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Halloween

soccerfreaks's picture
soccerfreaks
Posts: 2801
Joined: Sep 2006

I am not, lately, known as a social person. Since the tongue and neck thing, in particular, I have tried, and I think at first I did a good job with it, but eventually, and with the things that followed, I sort of closed up a bit.

There is always eating involved, principally, and that is, or can be, awkward for me. For a time, even drinking was an issue. Still, I made it out there, hung out with my friends, did what I could to fit in.

Eventually, though, it became, not too much, but not enough. Or both. I am not sure. I was frustrated with being treated like I was normal when I certainly was not, and at the same time I was frustrated with being treated like I was different, which, in fact, I was, to some degree, but not enough to be treated that way.

It was an interesting dichotomy, to be sure, but a frustrating thing to live with.

I chose the wrong thing, and not on purpose, but just by happenstance. I began to turn down offers to go with my wife to functions. Watching people eat almost killed me. It was hard to bear, to be honest, to smell the food, to see it, to savor it and not be able to eat it. But that is just an excuse, really.

It is a good one, don't get me wrong. There is not much tougher than sitting at a table ladened with bounty and people piling a bunch of it on their plates while you are, at some point, not even allowed any more to smell it :).

I ignore that dictate, by the way, whenever I want to. The wife just THINKS she controls me :).

But it is true that I have tended to avoid social occasions. Avoid? Heck! I have run in the opposite direction!

The food thing is one thing, maybe the critical one. The other is that I look like I am dying, in my humble opinion, even though I am purportedly not doing so now. I am underweight and working on that, I've lost some hair, and the hair I have is gray. I am not being fashion-conscious here, folks, but simply telling you that I already had two strikes against me for my friends: he can't eat and he looks like he is dying.

That tends to freak people out, more so if they care about you.

Oh, and strike three? I have an anxiety issue, something that came up before the cancer, so I cannot blame it on that, but it was under control prior to the cancer, and is now back pretty much in full force.

I have not been a social person.

Last night, Thursday night, my wife hosted a party for her business women's group. I frankly went to this room, which my son calls the Bat Cave, and hung out for much of the night. I do not think most men would blame me for that. Who, after all, wants to hang out with a bunch of ladies, most of them elderly, eating and chirping and cackling?

Not me. Not my son. He came to me for refuge. I had none for him, so he went to bed :).

Eventually, though, I did go out. I took some pictures. One lady, I think the youngest of them, was dressed in normal attire and carrying a sign that said NUDIST ON STRIKE. I thought it was cheap but clever, and spent much of the rest of the evening trying to renogiate her contract, if you know what I mean, and I think you do.

They are wonderful women, all of them, don't get me wrong. They have shown their concern for me, and especially for my wife, throughout this shared ordeal. There was, however, a World Series game on, and the only one of them who truly intrigued me was the nudist on strike, and I tried all of my tricks but could not get her to take her clothes back off. I even walked by where they were sitting, a load of clothes in my hand, and asked if she wanted me to wash hers while I was at it.

She paused, I think before saying no. Perhaps I am projecting.

That was last night, Thursday night. Tonight, Friday night, was OUR party, our friends, if we had any, our rules, all of that.

I did not know what or who to be. I wanted to be the Joker. The pathos is there, no matter who plays the guy. And the makeup is easy :).

A rodeo clown was suggested, and that is close enough to the Joker without being so tragic that maybe I should have done that.

What I did, though, was to worry.

It has been more than three years since we had a real party at my house.

I mean, by real, we have had relatives here, we have had friends here, but we have not had a gathering of folks of any numbers since a Fourth of July the very year I was told I had tongue and neck cancer.

Between then and now, there has been so much going on, so much weakness on my part, so much chaos, so much of everything, really, that we have never even considered such a thing.

And then there is me. Hiding out in the Bat Cave, the Man Cave, as one friend likes to call it.

I am not blaming this on cancer, by the way. I had the anxiety and panic and all of that long before the cancer. I took care of it, had a successful professional career, in fact, and the cancer only brought it back. My bad. I will fix it. I am fixing it.

In the meantime, as tonight approached, I went into a sort of stasis. I had ignored advice to get a costume or to buy the stuff to make myself into something, and now here we were.

In case you don't know, I have an adversarial relationship with the mask I wore during my radiation. They screwed me down to a table inside of that thing and strapped my hands down and had their way with my head and neck. It sucked. If you are a head/neck cancer survivor reading this, let me tell you: it sucks.

I hated it, and, yet, I kept it. I have read of a bunch of others who did the same. Some throw theirs away, but a lot of people keep them. I kept mine. But I will tell you, it has been like having a Chucky doll in the house :). I am halfway afraid that it is going to come alive and do me more evil.

That is foolish, of course. But it is also foolish to retain the danged thing, don't you think?

What possible good comes from keeping it?

Until Halloween.

:)

(When it is not Halloween, the mask is in the deepest recesses of a closet that I rarely even open, I assure you. I hate that danged thing!)

I have put it out in a window for the last couple of years, and my wife says I am a sick pup for doing so. She may be right. One thing for sure, it is not going on MY face.

Until we are having a party and I don't have a costume and the guests have started arriving, the early ones, and are fairly well decked out.

I ask my wife to blacken my eyes, (not in the usual way :)), and I put fake blood around my mouth. Please note for future reference that I said FAKE blood.

It takes me awhile, but I stuff my mask into a hoodie (a sweatshirt with a hood, for all of you who are of my generation), and I wear it, and it is, frankly, modestly, looking pretty darned good. It is incredibly scary, even before I add the tears of fake blood from the eyes.

Not bad, if I must say so myself, and I must, because the wife is pretty hacked that I did not plan in advance, and probably even more hacked that I was able to bail out so easily :).

It really is scary. Maybe just to me, I don't know, but it scares the heck out of me. I look in a mirror, and I want to cry.

A problem develops fairly quickly, however: beverages are hard to put into your mouth through a mask of this sort, and when a straw is suggested, I scoff at the notion. No man drinks a beer through a straw! (Well, my brother in law does, but he has CP, so he is forgiven the transgression.)

This means that I am putting the thing back on when people arrive, and then taking it off, then putting it on, then taking it off. You get the idea.

(I hope.)

So, I put the black stuff around the eyes, and I put some fake blood around my mouth and on the mask, and I am good to go, and all of a sudden, there is a plop.

A plop.

A bit of blood drops onto my hand. What? I know I smeared that fake blood pretty well, and I know I didn't put any on my ear.

But here it is again! Plop. Plop.

I go to the bathroom, and I locate the source, behind my ear, or so it seems, but everytime I wipe it away, it reappears. I am thinking, already, of my wife's advice that I have ignored, and knowing that I cannot let her know this is happening, that I think, ironically enough, that I have real blood on Halloween night. But I would rather be wrong than dead, so I walk out to the kitchen and say, Corrine, can you look at this?

She does. To her credit, she only makes one "I told you so" remark. We (she) do some things to fix it and finally just bandage the ear. Turns out my old mask got me one more time.

That is irony. In my land.

I couldn't wear my mask anymore, and that is probably a good thing. It was prohibiting drinking anyway. Beyond that, I hate the danged thing.

The party went very well after that. A young lady came in with a kid I once coached in soccer (and ran him out of the sport altogether :)) and she was dressed provocatively in a little Bo Peep or Raggedy Anne costume, and I kept telling her her shoes were untied, hoping that she would bend over. She caught on to me immediately, of course, but eventually, thinking she was fooling me, bent over front facing me, not realizing what I could see THAT way :).

I am sick. I admit it :).

My friends were there.

Most of them.

I don't know what to do with the mask.

It can still bring tears to my eyes, just to look at the danged thing. I should probably throw it away, but the real Halloween is only a week away, and now it is REALLY scary.

Not as scary, of course, as what will happen if Little Bo Peep takes me up on my offer to fly off to Mexico together :).

I'll deal with that when it happens. :)

TereB
Posts: 288
Joined: May 2003

Hey Soccerfreaks,

I don't know whether to cry or to laugh. In any event, your story made me think about myself.

I didn't stay away from people at first because of my kids who where very young then. When my daughter was in preschool, I went to pick her up, my face was still very swollen and one little kid asked me what had happened to my face. Before I had a chance to say anything, my daughter who was four at the time, caressed my face and said, "She just had a little surgery." It was my kids who taught me that appearance was not as important as I thought it was and there is life after horrible surgeries and treatments. I had the help of a psychiatrist who helped me get my life back.

What I thought after reading your story is that sometime, perhaps in the last five years, I have lost interest in a social life. I don't know what happened, perhaps it is because I am sicker than before, at least with a lot less energy. Your posting has given me a lot to think about.

A little advise. If you have bad memories associated with the radiation mask, why keep it? As long as you have it around it will be a reminder, so get rid of it. Also why keep something that is like a Chucky doll? I hate Chucky. I never had mine. I never asked for it, didn't even know I could have kept it and I know I didn't want it. I hated that mask and I hated being screwed down to the table.

I am not sure if your Halloween story is meant to be a joke or if you are just sharing your feelings. It is a good story, you are a good writer. Give yourself time to sort all of this in your head and if you feel you may need some professional help, by all means do it. It works.

I will not be going to a Halloween party but I am dressing up as a witch and will dress the cats too (after a big battle). My husband will take pictures of me with my cauldron, casting spells, etc. Hope it looks scary.

Have a Happy Halloween, my friend.

Tere

soccerfreaks's picture
soccerfreaks
Posts: 2801
Joined: Sep 2006

Thank you, Tere, for your usual astute comments. The fact is, the piece was truth wrapped up in an attempt at humor, or the other way around, and was really intended only for my blog thing on here, but I somehow put it here as well.

Regardless, I hope you have a great time with your Halloween, and with the cats dressed up :). (I do not blame your hub for his reticence with respect to this project :)).

As for the other stuff, the therapy and the mask and so forth, I am pursuing some avenues re the anxiety issue, as indicated, and I will be just fine. And the mask, well, I am still ambivalent about it: is it a trophy or a tragic reminder. Sort of like keeping the jaws of the shark that tried to eat you, I guess :).

Take care, my sweet friend,

Joe

BugHunter's picture
BugHunter
Posts: 152
Joined: Oct 2007

The only problem (um, only....right bill)I had as far as being social during and after is being no longer viewed as myself but rather as "that guy with cancer". Hey people, I am the same goofy person you thought I was last week before I found out. It hit me hardest when I got a simpathy/get well card from everyone at one of our other properties. I knew then I was seen as "that guy" and no longer as me. It was then and there I decided that cancer would have to fit into MY life and I was not going to make my life all about the cancer. That allowed, hell, it challenged me to work through it as long as I possibly could and do all I could to keep my life as "normal" as I could.
In the end, I can honestly say that my cancer has been a blessing in my life. I have met some down right amazing people, have yet to find my boundries, lost some much needed weight (not a diet I would reccomend, lol) and have a whole new focus on life. Yes, it sucked to go through and would not wish on anyone, but it is what we make of it, not what it makes of us!

BILL

MLC53's picture
MLC53
Posts: 109
Joined: Sep 2007

Hey Bill!
Good to see you are still active on the boards! I still pop in once in a while myself.
Marie

TereB
Posts: 288
Joined: May 2003

Hey Bill,

You are so right, Bill, there is life after cancer!! My priorities have changed but in many ways I am still the same person I've always been, perhaps with a lot less energy and a bigger sense of humor, he, he. I also feel free to be myself all the time and to enjoy life even if sometimes what I do seems a little wacky. I am lucky that my husband and kids have accepted my wacky part. My cancer has also changed my immediate family some, they are more relaxed about me and have learned to find humor and something positive in bad situations.

I think some people look at me and feel sorry even if they do not say anything. I really do not look that bad... honest!! It's just the ones that know about my cancer. I no longer pay attention to that. Cancer is not the most important thing in my life and even though there is no cure for me, that doesn't mean I cannot have fun and enjoy life.

I wish I didn't have all the tumors I have, that I didn't have a rare cancer but at the same time I feel that it was sort of like a blessing because of all the things I have learned, because it renewed my faith in God, because I see life with different eyes and I think I enjoy it more since I learned to appreciate many things I had taken for granted.

I leave you with something from the Cancer Crusade that I like very much.

Keep well!
Tere

Survivor

I have cancer but cancer does not have me.
Cancer is not who I am.
It is only a bend in the road that is my life's journey...
an unexpected detour on my path.

It is a lesson in the cosmic schoolroom that is human existance.
So I will pause to rest...
and heal...
and study the lesson...
before I move on to my life beyong cancer.

I will not give in to fear
and I will not be discouraged by setbacks;
setbacks are only opportunities to review the lessons.
I will not be ashamed of my scars.
My scars are the brushstrokes in the masterpiece that is my life.

I will be thankful for the many blessings cancer has brought into my life:
people I would never have known,
love that I have never been still or quiet enough to witness,
humility I needed,
strength I thought I had lost,
courage I never knew I had.

I will remember that I can still have fun
and that it is okay, even healthy, to be silly.
I will remember that to find joy in rainbows...
I must endure the rain.

I will remember always that while I may have cancer,
cancer does NOT have me.

dedesert's picture
dedesert
Posts: 17
Joined: Aug 2008

We have beaten this..as of today...Who knows what tomorrow may bring , but for today we all still live are "cancer free" and are bonafide survivors.

Be proud live happily, be gay ( as in happy) and represent survivors all over the world proudly.

Mark

BugHunter's picture
BugHunter
Posts: 152
Joined: Oct 2007

It still seems odd to me to run into another H&N cancer survivor. Even though our freinds and family know what we went through, when we meet each other in person there just seems to be a knowing little nod or wink that only "we" can know. We automatically know just how strong that person is to have taken that walk through our little corner of Hell and got out before the devil knew we were there! Yep, my fellow survivors are my heros!!!(as are the caregivers!!!)

BILL

bany
Posts: 38
Joined: Jun 2008

thank you for posting this tere, it's the most poignant thing i've ever read.

it's always easier to face everything life throws at you with humour =]

happy halloween!

elaine

hunpot's picture
hunpot
Posts: 90
Joined: Nov 2008

soccerfreaks- i dont know where to begin but my mom only came on here few times and i remember her saying your name and how you helped her with support and information.
She had stage 4 laryngeal squamous cell carcinoma cancer from massachusetts. She was diagnosed in March 07 went through extensive radiation and got severly burned ended in hospital for 3 weeks and had to stop treatments. in Oct 07 partial laryngectomy major surgery 22 hrs and removal of half voice box and ALL lympth nodes. In JAn 08 found out cancer was back and had spread to both lungs. In april 08 we tried chemo till June chemo wasnt working all treatments came to an end she sadly passed on August 18th aftre 3 days of going to nursing facility. I swear they made her worse being there because she was fine up until the day before all of a SUDDEN got a call saying she wastn gonna make it through the night (no preparedness)
anyway Im having real hard times now with her my best friend gone so i came on here to see if i could find any of her questions or information (name)and see what support i could find. Im not sure what name she used on here it could have been Kandee or Fancyface she was a 58 yr old woman from Mass does that ring a bell? I remember coming on here when she first got diagnosed and posted few simple questions about what to expect for treatments etc.. and you did respond to a few then she would go on for support herself when us children werent around and i remember her liking you alot for your support and she had faith in what you said she would always tell me go on and ask soccerfreaks he knows:) So i just wanted to say thank you for your kind words and encouragment on here i know you helped my mom . It is so hard to go on with out herand i Am having such a terrible time these days i cant seem to stop crying it must be reality setting in that she isnt here in person i know her spirit but it doesnt help she was so young and shouldnt have been taken away but cant change iot just have to find a way to cope. If you have her listed as one of your friends maybe or any inof past links that you could find or remember that would be great for me to see and read for remembrance. thanky ou for your time and i hope you continue to fight and have a longggg life ahead of you because you seem to be an inspiration to all on this forum.
tracy

soccerfreaks's picture
soccerfreaks
Posts: 2801
Joined: Sep 2006

Tracy I am saddened to hear of your loss and of your mom's passing. I am also deeply humbled by your very gracious words. You cannot imagine what they mean to me.

In the meantime, I think you are going to run into some problems with your search. To begin with, I have the memory of a steel sieve :). More important, when they moved to the new site they got rid of all of our old correspondence, which I saved religiously, as did many others. They say they are bringing it back, but it has been many months, and we have seen no movement in that direction.

And, at some point I got rid of the friends' list I had, considering that such a list could never include everyone that I have come to consider a friend here, and therefore would only be a negative sort of thing. I have not created one since.

I do not remember a FancyFace, but do indeed remember a Kandee. If she was from Mass, I am sure we talked about where she lived, because I was once stationed at Hanscom AFB, at the confluence of Lexington, Bedford and Concord, and really enjoyed my time there. And, of course, I am sure we were able to talk about some of the things she might expect along the road to hoped for recovery.

Unfortunately, I have looked for Kandee in the Member Search area and nothing comes up. In the old days you could enter a partial name and it would list all those that were similar. This site no longer does that. But I will take some time and try to find her site. Maybe there are some late posts there, some photos, maybe some of her own expressions, poetry and so on. I now know how to contact you as hunpot on here, and will do so if I find anything of use.

Again, I am sorry for your loss, and wish you the best. I am also very humbled that I might have had a positive impact, at least briefly, and thank you for passing that along.

Take care,

Joe

Christmas
Posts: 91
Joined: May 2005

This thread is so beautiful! Thank you all for your postings. It's wonderful to know that you're all out there dealing with this "cancer" thing, and that we're all survivors. Even after five years, I'm dealing with the post-treatment problems. I'm fortunate that I can still work, and I enjoy my job. But every once in a while, I get tired of dealing with "problems".

I kept my mask. I think that my husband put it away somewhere. I forgot that I even have it. Yep, I can blame the cancer for my poor memory. I also blame the cancer for my bad moods. It's kind of handy to have an excuse.

Thanks all, for helping lift my spirits.

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