So afraid.

MaryRC said:

wont stop
I wont stop posting, this is what got me through my ENT appt last week. I have always been a whiner when I dont feel good. My husband says he is use to it and when I am laying down quiet is when he worries. I was upset when my doctor said it wouldnt be until March 29th for my surgery. I was ready to go in and get it done!
Now one part of me is saying I should take this time until surgery to stay home and get rest ( I never take time off in 15 yrs) or go back to work till then. I am already on SDI and so unless I cancel it, I cant work. Then if I cancel then have to reapply. My work is heavy with my boy patient,lots of lifting and I get hurt ( kicked, and head butted).
I think I have excepted the fact that I have cancer. I just want it to be gone. I am ready for all to come. But I will whine :)My husband took care of me after my shoulder surgery, and boy was I ill from the anesthtic! Shoulder never did hurt. My husband told me to stay as long as I can this time in the hospital.
Thankyou all for being so kind to me. I wish none of this has happened to any of us, but it has and I have to be strong like all of you .
Steve and Mick, I hope your treatments are going well for you. I think about you all.
Mary ( the whiner in Northern California

That's the way!
Great post (10 times!). It is good you are staying and taking us with you on your journey.

Best,

Mick

stevenl said:

10 times
Hi Mary,

Yea you said you would keep posting and you are having great success!LOL
It's all right, I did the same thing 4 times. When the site is crawling you just
keep pushing the post comment button and it doesn't forget how many times you push it.

Hang In There,
Steve

geepers i missed a lot
this site is at a crawl all the time anyway, and with my stupid dsl problems I am having trouble bringing up any lengthy threads, so i missed this post earlier.

mary, i must be a big baby whiner too, because i don't think you are whining and for someone to say that to you really, reaallly pisses me off. the little new yawk city girl is coming out of rural pa. you can take the girl out of new yawk, but not the new yawka out of the girl. GRRRR. okay, now that I am over my fit....

I am glad you will continue to post because i think it will be good for you through treatment and after. i am not a big touchy feely kind of girl and people have been telling me for a while to join a cancer suvivor group some where, but i am sort of not good with sharing my feelings in front of people. this space has provided me an outlet without invading my "personal space" so to speak.

you are scared and rightly so. i think you have come so far from the first day you posted here. you will continue to have bad and good days, but you will be prepared thanks to all the info here. I know you want that thing out of you. i wanted my surgery done and over with. i know the day they were going to do all the scopes and stuff to look for my primary, i was really wanting them to get that lump out. they would not till they tried to find the primary. after the scopes, they found nothing and decided to just keep me overnight and do the dissection the next day. i was relived. especially because it was getting bigger by the moment and my neck was really hurting.

as far as going back to work, just concintrate on building up your strength, maybe gain a couple of pounds if you can, and work on building up your immune system. you want to be prepared for the battle of your life. i was a serious work a holic and i went for a couple of months (3 actually) between surgery and radiation, more time than what they wanted, really. but i got 3 opinions total. needed a tie breaker as it was one vote radiation/chemo to one vote do nothing. in the mean time i tried to gain weight, not easy when you want to, juice daily with plenty of fruits and veggies, and take an immune booster. (3 opinions were geisinger, danville pa- cancer treatment center of america, philadelphia pa- and cornell university. also had a consult with a doc from sloan kettering and my dr contact at rockerfeller university, about the fanconis anemia coming into play with this mess). so think about using your time now to invest in YOU. don't worry about your patients, they will have good care by others.

you will get through this. we are here for you. ignore the people who say stupid things to you. i do. they just haven't got a clue of what you are going through, and also, some people cannot relate to people with cancer. it scares them. it makes them confront their own mortality.

hoping i can get this posted. imo, i think we should start a new thread for you. i hate my dsl.

stevenl said:

Surgery
Hi Mary,

I have had, all in all, very good experiences with my medical team. Sometime Joe ain't talkin to Jack, and things get a little out of order. But one thing with me is, I almost wanted to tell em to slow down. Everything has been thrown at me so fast it's been hard to endure at times. As a matter of fact I am now the proud renter, yes renter, of a walk med chemo pump, which is hooked to me now, and it really is no big deal. I had my 1st chemo today-supposed to be yesterday-another story- and it was no big deal. Also had my 1st Amofostine I V and 1st radiation, also no big deal. My tumor was visibly growing at an alarming rate, thus the need for the rush, I think. Met a guy in chemo today same diagnosis as me and he is not even having surgery yet. Chemo and rads 1st,to get rid of the C, then possibly surgery to remove his right tonsil. Every body is different. But Mary, I understood you to say you got a call from your Ent nurse about your surgery date. If that is not want you want to hear, call in the morning, and make an appointment to see the DOCTOR. Do not take no for an answer. Insist, and try to be nice, but get satisfaction. If you do not understand why make them tell you why. I asked for a one on one with my ent and got to see him the day before surgery. I had only talked to him for 10 to 15 minutes in 2 visits combined and to be frank, I did not know what was about to happen to me . The why, what how and such. Be strong and make them help you understand.

My thoughts and prayers are with you Mary,
Steve

Amifostine
How are you tolerating the amifostine?
I just finished up a four week course of it on Wednesday.
Had to cut it back to 400mg from 500 mg (I am 4"11, 100lbs and thought I could tolerate a lower dose better, which did turn out to be the case...
Good luck with your treatment.
Stacey

MaryRC said:

wont stop
I wont stop posting, this is what got me through my ENT appt last week. I have always been a whiner when I dont feel good. My husband says he is use to it and when I am laying down quiet is when he worries. I was upset when my doctor said it wouldnt be until March 29th for my surgery. I was ready to go in and get it done!
Now one part of me is saying I should take this time until surgery to stay home and get rest ( I never take time off in 15 yrs) or go back to work till then. I am already on SDI and so unless I cancel it, I cant work. Then if I cancel then have to reapply. My work is heavy with my boy patient,lots of lifting and I get hurt ( kicked, and head butted).
I think I have excepted the fact that I have cancer. I just want it to be gone. I am ready for all to come. But I will whine :)My husband took care of me after my shoulder surgery, and boy was I ill from the anesthtic! Shoulder never did hurt. My husband told me to stay as long as I can this time in the hospital.
Thankyou all for being so kind to me. I wish none of this has happened to any of us, but it has and I have to be strong like all of you .
Steve and Mick, I hope your treatments are going well for you. I think about you all.
Mary ( the whiner in Northern California

Nasopharynx cancer
Looks like I have this rare cancer. Had the PET scan and one node in the neck and the nasal area lit up. I will be having a biopsy on the node to see what type of cells are there. Why could I not be one of the rare one’s to win the lottery instead of this crap. I will go into a bit more about my story as soon as I make sure I’m doing this computer thing correctly. Here’s a prayer to all of us having the strength to get thru. thanks

Hondo said:

Mary
We all double post at times, just glad to have you here

A Second To That
I second Hondo's post, Mary. I hope, now, that you do believe that. You're gonna be okay.

Believe.

kcass

Coupe35 said:

Nasopharynx cancer
Looks like I have this rare cancer. Had the PET scan and one node in the neck and the nasal area lit up. I will be having a biopsy on the node to see what type of cells are there. Why could I not be one of the rare one’s to win the lottery instead of this crap. I will go into a bit more about my story as soon as I make sure I’m doing this computer thing correctly. Here’s a prayer to all of us having the strength to get thru. thanks

NPC
There's a seperate thread in this head and neck community for NPC, Coupe35, which is what Nasopharynx/Nasopharyngeal is known by, here. Hondo started it. Hope you will add to it. How did you become aware of your C? Reckon you must have had a surgical biopsy and analysis. We, with NPC history, will greatly welcome your info. Couple others are currently very active, here, and going thru NPC treatment. I'm a 15+-month Survivor. Hondo is some 7 years, and Hawvet even more. We are proof you will survive this setback.

Two different treatments are the standard: Cisplatin and Flourouracil, with 35 rads. The regime of the Chemo can differ, and I would be most appreciative of the specifics of your's, when your Drs. determine your path. Mine was a bit different, and so it is of a very special interest to me.

Welcome.

kcass

Kent Cass said:

A Second To That
I second Hondo's post, Mary. I hope, now, that you do believe that. You're gonna be okay.

Believe.

kcass

Sweetblood wrote ...
"i am not a big touchy feely kind of girl and people have been telling me for a while to join a cancer suvivor group some where, but i am sort of not good with sharing my feelings in front of people."
I was exactly the same way. Having been a reporter for 30-some years, I've seen it all: witnessed executions, covered murders, interviewed child-rapists, watched the cops pull dead bodies from the Delaware Bay, the whole nine yards. I'm tough as nails, simply because you have to be tough in my business or you won't last.
I was the same way about my personal life, tough as nails -- until cancer came along. Before cancer I never would have considered getting on a board and posting things about myself. Now it's actually a great joy, particularly if I occasionally can pass on some tidbit that helps someone else through this experience.
So, MaryRC, don't worry about being a whiner. There's no more life-changing experience than cancer -- and it may not look like it now, but some of the changes can be wonderful.

--Jim in Delaware