I am tired of pretending to be ok
I am tired of my burning tongue
I am tired of being scared
I am tired of putting a smile on my face when thats not how I feel on the inside
I am tired of worrying about re-occurance
I am tired of feeling sorry for myself
I am tired of medication
I am tired of "My new normal"
I am tired of being tired
I am tired of thinking about my health every single day
I am tired of the the way I talk
I hate talking on the phone
In fact I hate talking at all.
I am tired of digging food out of the roof of my mouth so I can chew and swallow.
I am tired of not tasting food. (I didn't even have tx or rads)


I know that some of you have it far more worse than I do,, and I apoligize for my bad attitude. I just can't seem to continue to pretend nothing is wrong with me. I am sad and I just feel terrible. Believe it or not I am on deppression meds and have been for months. Gosh, I can't imagine how I would feel without them. I keep waiting for the day when things get better and they just don't seem to. I just want to check out for the world. I would love crawl into my house and never leave.

so sad

Wendy, I'm so sorry! You have every right to feel the way you do, I use to think/say the same for everything you listed and sometimes a thought or two like those creep back in. It's a tough journey, we are here for you.....vent away!!!!!((HUGS))

Wendy,

It sucks girl, trust me I know. The more I allowed myself to think about all the changes and annoyances, the more they drug me down though.

Some of the best wisdom I recieved when I first started this journey was "One of the only things you can control is your attitude." and really it's true. I drew a rough hand when I got cancer and lost literally everything but my family, but I never lost faith in myself. I knew if I lived through it, I would find a way to win.

Now, after everything I've been through, life is so much better then I ever could've imagined. I'm physically different then before, not able to do the things I used to, disfigured from facial paralysis...but my spirit and will are stronger then they've ever been. I started a small company that's grown from a small group of friends to a bustling, enterprise that keeps me hopping. I've been able to make a dream of my wife's come true, get back to being a provider...and changing a few people's lives for the better along the way to boot.

Don't allow yourself to be bound by your challenges...accept them, adapt to them and overcome. You may be looking for a shoulder, or someone to just listen...but I wouldn't be me if I didn't give a pep talk.

Eric

Wendy, Im sorry you are feeling so low. This is a good place to vent. What concerns me is your statement about checking out of the world. Please talk with a professional, it can only help.

We all have our daily challenges. Mine arent easy either. Im like Eric, oral cancer has left me disfigured but it didnt kill me. OC tried to get me 3 times but I overcame it. Walking around every single day just like I was a regular normal person gets many stares. Sometimes I forget that I look funny while Im out in public going about my business. I am still the same spunky happy comical person. Cancer cant take my personality from me.

Try to think about something you like doing. Could be anything even reading a book in your favorite chair or playing with a pet. Something other than your ailments to focus on. Maybe take a walk in the park on a nice sunny day. Sometimes I take a book and sit in the park for hours and read. If your kept busy and focus on the good parts of your life then you will have less time to feel down. Im sure you have things to be happy about. You are a cancer survivor, you should be proud that you beat it and are still here to tell about it.

Wish I was able to help more. Hope today is a better day for you.

Wendy, I can identify with your being tired of the "new normal". That sounded like a big fat euphemism to me when I first got into all this. For what it's worth I think your poem is a good thing because you have expressed yourself, got it all out and done so in style - with an admirable honesty. This shows, I think, that you are able to stand back and look at yourself. It's hard to put it into words but from what I read, you sound like a cool person. As Erik says so admirably, this cancer can't take away your personality. A cool person is still cool even with a bit of a slur to the speech.
I think you need to see your doctor about your anti-depressants - maybe you need a change or adjustment. And I can't understand the lack of taste. I was told that taste buds are right through the mouth not just on the tongue. Hmmm. Finally - counselling. I talked to a cancer nurse who had trained to teach cognitive behavioural therapy and that was very helpful.
You are so young at 46 to be feeling like this. Lots of good wishes:)

Thanks all for hearing me. I really don't feel free to vent to my loved ones. I guess part of being a mom is to hide how we feel so we don't upset others. Thus the smiles even the days I don't feel like smiling. I have had a slew of health issues since my cancer diagnosis. It just feels never ending. I think the final straw has been that my tongue burns day and night and I have been having neck issues. So I am still on pain killers, I feel guilty and want off of them, I try to get off and the pain is intense and I think I am somewhat addicted cause I get sick and tired when I try not to take them. I really am not taking a lot, a couple percocet in the evening after fighting the burn all day and I have been on a couple tramadol in the morning it really helps without being drugged up. I am being treated at a pain clinic which makes me feel like a druggie. Then I visit here and feel like the cancer will return, and the waiting is killing me. Anyway I think that is why I can't come here often cause it just scares me to death.
Again thank you all for listening, I pray for all of you and myself daily. This disease sucks and it just makes a mess of us and our lives I am so sorry for all of your pain, hurt and evrything we all go through. I will have my 8 month check july 7th and for some reason I just have a terrible forboding about it, probably nothing just starting to be that time I think.

Wendy, I could have written the same post. You are not alone. I too am tired of it all. We are not allowed to forget and go on with our lives because of the repeat appointments and what not. Just want you to know that you are no alone. I also want to let you know that I see a psychologist on a weekly basis and he is my lifeline. Someone I can vent to and he will give me the help and support I need to make it to the next week. I too put on this happy face when i go and do things around people.

Wendy,

I know all about the pain killers my dear, I was on a very high dose of fentanyl and oxycodone for over 2years...which make your percosets seem like jolly ranchers. I too felt like an addict, even though we're not. You may be physically dependant on them my dear, but for you they are a tool and you need them...for addicts they don't "need" them but can't stop taking them.

When the time came, I got off of them when I no longer needed them...you will too!

Hang in there!

Eric

Wendy

As you can see from all the prior posts, part of the "new normal" is to be tired of all you listed. Actually, I was surprised how short your list was, which shows a better attitude than you imagine you have. Were I to make such a list, it would be much much longer and more bitter. My favorite Cancer book is the cartoon one: Cancer made me a Shallower Person.

My advice is to keep reading this forum on a daily basis. It helps tremendously to realize that what we think are unique personal problems turn out to be just part and parcel of surgery, radiation and/or chemo. None of them are a picnic.
Read about how others deal with the same issue(s).

For what it is worth, I emphathize with being tired of "talking" on the phone. I had to spend 4 hours last weekend seeking emergency road assistance for a rental car lost key and 5 out of the six operators just could not understand my speech so I had to spell out T -A -O- S for example, and spell out letter by letter simple things like: "the locksmith code you gave is wrong" . Very frustrating and I had a year's worth of speech therapy. Face to face, I do quite well.
Again, good list, I'm tired of all the same things. If you weren't tired of this, there would be something wrong with you. All we can do is compare these things to our alternative: being dead and choose life each day.
Keep the Faith
Charm

Wendy, you're here with friends and we all know exactly what you're going through. Sometimes life just plain sucks. But othertimes it doesn't. There's no way to predict it.

Let me say though that you shouldn't have any regrets or second guesses about the painkillers. If you need them, take them. I learned this from my oncologist and her nurse early on and they were right. All the worry and hassle and distress is bad enough without being in pain too. A couple of percs in the evening is nothing, in my opinion. And Tramadol is even weaker.

However we can help you, please let us.

David 2

Thanks everyone for your words of encouragment. Last week was for what ever reason extra tough for me. I was down and tired and I don't know what else. But I have been spending more time here, and I guess, it must be helping me feel less alone. I am still afraid, and I guess I always will be but at least I know that I am not alone and I am going to try to spend more time here where people that can relate to what I am going through will help me to deal with my fears and my stuggles. God bless each and everyone one of you.

Wendy, Im so happy you are feeling better!!!! OCF is a close knit group. We are like a big family. Thanks for posting that you are feeling better.

Last year when you joined, I was in the hospital without internet access. I was there for 2 months. Some of my OCF friends came to see me. One special friend would visit every couple days. My hospital had e-cards on their website. I must have gotten well over 100 of them from all over the world. I would have my son read them to me when he came to visit. At that time I was too sick and wasnt able to pay attention enough to read them myself. It made me feel so special knowing I had so many OCF members praying for me. I still have all the get well cards I received.

Keep coming back and posting. You will form some wonderful bonds with other members. Maybe you will even be lucky enough to have some people in your area. I have several OCF friends in my area. Never know, you could have someone in your same town.

Hi Wendy,

Glad to know you are feeling a little bit better. I was wondering about the burning? When I get that it is usually a sign of thrush. It makes your mouth burn. It is something we all get due to the dry mouth. You might want to talk to your Dr. about it.

I use the shower to help with the Neck being stiff. I would stretch and turn my neck to help loosen it up. I still do this to this day.

Yes, it is hard to find the work arounds we all need. Yes, the new normal is work. I think we all have days when our side effects get to us. Some days are better than others, just tackle one problem at a time.

Hope some of this will help.
Take care,
Diane

I second what Christine said. I was out of pocket for two weeks not because i was sick, but because I was busy getting through the end of the year at school and I had members find me and one even called cause everyone was worried. It meant the world to me.

Wendy,
I'm sorry that you are having to deal with the fears, the unknowns, the "new normal", and all that goes with cancer. I don't dare claim to know how you feel b/c I haven't had oral cancer but I've watched my mom go through it several times over the last 5 years and I know how scary it can be. Please know that I will keep you in my prayers. Please stay on this website - people here give such great advice from their own experiences and I'm sure it will help you. Take one day at a time - you will be fine.

Nancy T

I have received many great cheer up letters and a few phone calls from the best support group in this small world. I am glad you feel better and hope you come here daily as I do, even if I just read others posts. Nothing makes my day until I come here for the 2nd and 3rd time just to read each day.

im tired of
constantly feeling heartbroken
worried for my mother
worried how she feels
worried about her fistula opening up wider each day
worried about how long its taking for surgery
worried that MD Anderson will say 'theres nothing we can do'
worried how long we'll have to wait to do surgery with her Dr at home if thats the case
worried if shes had her medicine
worried that shes fallen over while walking around the yard
worried that everyone morning when i go to check on her that she wont be alive
im sick of being away from home and sleeping on this crappy bed.
sick of my stepfather keeping me up every night with the tv b/c he watches it with the volume on FULL BLAST
sad that i planted a garden at home and now its all dead because i havent been home in a month
sad that every time i look at my mom i wonder if its going to be one of the last times. or one of the last times we say goodnight.
sick of calling ppl to make appointments and fax papers to prove she needs help.
sick of WAITING ON EVERYONE IN THE MEDICAL FIELD TO HELP US. That extends to even the idiots at the pharmacy. I feel like all we do is hurry up and wait for others.
sick of not having any help from family

sorry to hijack your thread wendy. it felt like it was good place to let it all out

Wendy and Emily I am hearing you. As a carer I can relate to you Emily but with watching Steve and what he is going through I can also understand what you mean Wendy. Don't you just get so sick of the entire thing. But what's the alternate? Give up. NO WAY. We'll all get there guys.

Yep I'm sick of it all and I hate cancer with a passion for all it's taken from us. But my boy is here with me everyday and when I have days where I am so over it I just have to think of him and how happy I am that he's still here with me.

Take care and keep fighting no matter how hard it gets some days. I have people say to me "I don't know how you two keep going". What choice do we have? We have to.

Wendy

Wendy I appreciate your post. I have a friend who each and everytime I speak with her it is a pity party. But she is healthy, her parents are alive, her kids are doing great, she has a successful business, huge amount of assets she has saved through the years. But her siblings are all retiring, her 6 figure income is down and things aren't great with her husband.
Your post put into prospective how very lucky both of us are.
And the Pity parties stop here.

Hi everyone,
I began my journey last September. I found this site and posted a couple times. I am not sure why (I think it was the drugs) but I just couldn't follow the threads and remember what I posted or how to find it. So I have gone through most of the last 10 months alone. That is without the support of others that have had OC. I think when I posted this I was so lonely, scared and depressed I just couldn't get beyond it. But since I have started comming here and sharing this experiance with people who understand I am feeling much better. I hate this disease, but hopefully if I stick around here, I don't have to feel so alone.

Thank you for all your support and care, I hope I can repay it eventually.
Is there a facebook page for this forum?

Emily,
I am so sorry you have to through all of this. When I see you it reminds me of my own daughter and how I would be so sad for her, if she had to go through this with me when she should be out living her life with her husband and in her own home. I am so so sorry you have to do this. Thank You for being there with your mom.

Wendy there is a FB page. It is http://www.facebook.com/home.php?#!/oralcancerfoundation?ref=ts

I am sad about everything I have to do at this point in my life but I dont resent my mom AT ALL for it. I resent the hell out of this disease and it taking so much from us. Im on my summer vaca from work. I should be out having fun and hanging with my friends. Work will start back late next month and what will Ihave to show for it?
But I wouldnt be anywhere else in the world right now than right here with her. She needs me and I need her