help, please:

I am very new to this. am just starting treatments in a few days. I don't know exactly how to access the advice of all of you who have already experienced radiation and chemo.

please let me know how to go about discussing all of this with you all, and my loved ones.

feel pretty well now, trying to do the swallowing exercises, (they are not easy (!) but I don't want to have a feeding tube.)

also, something I have not seen on this site, maybe I have missed it: I chose not to tell my family and friends and co-workers until I am too ill to avoid it. So far , I feel relatively well. I begin my treatments in 3 days. I have a sister who is not well (strokes) so I don't want to worry her. Plus I don't want anybody to treat me differently until I really need their help.

How have you all handled this aspect?

also, how do I know if you reply without searching this site?

thank you so much,
Berry

This message has been edited. Last edited by: Dr Vinod K Joshi,

Hi Berry

Even though you haven't told anyone about your cancer diagnosis, your friends, family and co-workers have most likely noticed that there's something "different" but can't quite put their fingers on it. My co-workers figured it out when I pretty much stopped talking unless I absolutely had to--just a few days after I'd been disciplined for talking too much--because my tongue hurt soo much. For my family, the hint was Thanksgiving dinner. (When your daughter who weighs "three spins" isn't eating one of her favorite meals--one that she LOVES to make--there's something wrong.) Like I said, I'm a bit of a blatherskite, so my nearest and dearest have been informed (whether they wanted to know or not) since my first doctor visit.

In my case, an ng tube came standard with the 2005 Hemiglossectomy. But then, when your tongue's just been rebuilt and it's full of sutures, food's not a good idea.

At the risk of being impolite, what kind of cancer are you fighting? What stage? What location? This will actually help the folks on this site answer your questions. No two of us has had exactly the same experience or treatment, but there could be someone here who's been through similar. For me, it was stage 2 tongue cancer, and the hospital where I was treated relies on surgery for that. So far, so good.

You're not alone in this. Please let us know how you get on.

Julia

I agree with Julia - please tell us the exact type and stage - that will help us try to help you. My father had stage IV base of the tongue and it is now in remession. He was able to get along with out a tube but was VERY serious about his nutrition and hydration even when water was like shards of glass. I think you xan set it up so you get an email when someone responds to your post or sends you a pm.

You two are so nice. thank you.

I got your messages on my e-mail, so hopefully I have that covered.

Julia - I really like your up-beat attitude, despite what you have been through.

I "just" have squamous cel carcinoma on my epiglottis. Stage one. I am glad that it didn't happen ten years ago, when surgery was the first option.

It pisses me off that doctors would not believe me the last few years, when I told them that something was wrong, but I am trying to put that under the bridge and just deal with what's happening now.

"Blatherskite" is my new favorite word. It's replacing "huggermugger". You are amazing.

They have me scheduled for Erbitux this Monday, and radiation the next Monday.

and you are correct about people noticing that things are not quite right. I broke down and told one of my employees about it this week, because he wondered why I was having him do jobs that I would normally do myself. Tomorrow my family is having a Mother's Day celebration at our cabin at the lake. My brother and nephew are fixing dinner for all of us Moms. I am thinking about telling them then. But I still don't want my sister to know, as she is a major worryer, and not that healthy.

I just don't want people to treat me differently.

and, I am scared about the side effects.


thanks again and take care,
Berry

Hi Berry

I didn't have rt or chemo, so I can't tell you what to expect.

A day at a cabin by the lake? Sounds wonderful--hope you have a good time.

You might not have to start the conversation, but there will probably be questions--especially if your tumor has made eating painful or difficult and you've lost weight. If anyone asks, be honest without being blunt and give answers that they can handle.

Julia

I hope you had a wonderful day at the cabin!! My father had both chemo and RT - how many rounds are you set up for? It's hard not to be scared but best if you can channel your energy into healing thoughts. So glad you found this site - it was critical in me helping my father!! So many good folk gave me such great advice!! Sucks you have cancer BUT Fortunately it is stage one -eventhough those doctors did not listen to you - YOU listened to your body - keep it up!! stened to your I am going to pm you some info that I found very helpful and I hope you can use some of it to help you M

hi berry i had chemo and rt also had peg tube fitted and in my case i needed family to know what i was going through. i stayed in hospital for treatment .finished treatment dec 2008 and had to rely totaly on peg for food and drink even meds had to go through peg. but after some time i began to get better now i forget that i had cancer i use every chance i get to talk about it and for me this works, i dont go into too much detail;just basics mostly the mental side of it . i am confident things will go well for you,you may now find an even stronger bond with your sister. james.

quote:

Originally posted by HelpingDad:
I hope you had a wonderful day at the cabin!! My father had both chemo and RT - how many rounds are you set up for? It's hard not to be scared but best if you can channel your energy into healing thoughts. So glad you found this site - it was critical in me helping my father!! So many good folk gave me such great advice!! Sucks you have cancer BUT Fortunately it is stage one -eventhough those doctors did not listen to you - YOU listened to your body - keep it up!! stened to your I am going to pm you some info that I found very helpful and I hope you can use some of it to help you M

Thank you so much. I am glad I found this site. I live in a relatively small town, so it's good to get imput from a larger community.

I had a GREAT day at the cabin. Even fished some from the dock, but, alas, no fish were biting. They made great food, and since I can still swallow pretty well I ate a lot. Been eating all of my fav foods in anticipation of soups and Boost in a few weeks.
Had my first chemo yesterday, and feel great today. Just taking it a day at a time.

thank you!

quote:

Originally posted by jimmy b:
hi berry i had chemo and rt also had peg tube fitted and in my case i needed family to know what i was going through. i stayed in hospital for treatment .finished treatment dec 2008 and had to rely totaly on peg for food and drink even meds had to go through peg. but after some time i began to get better now i forget that i had cancer i use every chance i get to talk about it and for me this works, i dont go into too much detail;just basics mostly the mental side of it . i am confident things will go well for you,you may now find an even stronger bond with your sister. james.

Thanks, James!

quote:

Originally posted by Berry:

quote:

Originally posted by jimmy b:
hi berry i had chemo and rt also had peg tube fitted and in my case i needed family to know what i was going through. i stayed in hospital for treatment .finished treatment dec 2008 and had to rely totaly on peg for food and drink even meds had to go through peg. but after some time i began to get better now i forget that i had cancer i use every chance i get to talk about it and for me this works, i dont go into too much detail;just basics mostly the mental side of it . i am confident things will go well for you,you may now find an even stronger bond with your sister. james.

Thanks, James!

Hello, all. thought I'd post an update, mainly 'cause you are so empathetic, sympathetic, and sweet. Hope you are enjoying springtime!

I have had a rotten cold for the last few days. Fever too. Bummer, as our weather is finally nice enough to work in the garden, so I just look out at the weeds around my peonies and sigh. Finally time to plant all of my seeds also! We have had snow and below-season temps until this weekend. Sometimes our weather goes from Winter to Summer overnight!
(Springtime in the Rockies.)

Tomorrow I am scheduled for my 2nd chemo and the first of the rads. Before the radiation there is an "informational meeting". I don't know what that entails, but I am ready to get this going and over with, even though it's still scary. I have visions of cancer cells multiplying and can't wait to zap them.

So far I have had minor complications from the chemo. Just a few zits and slight rash. Plus itchiness everywhere, particularly around my eyes. Very minor. Nothing to complain about.

So, tomorrow begins the process. 8 more chemo treatments, and 39 radiation treatments (Mon-Fri)

The radiologist says that I probably won't be able to work in 3-4 weeks. I worry about that a lot.

I thought I would start a journal, and am normally a prolific writer, but my journal is pitiful so far.

Thanks, for letting me ramble. I really do appreciate your shoulders. My sister is planning a visit here in June. YIKES.

Berry

P.S. James:

My sister and I grow closer every year. But she is 8 years older, and such a Mother Hen. I really like her more each year. BUT, it would drive me crazy to have her hovering over me for more than a day or two.

More importantly, she has has strokes in the last few years, so she does not need the added worry.

thanks,
Berry

Hi Berry. I had surgery and RT and coped with it really well but couldn't have done it without my wife. The rest of my family were pretty (read very) useless though. Hagg.

Berry,

I can say that the radiation to the mouth is a bitch! Sorry for the foul language.

The first two weeks should be ok. But when the blisters start that is it. I didn't get a feeding tube either. Warning is to stock up on drinks like boost and ensure. My local grocer has generic brands which are cheaper but similar. Walmart has their own brand as well chocalate strawberry and banana. They aren't the best but help with not eating and getting some nutrients that you need in. I am doing cisplatin and 5fu chemo currently I live in Kentucky! My dr won't give me Erbitux because of the rash! He says I am too young to do that too! But I am stage 4! I also start radiation to my left hip tomorrow I am not concerned with it because I have done it to the mouth if you can live thru that the hip would be nothing. I am only doing 10 treatments of that, I did 32 to my mouth and it took care of all of it and the surgery! My chemo causes blisters so I know what you will go thru but mine only lasts couple days this time. I used baby orajel before bed to put my mouth at ease and they gave me this stuff caused magic mouth wash to swish and swallow before eating but it only lasts bout 10 minutes. It helped to get pudding and jello down!.

Best of luck to you!

Pam

thank you, Pam. and don't worry about foul language. Sometimes it is appropriate!

Wow, you are going through such a crappy experience. But I do thank you for the advice and hints.

So far I've just had two Erbitux treatments and one week of rads. So the side effects haven't started too badly yet. 35 more rads, 7 more Erbs.

- I think the rash from the Erbitux, no matter how bad it gets, has got to be better than the side effects of some other chemo drugs. So far I am hopeful, as the statistics for Erbitux are pretty good for this cancer. It's on my epiglotis and surrounding lymph nodes, so they are calling it tongue cancer. Swallowing is still not too difficult or painful, so I have been bulking up even though I don't really feel like eating, in anticipation of this great weight-loss plan.

The first time I had the radiation treatment, after they bolted my mask down to the table, I kept thinking about fava beans and a nice chianti.

Please keep me updated and feel free to vent if you'd like. Sounds like my situation is a cakewalk compared to yours.

The worst part for me right now is just anticipation of what's to come, and not being sure how long I will be able to work, and wishing I didn't HAVE to work.

Too bad there's not some kind of nice spa we could go to for the treatments where we could be pampered and slathered with salves and not worry about money and just concetrate on getting well.

thanks again, take care.

Berry

Berry,

I took medical leave during my treatment last year. So I was paid 100 percent and then dropped to 60. But I went back in April so I was off for a little over 4 months with surgery and radiation and 4 weeks of recoup. I have been off since November this time. I am on long term disability from work just got my final paycheck and was approved for disability benefits thru social security starting in end of June. Didn't plan on being disabled at 32 but got to distress my life and do what is best for me and my family.

I thought I was done with all this last year I was back to work doing good keeping my wieght were it was then I got the news of my lungs in November after weeks of tests and a lung biopsy. Then April was a kick in the teeth after four chemo rounds and to be told there is now another in my hip about fell over. It killed me to look at my husband in the dr's office we both just starred at each other in shock. Then my brother was hard to tell he gets real upset and he knows how hard I am fighting he is more of a dad than a brother he is 13 years older than me. I don't have my mom to help me thru this and when I do tell my dad he is lost. He asked the ent when I was originally diagnosed if my tongue would grow back! I just sat there and starred at him like what did you say?

My oldest knows I am sick it has affected him some in school. But recently I told him it helps me more if he can behave then I don't worry and I can focus on getting better for him. My youngest just knows the word cancer. He walks around saying cancer and boo where my port is and dr . He is a smart cookie though. He knows when I don't feel well.

Do try those drinks I said from Walmart if there is one near you. They help me out. Especially now with this new chemo all the blisters I can still drink which is similar to the radiation. I did eat alot of fish when I had radiation because it was soft to chew. Lots of soup too. Best of luck to you I know how the radiation feels my radiologists were so sweet. I used aquaphor after my treatments and at night I didn't blister on my skin at all. My neck did peel a little by my neck dissection scar but that is all.

Best of luck if you come up with more questions just ask.

Pam