New here...hi everybody

phrannie51 said:

The moment I wake up
cancer is the first thing I think about...trying to mentally mesh "me and cancer" which so far, just doesn't want to go together. I know it, but can't "feel" it...I suppose that is par for the course, since I'm still less than 48 hours with the knowing part. I come to this board and feel the warmth...it's like a soft place to land for a while...thank you all for that!

So....icecream and cheesecake can work along with muscle builders drinks, I can pack on some pounds with those...mmmmm, two of my favorite indulgences.

p

Taste.
Used to like them, now I have no taste what so ever, I'm still eating but it's not
The same. By the way Phrannie I was told by an ENT on Nov 18 2011 I had cancer and I couldn't
Get in to the University of Miami H&N until December 3rd then biopsy on the 8th, then
My Dr went on vacation for Christmas and New Year. So when I chose just radiation I
Had to get my teeth sorted out first so I didn't start treatment until March 1st...Three and a
Half months since first being told, talk about scarey. But now everything is underway
the people (friends) on this board helped a great deal ,you will be ok.

God Bless.
Tonsil Dad

Dan.

Welcome
as you can tell there is alot of experience and support with this family. Welcome

good luck with the scans and keep us posted with your plans for treat.

john

Give it to God and you will be ok!

You have your pet for all that unconditional support!

longtermsurvivor said:

actually you can
there are no rules on this, so whatever it takes is fine. Think calories first, protein second, everthing else, let someone else eat. I had dropped a bunch of weight right before my diagnosis and treatment this time. I couldn't swallow, and weight was dropping likke a stone. When they started chemo, right away I found I could swallow better, so I began to power down the calories, in advance of radiation. Knowing I just needed calories above all else, I made basic cheesecakes, and ate the devil out of them. Some days i ate an entire cheesecake. As soon as I'd finish one, I'd make another.

when I had chemo related nausea, i slacked off. But the moment thenausea was gone, it was back to the cheesecake. I gained over 2o lbs during chemotherapy, and didn't need a PEG during rads. I'm done with rads now, and I weigh more than I did before the process started.

Pat

Who Cut the CheeseCake
D.A.N.G... I knew I liked you for a reason.

Cheesecake is my absolute favorite....

JG

Ingrid K said:

WELCOME
Welcome to this forum. This is the best place to get any info, etc. so you already have given yourself good advice: Don't go on the web to read up on things... it can drive you crazy. The folks on here have been thru everything related to this sucky cancer and are still coming back on here giving advice to those of us who are still on the early parts of the journey. You will get to know the most wonderful people on here and they will help you to get thru this. I wish you well and send you cyber-hugs.... (love the GSD. Ours was named Heidi... we now have a 5 yro golden named Barney, who was/is a big part of my recovery)

starting
Phrannie-sorry that you find yourself here among us, but you are most welcome to be here.

Where you're now at, with so much being unknown, can be very stressful. I hope you will try to realize that you'll make it thru this thing okay, as we all have, and that it will not be nearly as difficult as you might imagine...

Worst of times for me was exactly where you are at- weeks before the PS/CT, and I was weighing all the possibles. Worst of times, Phrannie- even worse than the accelerated chemo/rad regiment they put me thru! And it was all so needless for me to have been so anxious back then. This is 2012- not 1995- and the H&N C med community has made great strides forward in dealing with all the Cs that can hit us. We generally fall into the 90-95% survival group, but that's only the 5-year stat-wise data for the med community over the past how-many years to work from. You will survive this, phrannie, as we all do, for many years to come. The Drs will help to minimize the pain involved- to make it only a matter of discomfort. You're just going on a short drive down a bit of rough road, along with your husband and those who care about you. Will not be anywhere near as difficult as you might possibly imagine it will be...

I got my 3-year PS/CT coming-up in early-April, phrannie- that's 3-years since my last rad. It was just a bit of rough road I travelled down a few years ago, in the vicinity of where you're about to go for a ride on. You'll be fine-

Believe

kcass

Skiffin16 said:

Food Channel...
Dan, you're not truley suffering yet until you start recording TV programs on the food channels just waiting for your taste and saliva to come back, sitting there drooling imaginary slobbers....LOL.

Just ask me (and others here), how I know these things...LOL

JG

you said a mouthful
My poor wife feels so guilty. When she cooks now, its for herself,, since I am still on liquids. The food smells so good, though, that I follow around in the kitchen, smelling everything. It smells so good. She gets all apologetic:)

phrannie51 said:

Kent if you were here in this room
I'd hug you!! The reality of this must be setting in...tonight I went beyond anxious and into stone cold fear. Your post was like putting on a warm blanket after being out in the cold for hours....THANK YOU! I've spent hours on this forum reading...and suddenly felt SO overwhelmed...caught up in the demon "what if's"...The killer "what if" was...what if my husband can't take the new me. I was picturing myself all burned and sick...with tubes for food...ropey snot...no teeth and no hair...and unable to care for self...for months. That scared me more than anything...now I feel kinda silly getting scared of that. It's going to be temporary, and it's not like Greg and I just met...like you said, a short drive on a rough road. I can handle that.

Your words came at a perfect time for me tonight...the demons have been put to bed, and I can now do the same.

p

I'd hug Kent if I could, too.
Phrannie - I assert that Kent is one of the most supportive and reassuring people here. Ever since he first told me to 'believe', I've been believing. Also - I'll be two years out from end of treatment in late May. I never lost my hair, I haven't lost a single tooth, and my husband is still putting up with me. I did have a feeding tube for a short while, but hubby couldn't see it under my shirt, and now it's gone. You can do this! It's a very dark place, but it's only a tunnel. There is a light at the other end.

Deb

phrannie51 said:

Stacey...we ARE neighbors!!
I live in Kalispell. I would so appreciate talking to you...You're right, there isn't any choice in who to go for this type of care here, tho I think they are good Dr.'s...(they did my mom's laryngetomy, and she had much less trouble than others in her laryngetomy group...which was only about 5 other people).

Congrats on being two years out of treament...a REAL anniversay!!

How do we go about exchanging phone numbers and/or email addy's? It's so comforting knowing there is someone close...real life....close by.

Deb...thank you for the buck up. My husband is being a rock for me right now...I get to projecting into the future, even tho I KNOW it's disasterous for me emotionally (when will I learn to stop that!!!)...but I can feel that you understood where I was coming from...and being understood is is another warm blanket.

p

I agree, I love this group,
I agree, I love this group, but it is always nice to be able to meet.
There are 5 of us (including you now) that I know of in the valley with head and neck cancer. Call me..212-5730, leave me a message with your phone number and we can talk.
I mention leave a message on the cell, because I live in Happy Valley where half of my cell phone calls get lost.
Really look forward to talking to you.
Stacey

phrannie51 said:

Stacey...I put your number into my cell phone...
so I can give you a call. I'm getting ready to go to work right now (I work at Flathead Electric)...but once there, if it's quiet, I can leave you a message. I know Happy Valley's reception is spotty...not quite as bad as west of town...but when I have crews working in Happy Valley, communication can be difficult.

Thank you....I'm SO SO glad you're here.

p

Phrannie and Deb
You two made my day with your comments. Really did. Thank you. And Deb- as always.

What I wrote was true, Phrannie. Seemed like everything turned-out to be better than I had anticipated it would be. When I was in your unknown vicinity I had made the Google mistake- do not go onto Google, as that's extreme ancient history cases that have no bearing on you, or any of us. There's no Google pictures of the vast majority of us, because what's to be seen with only a small neck scar from a biopsy- a scar that might not even show in a picture? This is 2012. I returned to work a month after my last rad, and am still working at the same place almost 3-years later. Yep- I look back now and think of how wrong I was to have all that negativity, which included thoughts of giving up and not even going thru treatment! What a fool I would have been- the present and past 3+-years are factual proof of that.

I did forget to tell you one thing, though, Phrannie, which I have mentioned to others from time to time: "You're gonna survive this thing- so get used to it!"

Believe

kcass

phrannie51 said:

I'm staying here on this site....
and keeping away from doing research anywhere other than the SUPERTHREAD. My mind doesn't need the negative fodder of what I refer to as "dry sites"...the ones with all facts and no emotions, no feeling.

I've spent the last three hours on the SUPERTHREAD...I've got to figure out a way to gain weight...I need fattening healthy foods (darn, wish I could just polish off a 1/2 gallon of icecream a day )...how to gain twenty pounds in a short time, is baffling me. I'm thinking maybe high calorie, high protein powder, like muscle builders use?

I'm starting to think of questions, now...must be coming out of the protective fog of the last 24 hours.

Again....gawd, I am SO SO glad I found this forum...I hope I find my well of strength...I must have one, too...right?

p

Phrannie
Sheesh, I'm really not a total wrathful lunatic. *sigh* Anyway, welcome to the club that no one wants to belong to. Glad that you are finding the Superthread useful, I thought it would male life easier if I compiled all the important stuff in one spot. Lol.

I wouldn't worry about "healthy" fattening foods as much. I was told by my drs that they wanted me to gain as much weight as I could before I went in, because I am petite. I was told by my nutritionist the same thing. I only managed to gain about five pounds or so. You can use protein powder and that kind of thing. When I was trying to gain my weight back, (i was down to 87 pounds) I did not drink or eat anything without calories. Period. I drank coconut water for hydration. I did flush my peg with water, so I was getting that too. Smoothies were drunk while I was eating for extra nutrition and calories. I added things to my smoothies like almond butter, flax seed oil, and avocado for more calories and good nutrition, too. You can always private message me, and I will give you ideas for food, if you like. There are also many food/eating/nutrition info on the Superthread. I had a nutritionist on my team, and I think that should be standard for all HNC patients. Obviously, I am not a nutritionist, but I know a lot about food, and cooking.