As the Holiday (or Holy Days) approach, it can be hard on us. The emphasis on food and parties can be depressing for those of us who can't eat or have swallowing difficulties. The weariness of radiation that lingers on after the treatments are done doesn't help either.
I was struck by this headline on an article in my local Catholic newspaper. While I object to the tyranny of positive thinking, the author's little story made its point to me
[quote]In 1953, I was in the US Army, a military police officer walking guard duty at midnight on Christmas Eve. There I was, a lonely draftee serving at Fort Sam Houston in San Antonio. My civilian life seemed a million miles away, I could actually hear the choir singing Christmas carols at the post chapel where midnight Mass was being held.
I felt terribly alone. It never dawned on me that night that I was giving in to self pity. Indulging my negative feelings kept me from realizing the wonderful opportunity I was given.
It would have been so much better had I sung along with the choir.... the gift of joy never descends on those who think they are a poor helpless creature.[/quote]
Just a reminder that we can cope with the Holiday spirit even when our spirits are low.
Charm

Charm,

Thanks for that story - I needed it. Thanksgiving hit during my "rough patch" of round 1 induction chemo. I realized IC is nothing compared to chemo-rads, but still felt sorry for myself for feeling sick, and feeling the need to act like I felt better than I did. Truth is, I was with people I love, and was able to eat a few things (hooray, overcooked veggies and gravy) and the pain meds that helped me eat only made me tired, didn't knock me out. I had to do an attitude check a couple of times.

Here's to all of us singing along . . .

We all have to do an attitide check sometimes....don't we? lol

Let me make it clear that this post was aimed at myself, and not any poster here on OCF. I would not want to discourage anyone from venting their frustrations, anger and fear. I had to rewrite our family Christmas letter as it just reeked of self pity. I ended up noting the eerily appropriateness of my GPS' "Recalculating' when I deviated from the directions. We are "Recalculating" the course of our lives. It's a different road then we had planned, but it is still an adventure.
Charm

well i for one can do without the holiday spirit.All it means to me is a day to day reminder,from first hospital visit on the 8th december through to FNA,biopsy,laser dissection,results,MDT meeting,body scan the most miserable christmas ever hundreds of miles from my family alone while rob was in bed for 3pm unable to eat or drink with the secondary tumour pressing on his windpipe.Holiday spirit? Bah humbug i hate christmas.Self pity?damn right and damn cancer

You have every right to vent and here is a good place to do it, all we can do is our best and I try to remember that there are many here who have had a more difficult time then I had!!! Semper-Fi Bob

Yes Charm- We understand first hand your pain. You want to eat so badly but you can't- and it just sucks. Everything social revolves around food too. I've been there - not during the holidays - so I can only imagine how much more difficult that must be because the holidays are so food ephasized.... You have my sypathetic ear and empathy for sure 2000%

Wishing you some comfort and joy in some way during this next month.


KATE

This will be my first Christmas after Dx, surgery. As in my signature, I had total glossectomy, with flap permanently anchored to floor of mouth. Even if I have all the will in the world, until I find the right technique, I could not eat/swallow solid food (because I could not control food in my mouth) and therefore have to live on blenderized foods.

So Christmas-wise, that means I have a very limited range of food choices to co-celebrate with family and friends. From where I come from, Christmas season is one of the two most celebrated Holidays (if not the most celebrated Holiday).

I have two choices about my situation: be bitter, or be better. It's my choice how to react and feel during this season: stay at home in a sulk, or celebrate; just like the MP in the quoted story above - indulge in negative feelings or be joyous, too.

I am constantly reminded that "attitude is more important than event". (note: "more important"...so this phrase doesn't belittle the event)

And as I read the actual experiences of posters under various topics of this board, the more I am reminded that I still have a lot to be thankful for.

Hi Everyone,

I just read this entire thread and it is heartbreaking to me how the holiday focus on foods alienates the OC population.

We have been invited to an annual Christmas dinner that in the past was something we looked forward to. As my husband is recovering from jaw surgery, this is too much of a challenge for him at this time. He is still on a liquid supplement and standing around watching others drink spirits and eat passed hor d'oeuvres would be torturous. The graft on his leg alone makes this difficult not to mention the sutures on his face.

We have decided not to go which is fine with me. However, some of the other friends who are going are still sending notes in their Christmas cards really pushing the event. I know they mean well but part of me feels that they think Clark should be better by now and should want to come just to be with friends. What??

My husband does not feel sorry for himself but he also does not want to put himself in the arena of being the odd man out. We know that in time things will improve. So for now we're laying low.

Maybe there can be a different way to celebrate the holidays that can include those whose eating patterns have changed. I am discovering that food, like alcohol, can be overrated. I mean that in the kindest way. Clark really misses the desire for and the taste of certain foods. I am just trying to find a place for him to feel comfortable regarding food issues.

Peace to all!

Anita

Anita

How I wish my wife and I were still invited to Christmas parties. Even though I cannot eat or drink, I have attended school reunions and anniversary parties where the food and drink were indeed the center of attention. I just whip out my PEG and use a syringe to put some alcohol down the feeding tube (all my doctors agree as long as I bypass my mouth and throat - no harm)
While I can respect and understand your husband's reluctance, it's too bad he doesn't post here so I could tell him directly to reconsider. It can do a world of good to reconnect with friends. Plus it would give you a break from caregiving's focus on cancer. Perhaps you can make an appearance - socialize and then leave early. Everyone would understand.
As I started off - our problem is that our so called friends treat us like I am dying and shun us. (I know, they weren't really our friends after all). So maybe share this thread with him: life is too short to pass up an opportunity to celebrate with friends who still miss him and you and are eager to see you. The world is not going to adjust to us, we need to adjust to the world.
Just my opinion but then I don't mind watching others eat & drink nor do I mind being a stand out in a crowd. (I wore a 13th century Tang Dynasty Chinese warrior silk recreation of the outfit of the Wind character in Flying Daggers to my very staid agency for my retirement party for a ceremony with our office's top Presidential appointee)
Charm

JoJo

Your post gives me the opportunity to add another Nietzsche quote to the OCF mix (I have to keep up with Christine & EricS)
[quote]�Out of damp and gloomy days, out of solitude, out of loveless words directed at us, conclusions grow up in us like fungus: one morning they are there, we know not how, and they gaze upon us, morose and gray. Woe to the thinker who is not the gardener but only the soil of the plants that grow in him.�[/quote]
Sounds like you are a gardener, weeding out the self-pity.
Charm

Charm,

Your reply is beautiful. I got teary eyed reading it and at the end I laughed out loud. Thanks for your heartfelt words. You gave me a lot to think about.

Much of my husband's reluctance in participating outside of our home right now is based on his lack of energy, level of pain and this persistent infection. He gets so wiped out. Right now he is napping--we were out for about an hour this morning.

You are so right that our connections with friends are so important. We have had a few folks stop by for visits. And we will be celebrating Christmas with family.

As a caregiver, I have to push myself sometimes to get out and away from this stuff even for an hour at a time. And I do feel guilty that I CAN escape from it when he can't. I love him so much and I want to spend as much time as I can with him.

It's all a tricky balance. Did anyone take a picture of you in your Tang Chinese warrior outfit? Thanks so much--you made my day!

Anita

Anita

How very nice of you. I must confess that I have worn that outfit not only to my retirement ceremony but also to my 40th High School Reunion - since the invitation said "dressy casual" as well as to the American Society of Mosaic Artist's ball. I was the only gentleman at all of these events with a long flowing silk gown and brocade vest. I do not cut as dashing a figure as the movie star shown here - just scroll down past the disney ad: Tang Dynasty costume but you can get the effect.
Charm

Anita

I forgot to add how much I can relate to how your husband feels. The song by Snow Patrol : Chasing Cars not only has evocative lyrics but an appropriate tone of what this period is like. Every-time it comes on the radio, my caregiver wife and I tear up. It was on during the worse period of TX for me as I lay on the couch seemingly forever
[quote]We'll do it all
Everything
On our own

We don't need
Anything
Or anyone

If I lay here
If I just lay here
Would you lie with me and just forget the world?

I don't quite know
How to say
How I feel[/quote]

I love this song but never knew the lyrics. thank you.
Charm- I'm so happy that you are still the life of the party

The news of Stephanie's death puts this thread into perspective. When I was alone at night in the hospital and posting here at OCF after the surgery, she was the first one to answer me. Now she is gone. In looking back at the archives, I see that the second person to answer me on that thread was Patty -( Good 1)who also has left us. That makes two out of the only three people who comforted me that night taken by this disease.
There was a little ditty in the paper the other day that went something like this: [quote]Christmas Season draws near, not much reason for cheer, but at least I'm still here[/quote]
I need to remember that.
Charm

We all need to remember that Charm ,especially those of us consumed with self pity at what our lives have become thanks to Cancer.Stephanie was so young and had so much to look forward to its tragic and unfair and downright SUCKS.
On Sunday i went to the hospice Light Up A Life service in memory of loved ones lost and a 16 year old with an amazing voice sang Run by Snow Patrol.The words were haunting

"Run"

I'll sing it one last time for you
Then we really have to go
You've been the only thing that's right
In all I've done

And I can barely look at you
But every single time I do
I know we'll make it anywhere
Away from here

Light up, light up
As if you have a choice
Even if you cannot hear my voice
I'll be right beside you dear

Louder louder
And we'll run for our lives
I can hardly speak I understand
Why you can't raise your voice to say

To think I might not see those eyes
Makes it so hard not to cry
And as we say our long goodbye
I nearly do

Have heart my dear
We're bound to be afraid
Even if it's just for a few days
Making up for all this mess

Liz

All too true and well said. Since we are on a Snow Patrol roll, here are the entire lyrics to Chasing Cars for MissKate

[quote]
"Chasing Cars"

We'll do it all
Everything
On our own

We don't need
Anything
Or anyone

If I lay here
If I just lay here
Would you lie with me and just forget the world?

I don't quite know
How to say
How I feel

Those three words
Are said too much
They're not enough

If I lay here
If I just lay here
Would you lie with me and just forget the world?

Forget what we're told
Before we get too old
Show me a garden that's bursting into life

Let's waste time
Chasing cars
Around our heads

I need your grace
To remind me
To find my own

If I lay here
If I just lay here
Would you lie with me and just forget the world?

Forget what we're told
Before we get too old
Show me a garden that's bursting into life

All that I am
All that I ever was
Is here in your perfect eyes, they're all I can see

I don't know where
Confused about how as well
Just know that these things will never change for us at all

If I lay here
If I just lay here
Would you lie with me and just forget the world?

[/quote]

I so much identify with things you all are saying. So much of our social life centers around food. While I am trying to eat more, it takes so long to eat anything! My husband and I went to a party Saturday night, and I was so proud of myself that I ate two meatballs and two pieces of shrimp...then I went home and had my good old Ensure. We are supposed to go to a Christmas party tonight, and I probably won't be able to eat much there, either, but we always have homemade pie, and hopefully someone will have made some cream pies. (Lemon Merangue sounds pretty good.)

zengalib,

If you would add a Signature Line we could identify more with your post above. For instance it was a long time post Tx before I a lemon merangue pie would have tasted sweet to me so reading your time line would help me to understand where you are post Tx.

Actually, there was no lemom merangue, but I had a piece of chocolate cream pie, and that was pretty good, too!

Holiday cheer. The holiday season, what it means to me. Two years ago I was at the height of my success professionally. I had slight jaw pain however professionally and personally I was truly at a peak I had never achieved before.

I had lead a hotel to national prominence and profitability. I had successfully found and added a new hotel project to my companies growing hospitality business. I was making an extremely good living, my family wanted for nothing...but a bit more time from me.

January 2008 I was given my diagnosis, two years later I'm still recovering from what was the fight of my life. During this time I have lost financially everything, a dear friend and business associate, my wife's grandmother and just a few days ago, my sister. All no longer among the living. I share this not to "trump" anyone on loss or situation as there are others with worse situations then mine. I share this to say...i can relate.

I still listen to a song that get's me every time...Defying Gravity from the cast of Glee.

Something has changed within me
Something is not the same
I'm through with playing by the rules
Of someone else's game
Too late for second-guessing
Too late to go back to sleep
It's time to trust my instincts
Close my eyes: and leap!

It's time to try
Defying gravity
I think I'll try
Defying gravity
Kiss me goodbye
I am defying gravity
And you wont bring me down!

I'm through accepting limits
''cause someone says they're so
Some things I cannot change
But till I try, I'll never know!
Too long I've been afraid of
Losing love I guess I've lost
Well, if that's love
It comes at much too high a cost!

I'd sooner buy
Defying gravity
Kiss me goodbye
I'm defying gravity
I think I'll try
Defying gravity
And you wont bring me down!

To me, no matter how I've changed physically, my spirit still is one of defiance to this disease and to triumph over adversity, no matter what.

Eric

Great attitude and showing a lot of Holiday Spirit. Guess I should have subtitled this thread inspirational sing a long considering how my replies and others have skewed to songs.
HO HO HO - perfect timing as in the DC area we are expecting 7 to 12 inches of Snow tomorrow and with the subfreezing temperatures, we should have a White Christmas.
Charm

We have the snow charm,about 6-8 inches and a walk with the dog has lifted my miserable spirits no end lol.Now its hot chocolate in front of the fire Brrrrr

Love it, Eric - Viva defiance!

Just to give credit where credit is due: The song "Defying Gravity" is from the Broadway musical Wicked. (Great show, if you haven't seen it. It's the story of a free-spirited girl who grew up to become the Wicked Witch of the West in The Wizard of Oz.)

Leslie

Wicked is a Wonderful show. Much much better than the book, which is usually not the case. My wife & I saw it three years ago ( before the Cancer) and it was by far our favorite. Thanks for bringing back happy memories for the holidays.
Charm