Last time I logged on I was here I was here to help support others. But now I found myself needing support. I should be so thankful that I am a Oral Cancer Surviror but maybe I am just feeling sorry for myself. After all this time that has passed from my treatments I feel I should be up and around enjoying life more. My husband reminds me that I do have bone marrow issues due to the chemo and the doctors state I am in a slow recovery. I find myself thinking of all the negative which is the constant jaw pain, dealing with dentures which causes more jaw pain, having no energy and dreading making something to eat that doesn't take alot of chewing. My husband comes home after work to find me still in my PJ's and haven't done to much. But he understands but I don't. I have had some great days but have more bad days then good lately. Sometimes like we all have done you ask WHY. Yes depression is here and I have started back on the meds. I think I just need to hear from others that have gone through this to get me back on the right track.

Tammy it may help you to read Charms thread about Christmas it may help.This is a time of the year that our frailties and the things we have lost float to the surface and the pictures we see of happy smiling faces eating and drinking and living life to the full can just bring home how different your life is now.Its easy to say you should be grateful for what you have but human nature being what it is, grieving for what you have lost and what you have to endure is normal and very understandable.

Tammy

It is definitely not just you. It is an extremely difficult time of the year for many of us (more so than usual). You are not alone.

Ditto to Liz's message.

Karen

I'll join in this thread. I have officially cancelled Christmas and everything that goes with it. I am not buying any gifts, no tree - no baking, etc. I have - for all of my life - been a "nut" about Christmas but I am tired. I'm tired of buying things for people and having them call my gifts "random". In order for me to get something that even remotely relates to ME, I have to pick it out order it, pay for it, and collect later - otherwise I end up with candlesticks.

I'm tired of carefully thinking of everyone and making sure their stocking is full of personalized items, when NOT ONE PERSON so much as buys me a lottery ticket. I am tired of baking only to have people bitch at me because they eat too much. I'm sooooooooo done. My family says that I shouldn't do things if I do them "expecting" appreciation or a thank you. Okay. I can do that. So, I cancelled Christmas and have done not one thing.

I have however loaded Christmas music which I love onto my Ipod and enjoy that very much. I too am tired of it all.

Donna

Thanks Cookey but I was one step ahead of you. I did read the post and it does help. Pandora I hear you and just keep listening to your ipod and enjoying the music. I am so thankful that we have this web site for support. As I sit here on my computer and typing I feel that I am in another place where I am understood. It is so hard to explain what is going on inside of you when one has not walked in your shoes. I appreciated all the replies and anymore to come.

Tammy, where ru in Arizona? I'm in Mesa just starting all this crap (or at least since May) and hating it all for sure. My next super dose of chemo is Dec. 23rd so Christmas for sure is called off. My family thinks I should just "celebrate" because after all my sister is doing all the cooking and stuff. Well, why would I want to be sitting in a room with a bunch of jolly people while I'm making sure I'm close to a bathroom 'cause I'm sick as a dog. I really haven't been into Christmas since my husband died but now I have no reason to celebrate anything.

Bloop19 I am in Lake Havasu. As far as your family goes right now you need to take everything one day at a time. They have no idea how you are feeling inside and maybe just trying to make this a nice Holiday for you. But right now you are just worrying about sitting by the bathroom. I feel for you and understand. I have sucked it up many times for family and friends and sometimes it was good because it took my mind off things but then yet other times they could see how sick I was and stared not knowing what to say or do. So my advice is to see how you are feeling that day and take it from there. I am so sorry that you lost husband. Remember take it one day at a time on YOUR TERMS.

This friends and family thing has long been a massive bone of contention,and a subject much discussed on the forums many times.The answer always come down the same.Anyone who doesn't actually travel with you on this journey 24/7 really has no idea,and can really make the most innappropriate remarks and stupid statements.The time scale involved in treatment and recovery is beyond most peoples conception."you should be over it by now" being a popular misconception.The fact that people,no matter how much they love you truly believe that you should make an effort for christmas (assuming always that this recovery thing is mind over matter),is indicative of how little they understand.I wonder if some of this is to do with our reluctance to be honest with our loved ones,(Robs favourite phrase when asked being "i am fine" duuuhhhh!!!!)and some of it is their fear of the unknown and their need to convince themselves that we are the same as we were before.

Its a complex subject and there are different answers for different people.Bottom line here .....its personal,and no one can tell you what or how you should feel.Don't suck it up for anyone.tell the truth.If they understand all well and good,and if they don't,make your feelings clear.

Cookey I couldn't have said it any better. I wish I would have read this before I attempted to suck it up for my friends wedding and a few other occassions, I guess I just feel since I am so far out from treatment that I should be feeling a lot better by now. My mother-in-law even tried to to book at trip to Italy for us and she would pay for everything. I told her that I am not up to the travel then finally after a few months still bringing it up and had to look right at her and tell her in a very loud direct voice I DO NOT FEEL GOOD! They just don't get it, don't you think I would jump at the chance. She is in her 70's and likes to remind me that she is so glad she is so healthy. Well good for her but why tell me. It has now been about 6 months since she has mentioned Italy. I am so relieved. But ohhh I would love to go to Italy someday!

Don't close the book on a trip. Hopefully that will be a reality for you someday. When you are feeling low-go there in your mind. I have been trying to use visualization lately to take my mind off the sadness this time of the year. Christmas is my favorite holiday but being that it is the first since losing my husband, it is hard to deal with this year. I just bought Andrea Bocelli's new holiday cd and it is wonderful for relaxation and lightening the mood.

I belong to a young widow's board and we have a term for people that just don't get it-DGI's. I try to be mindful of the fact that I was once one. I don't believe that I had half the empathy or understanding for cancer patients that I have now. I surely don't have the knowledge of being one myself-just one that was along for the horrible ride. Try not to be too hard on them-I truly believe the severity of your situation is lost on them or is just too difficult to deal with for those who are close to you. I can't tell you how many times I had to listen to my father in law's physical issues WHILE my husband, his son, was dying in Hospice. Take care of yourself and enjoy your music.

Sue

Tammy,

Yes depression is a part of our cancer and it's side effects but please don't lose sight of your goal when you heard you had oral cancer and that was to beat your cancer and you did that and you should be proud that you did. Yes you have side effects but you are here for your family. You are here to see the sun come up and the moon to go down and everything in between. You are still the person you were before Tx so let that person come back and tell this part of cancer it's outta here for good.

Tammy

All the advice you have gotten is great - so good in fact that it leaves me little to add except to reinforce that your feelings are not odd or abnormal. Christmas is exceptionally tough on us oral cancer patients.
You will love Italy when you go - I wish my mother-in-law had offered to pay for us ;)- but I went in between cancer occurrences and found the pasta just the right texture to eat.
We just scheduled down times at cafe's in the plazas (in Rome) or on the canals (in Venice) to accomodate my lack of energy.
Keep posting here and enjoy OCF's version of the New normal Holiday Spirit
Charm

OMG, I am so glad I am not alone. I am trying to remember what Christmas is all about, but I have no Christmas joy or holiday spirit. I want to put a Christmas tree up, but do not have the energy to do it. I have already tol dmy family that we are staying home for Christmas and not going anywhere. So many of them are planning on coming to my home so the kids can enjoy Christmas. They are coming at different times. I will probably be in bed sleeping or at least trying to. I just do not care about Christmas this year.

I told my cousin that I would not be attending her xmas party. She made me feel pretty bad with all of her drama about missing me. I explained that I am going into the hospital on Tuesday and am not going to risk getting ill with a cold or any thing. When my mouth started to cramp I handed the phone to my wife who kindly wrapped that conversation up for me. I know how precious every day is - I wake up with a chuckle and a smile that I am alive. I hug my wife and cats first thing every day but I would not mind fast forwarding through christmas. This time of year can be torture. Thanks for letting me ramble. Good luck avoiding the blues. I wish you the very best chance of happiness and health.
Mark

Tammy,
Your lack of energy may not be depression. Have you had your thyroid checked recently. Feeling tired is one of the symptoms of hypothyroidism. If not, have your GP get a full panel thyroid test to get your TSH level. You want to keep that as close to what it was before you had radiation. Don't take an answer of it's in range because the range is fairly wide.

Try to take a walk every day, weather permitting, and enjoy the outdoors. It may help your mental attitude and improve your energy. Hope you are feeling better soon.

Take care,
Eileen

Donna, Im sorry that this year is a sad holiday season for you. Sounds like you need to be appreciated alot more. You are a wonderful person. Makes me feel bad that the people closest to you cant see how great you are. They need a good boot in the behind to wake them up.

(You should print this for them to see.)

Thanks to all of you for venting. I find myself so "weepy" this time of year because I can't do everything that I have done in the past. I am back working, but that's about all I have the energy to do. It takes me so long to eat anything, and I am so sick of Ensure that I could scream. I try to be positive for my husband because he worries about me, but it's hard. I had a good result from my last PET scan - all clear, but it is hard to keep up my spirits.

I guess I'm lucky in the fact I have small children, who have not lossed the excitement and mystery that the holiday holds. We have snow and put up the tree and some decorations...and to see the light in their eyes and the excitement in their voices...I'd go through treatment again just to see that.

Your mind and spirit are much like your physical body. If you fill your body with nothing but beer and junk food and fail to excercise, your body will not be in condition when it's called upon to perform a physical task. Fill your mind with wisdom and learning, fill it with tales of heroism and acts of extreme survival or perserverence. Focus your thoughts on the positive, the good and beautiful in life. Exercise your mind and fill your spirit with that of triumph and hope

If that does not work, seek chemical help. I've not been a survivor as long as you, however I am in a very similar position. My face is paralyzed, I haven't "worked" in two years, I'm recovering from a major surgery and I too cannot eat much and am left to Ensure and pudding. I'm done crying for what I've lost and am now looking to rise from this experience stronger and more focused then before...with a new lust for life.

Good luck to you

Eric

Tammy

Where are you? time to post.
Charm

You know I have to say that my colleagues have helped me a lot this Christmas. They told me not to worry about my kids thie Christmas. Well this afternoon two of my colleagues were at mroe door with boxes of Christmas presents for my boys and groceries for us. Many of the students at my school took part in the Christmas shopping getting the gifts for my boys. I was so excited and thrilled. I knew the gifts were coming as they spoke with me prior about those, but had no idea the groceries were coming. I cried my eyes out in joy. I have a great supportive school and miss them so much. They are going to make my kids Christmas a delight this year. I still am not in the spirit, but my kids are so ready for Christmas.

Eric,

I just got finished posting about not realy enjoying this season this year and you post a real reminder of what I should be happy about.

My wife and son love the lights out front this year and after reading your post I decided to take my son to Avitar with some friends. We had a great time. When we got home my wife showed us some of the things she got for her father and I forgot all about the long drive to wisconsin to deliver them. My son is so exited to see his cousins on the other side of the state that I'm now fairly hyped about that drive too.

Thanks for reminding me about the flip side of life. You made this a better holiday already.

Kelly

Kelly,

Thank you, it makes me feel good that my outlook positively affected somebody. I know that sometimes on these forums I can come across harsh (sorry David) or blunt, I'm a cut and dry kind of guy. I feel my heart is in the right place, my words are just not as eloquent for some people to relate to.

I guess that's how I got inducted into Frackhood...

Happy Holidays and from the sound of things you've made the decision to make them a good one...great job my friend.

Eric

Tammy,
You have to be strong. I do know that. At first it was hard, but it is very necessary. I would lay in bed and watch TV, as I could think about something else then. It is now 13 years later, and I have had 2 more cancers, with 2 surgeries, and am having probably more trouble that I did at first. I had a negative biopsy last Feb. and it will not heal. Hurts all the time, and I can't wear my bottom teeth or eat much that isn't soft. But I have my Yorkies and my books, and a couple of kids and grand kids, so I feel lucky. It could be a lot worse. I have been cancer free since 2007. Bless you and I wish you well.
Jeanie51
Oregon

Karen Rose,
I just read your signature and wanted to tell you how bad I feel that you had to go through so much. I sure wish I would have had this web site 13 years ago. It would have helped so much. I do hope and pray that you get better and better.
Jeanie51
Oregon