with constipation. I believe 100ml serving is recommended. (60 ml spinach juice can be a good amount for maintenance -- I mix it with carrot juice.) Good for you, too.


Dear Joan,

Don't have any good ideas for you re food that doesn't sting, unfortunately.

Stephen's radiation was aimed right at the back of his throat -- base of his tongue, where a microinvasive, submucosal tumor had been -- so swallowing rehab has been going very slowly (his cancer was multi-focal, so it was maximum-strength). He is still not able to swallow anything other than small amounts of water. So, don't have any advice to give about types of food. We're thankful he can speak well and teach and that his energy is gradually returning.

VERY helpful to hear that the tube is a distant memory for you -- Stephen found that encouraging.

Also very inspiring that you are helping cheer cancer patients.

Susan
One thing to add re FOOD TIPS I just noted -- they are for bolus feeding only!

Early on, Stephen got fed up with the gravity-bag tube feeding, so we do bolus feeding (using 60ml syringe).

With the pump feeding or gravity bag, seems like nothing will go through except Nutren, Ensure, etc. (We had difficulty even getting crushed medication through.)

Please don't hesitate to contact me personally at bassoonist_slm@hotmail.com with any questions.

Susan
Hi, I think we can do much better than this.

A tip I learnt here, from the lovely Julia I believe: courgettes. Courgettes are the miracle vegetable. If you are having trouble eating because of dry mouth/swallowing issues, courgettes will really help it go down, whatever it is. OK except chocolate biscuits.

Dunking. Learn to dunk your biscuits. You get really good at timing it so they don't fall into your tea and create biscuit soup. I would recommend Petits Sables if you can get them, Rich Tea may be similar. Avoid digestives or anything that has oatmeal in, too dry.

If you have had a tongue graft, part of your tongue will be numb. This means that you can't find things in your mouth. That may sound weird, but you don't realise how much you use your tongue to feel what's going on and control it all, until you can't. So: be very, very careful to avoid fish bones. If you have one, learn not to panic, not to swallow, and just keep mushing it slowly round in the mouth until it gets to the the bit of your mouth you can control.

Burning mouth: this is set off not only by individual things, but by an accumulation or combination of things. And it continues to improve, albeit slowly. I'm 18 months on from end of my radiotherapy, and I can now manage some small quantity of things that were a complete impossibility at first; even a little paprika, some other spices like cumin. BUT - if you do make a mistake, if it's really burning, eat a bit of bread. Even if you have real saliva issues and normally can't eat bread at all, chew some to counteract the burning. It really helps!

Feeding tube management: if you have a long dangly bit of tube hanging around like I did, don't forget about it when you've just come out of the shower and decide to make the bed. I once almost ripped mine out by doing precisely that, and when I stood up, I had trapped the tube with my knee against the bed. This is INCREDIBLY painful! But most of all, if by chance you did manage to pull your tube out, get to the hospital fast: the hole closes up really quickly, they need to take rapid action. I know, it makes you cringe, doesn't it?

Equally on tubes - try to avoid effervescent medicines. They are really messy to handle, syringing in and then fizzing all over the place.

Don't forget to close the tube after syringing stuff in. Especially hot chocolate. It is really sticky to clean up.

Ice cream! that's the other wonder food!

Be nice to yourself.

I'll see if any more occur to me some time.
Hey, Moptop!

The courgette tip didn't come from me. I had to look up the word; I don't eat much zucchini apart from in quick breads (nom nom).

Oh, yeah. I wholeheartedly agree about the numbness of the graft--especially early on. Even now, I find that Flappy is more sensitive than my native tongue to temperature and pressure. Over time, though, (hopefully) nerves will grow in from your native tongue. For quite a while after I graduated to real food, I avoided using a fork because I was afraid I'd poke my tongue.

Whether you've got a PEG or an NG tube you've got to be careful. The PEG, for the reasons you listed. But the NG tube brings its own set of problems. If the stand isn't tall enough your "food" won't flow properly (I ended up hanging mine from a curtain rod). Also, if the stand isn't high up enough, you could trip on the tube and/or tear out the stitches keeping it in place. We ended up securing my NG to my nose and cheek with pieces of tape. Had to be REALLY careful not to turn my head too fast. Reading all your troubles, moptop, it makes me glad that my doctor opted to go up my nose with a rubber hose.

For me, mashed potatoes and gravy became its own food group. Certainly ate a lot of them for a while.

If someone offers to help, let them. This isn't a time for heroics.
Oh - gosh - nose feeding... I had a nose-tube when I first came out of the op, and I hated it - well, I also had the tracheotomy tube in at the time, and was not very much in contact with reality, but I scared my poor nurse silly by grabbing the nose-tube and pulling - I did NOT like it! - luckily, I didn't manage to pull it so far out that it needed a doctor to put it back, but no... I prefer my dangly-tube version! despite the mess.

Been trying to think of more useful things. Soup, enhanced with melted soft cheese, goat's cheese or cow's cheese. Easy down, and has added protein. I still do that now, whenever I have soup, because I know I don't eat that much protein - meat is dry and hard to chew, and I can still have really strange reactions to fish, I can never predict whether the smell is just going to turn me right off.

But, on meat: carpaccio, great way to eat it. Stewed lamb, or any really tender lamb - expensive, but I only eat it in small quantities so hey - don't over-cook meat if you are frying or roasting it, it goes harder. Keep it juicy; basically, the rawer the better, is good for beef, lamb, duck; also salmon and tuna.

Still don't know who the courgette lady was, but I think she is a northern (english) lass - I reckon it was also she who recommended gravy. Yes - lots of juice, and not necessarily thickened. And don't be fooled by potoes: they are actually pretty hard to eat, they soak your saliva up. So, good in stews, if you mash them in; good in mixed purees (carrot and potato etc.).

Fizzy water is generally good, although I think that is very personal, and there are times when it is actually painful as a combination-item.
Some tips about your relationships with doctors:

1. Don´t mind if your surgeon does not seem "sympathetic" on your first visit. Surgeons, in general, are NOT sympathetic nor particularly sensitive. But do check their professional reputation.
2. Avoid going to the doctor alone. Emotions may lead you to forget to ask him or her the appropriate questions. A third person´s eyes and ears may be extremely useful
3. Write a list of the questions you may want o ask, and write down the doctor´s answers

Have a merry Christmas, a merry Chanukah, and a happy new year!
Hola Shoshona

I guess I was one of the lucky ones--my parents and I were comfortable with my doctor from the outset. It really helped that he was (and is) at the best teaching hospital in Michigan.

You are spot on about not going alone, especially to those terrible first visits (the ones with all the testing and such). Grief shared is grief halved; joy shared is joy doubled.

I'd suggest not just writing a list, but getting a dedicated notebook for it. Include the dates.

I'd like to add:
4. Don't miss or reschedule appointments unless ABSOLUTELY necessary.

5. Follow your doctor's orders! They're not suggestions, and you'd only be hurting yourself. I've actually heard at least one of the doctors where I go tell a patient "if you don't care, why should we?"

All the best!
Julia
Hi, Julia,
Keeping a diary is a brilliant idea! You can write notes about your medical appointments, tests results, treatments, and medicines, but also about how you feel about it all.
Exteriorizing your feelings by writing them helps you to cope with the anguish and frequent anger... At least, it has helped me.
When I went to the clinic for my partial glossectomy, I carried in my brief luggage a note book and 12 pens in different colours.
Have a happy Christmas!

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