Posted By: Joylight I feel like such a weenie - 05-14-2007 10:24 PM
I'm Susan, and I have only known I've had cancer for about a month. I am not sure why I was so surprised... to say the rate of cancer in my family is high is an understatement. Lost my dad, his three brothers, and my mom's two brothers and her sister to the disease. Oh, and a cousin.

I had a tonsil removed March 30 and the biopsy came back as Nasopharyngeal carcinoma, epithelioma-like carcinoma. After a whirlwind of doctor appointments, I'm now in radiation treatments.

Today was my 10th treatment out of 35 (no chemo, thank god!). While I can handle the pain of where I am today, it frightens me to think how much worse this is going to feel 25 treatments from now. I am not sure I have the stamina to take this.

My eating habits are all upended, as daily things are dropping off my menu. I feel like someone has stripped the lining in my throat with industrial-strength solvent. And I'm not even a third of the way into this.

I'm trying really hard to keep working through treatments; fortunately the cancer center in our town is only a mile and a half from my workplace, so I've been using my lunch hours to get my treatments. I've only worked at this place of employment since last September, and have virtually no accrued vacation or sickleave time to speak of.

It almost frightens me to read the other posts on this forum because I realize how much worse it can get. I feel like such a weenie because in comparison, I'm probably going through a pretty mild bout of this nasty stuff. But I'll buck up and keep plodding through this, one foot in front of the other. Someone I know is fond of saying, "Walk to the edge of the light that you see," because once you get to the edge, you'll be able to see just a little further and will be able to keep on walking.

Is there any artificial throat slime I can take to make my throat feel not so violated? That's the hardest part; even though the radiation is targeting a tumor which is between my nose and my mouth, the residual damage being done to my throat is the most painful.

Well, now that my whining is done, I hope I can contribute in some way. (Sneezing... now THAT is a new adventure worthy of the Marquise de Sade.)

Thanks in advance for all the support. I am learning now what questions to be asking my doctor. Trouble with being new to something like this is that you don't know what you don't know.

Blessings,
Susan (Joylight)
Posted By: sharlee Re: I feel like such a weenie - 05-15-2007 12:07 AM
Susan

Dont ever aplogize for whining , or for feeling that what you are going through is any less then what the rest of us had or have. We all have diiferent Diag & Tx and we all handle things differently and we all have different personal issues and so on and so forth. SO none of us are any better of then any other. We all have the disease and we all want to beat it ! That is what we have in common...And you have come to the right place for information and support ! I am not personally aware of the effects of Rad, as I didn't have it , But you can find lots of information here, I can say as I understand it ..it does get worse before it gets better ...But in the end it will all be worth it . I have to say that it is nice that you are so close to a cancer center ,,,that is a def plus. But mainly you are right one foot in front of the other and ONE DAY AT A TIME AND SOMEDAYS ONE MOMENT AT A TIME ! And knowledge is power ...the more you know the better of you are . SO best wishes to you and may you keep finding the strength you need to get through this !


SHAR
Posted By: Cookey Re: I feel like such a weenie - 05-15-2007 08:45 AM
Susan ,i echo what Shar says .Dont EVER be afraid to have a moan.what you are having done is is torturous and i applaud the fact that you are still working after 10 treatments.Please speak to your Oncologist and i am sure they will do all they can to help with the throat even if it is only pain medication .Robins Oncologist admitted it was all they could do to try and keep him pain free.Dont suffer in silence ..Remember its the squeeky wheel that gets oiled first.!!!
Posted By: davidcpa Re: I feel like such a weenie - 05-15-2007 09:46 AM
Susan,

We all went through the ordeal and we all whinned at times. It's good to get it out and it's good to have a receptive ear so whine away.

As far as the artificial slime, the only thing I found to ease the torture was different "mouth washes", like Biotene, Oasis (both are available OTC from drug chains) and Miracle Mouthwash which is something you need a prescript for and your local pharmacy makes up. I will tell you that nothing really gets you back anywhere close to what normal used to be so don't expect that and just hope that one or all helps.

What we go through from the 3rd week of tx to the 3rd week post Tx is probably the most intense discomfort period in ours lives but it is only 6 weeks and you do survive and you do walk or crawl out of that dark tunnel and you do feel almost normal again. I am coming up on 9 months post Tx and it gets more difficult to remember details of torture so that's agood thing.

Remember to help yourself by drinking at least 48ozs of water and consume at least 2000 cals of food each and every day and don't think that if you fall short today you will make it up tomorrow because tomorrow never comes. Force yourself to meet those goals every day.

Oh, and yes, you are a weenie. I should know because I was one too or at least I felt like one.
Posted By: mommapez Re: I feel like such a weenie - 05-15-2007 09:52 AM
Just a suggestion my husband is taking Codeine for the pain (side effects include constipation) and MUCOSITIS mouthwash which freezes the mouth and is swallowed and freezes the throat and a stool softener for the codeine. This Mucositis is a blessing as it freezes everything a can be swallowed. Prescription reads 15 Ml every 4 Hours when needed. There is also a rinse that he was using which is water and baking soda before and after meals. Baking soda can also be used a teeth cleaner. Hope it helps..
Posted By: Shelley K Re: I feel like such a weenie - 05-15-2007 01:32 PM
Hi Susan,

My husband is 2 1/2 years post treatment, but I can remember it vividly. He only had radiation too and I'm not going to kid you, it's tough. But you CAN do it. What we learned the hard way was to keep consistant on the pain meds. Set your alarm, whatever you have to do, but don't let the pain meds wear off.

My husband has a very physical job and he was able to work for about 5 weeks into the treatment and then he had to take a break. It was just too much. But then again, others here have been able to continue working. I think it depends on what type of work you do.

Best of luck to you. Please remember one thing....there is light at the end of the tunnel. My husband is 2 1/2 years cancer free and doing great (knock on wood)!

Take care,

Shelley
Posted By: PeteyB Re: I feel like such a weenie - 05-15-2007 06:31 PM
Hello Susan

When giving advice, someone once told me "know what you know, and know what you don't know! One thing I do know is that I will be transformed into a "weenie" by Thursday evening. And also that you just got good advice from the above posts.

Welcome to the Oral Cancer Foundation website! smile
Posted By: Barbara S Re: I feel like such a weenie - 05-17-2007 07:46 AM
Dear Susan,

My husband had radiation only too
Posted By: William Dozier Re: I feel like such a weenie - 05-17-2007 08:54 AM
You might try small amounts of mineral oil for short term mouth and throat lubrication. I did it on occasion while in Tx per advice of one of many nurses.

Bill D.
Posted By: Donnarose Re: I feel like such a weenie - 05-17-2007 02:47 PM
I only met with a rad onc today, my mom has bot cancer. He gave her a tube of lidocaine...maybe a spray of this could help? I have no idea, only making a suggestion. I'll pray for you for endurance...God Bless and keep a positive spirit.
© Oral Cancer Support - Survivor / Patient Forum