Living With Cancer (LONG)

[TN Belle]

Okay, a little background. I was diagnosed with an inoperable cancerous brain tumor in October and had minor brain surgery to do a needle biopsy of it. I have had six weeks of radiation to my head and six weeks of pill form chemo. I am currently in another six week healing period until we get a MRI scan on Feb 4 to see if the treatments had any affect at all.

I'm feeling just fine, back to 40 hours at work, and slowly regaining mental and physical strength. I can't wait to get off the steroids, I have gained 15 pounds in the past 8 weeks and nothing fits anymore. I don't want to buy new clothes cause they say the weight will come off when I stop taking them, but it's miserable and embarassing to squeeze into jeans that make the side seams thread show down your thighs and I don't button the tops, which requires loose and long shirts to cover up, which I don't very many. I have one of those velvet "jogging" suits that I love the elastic pants in them, but I really shouldn't wear more than once a week to work, which allows me to dress however I want to (everyone, not just me). I have to look nice, business casual with jeans, but with limits (no boobs, no belly, no butts showing and no lettering).

It's scary to think how unreceptive I was to the whole cancer issue until now, that or I am just that much more sensitive to it. Now I can't help but hear and see stories and issues and news from every different direction all day long and it sucks. Especially when ya have to "compete" with cancers, with prostate, breast, and lung cancer awareness being shoved in your face. What about mine? I still have a partial head of hair and my eyelashes and eyebrows, so the scarf or hat on my head looks more like an accesory rather than a cover up. So I must be lying or am healed cause you can see hair. It's so frustrating, like 50/50, I want to stand strong and continue my life, but I need people to be sensitive simply because I am not who I was before either. And without looking sickly and apparantly hairless, I must be fine. They don't understand why I can't pick up heavy stuff, or bend over, or shop all day, or avoid stairs, or clean house even. I am not looking for sympathy, just sensitivity and to understand, not assume anything. I find it difficult to concentrate on work and ask questions all the time, too many I am afraid, I try to keep notes, but sometimes I don't understand them either. My cognitive skills are/were affected, so I am afraid of how much longer they will keep me. No one has said anything (to my face anyways), I hope it's just my own guilty conscience, but it's aggrivating to my co-workers I am sure. Someone actually accused me of being proud that I have cancer and am trying to flaunt it. WHAT??!! Are you serious? I was so furious, just because I am open about it and need to talk to people, doesn't mean I am bragging. That's the problem, how can I avoid the stares and snickers without being open and blunt. Take this very post for instance, it's so hard to type rather than just talk with emotions, but it's so hard to explain and I want it to come across correctly. My mother-in-law has ovarian cancer and has been battling it for three years now. This has really drawn us closer, but I have a kind of "survivors guilt", because I still can't relate to how bad her cancer is or how bad her chemo is or even her life expectancy. Yes we both have cancer, but the stories couldn't be any more different or comparative. Because mine is so rare, there is no one to share experiences with, like a support group. I can go to other cancer groups, but as this whole post points out, I can't relate to any of them. There are cancers that are alot worse than mine in the same position of no awareness or support either. What about all of the kids cancers programs, St Jude, Miracle Netowrk, Make a Wish, Give Kids the World. I am not saying they are bad, but the adults in this world with just as devastating prognosis just have to watch their families, lives, and dreams die with them, unless they have a wealthy uncle somewhere. Before I get flamed about the kids, I support these programs whole heartedly, volunteered at some through the years, even riding programs. Just never thought I would be on the other side with them and then be too old or not sick enough to qualify. Which is a blessing really, I am just stuck in the middle, not healty, but not dying (that I know of) either.

If you are a movie fan, I advise caution when seeing "PS I Love You" AND "The Bucket List" as both movies are great but at least I am extremely sensitive with the brain tumor issue at the moment (which I didn't know what these people suffered from until I saw it). Went through kleenex and napkins at each one. Of course I don't have the money or friends to take me on a world tour, so that's depressing too. I keep thinking or wishing "romantically" that things like that would happen, but that's Hollywood for ya, pump up your fairytales only to be deflated in real life. I tend to think "this could be my last ...." but then I am not allowed to say it cause it will show I have lost faith. As hubby and mom tell me, we could all die today and then no one could say anything or plan anything either, that the playing field is even. I haven't lost all faith, I am just taking it a day at a time. The worry is gone, won't help any and the research is done, nothing new. Now I am trying to just live, as normal as possible,and as much as people will allow me.

Sorry and Thank You Too!

 

[minie812]

Reading your post just makes me realize how fortunate I am. I agree that their is not enough financial help for someone Adult with cancer. Our farrier's wife has inoperatable brain ca and it is so hard for him (work and support her) He is so devoted to her. John and I have been kinda his retreat I guess. He will talk about his feelings for her and how lucky a man he is to have her...and then he cries. Then he apologizes ( no need to...I worked in hospice for 12 years) I cannot even imagine going thru everyday worrying like that, but my prayers are with you and remember you have alot of folks here that do care!

 

[nootka]

I can't really add anything helpful, only that I feel that many people are so afraid of what you are going through, that they have to distance you or ostracize you because they are, in essence, doing so to their fears. It is more about them than it is about you. Kind of like when we were kids, and afraid of change, afraid of different, so we bullied, or teased, or just plain shunned. Not all of us are this way, though.

I hope you realize that your very personal experience, situation, will be just that. Even similar types of cancer can be radically different from person to person. I don't think you're doing anything at all wrong, but I do hope you will also do everything you need to in order to feel even a smidge better.

I'm sorry that people are so narrow-minded, but I think it will always be thus.

It must be awful to live with the extra fears you have to, in addition to feeling badly. I hope that your treatments result in a full recovery, as much as hoped and more.

You are certainly aware of how precious health and life is. I'm sorry you had to have this experience.

(((hugs)))

I do admire you, though....

Liz

 

[Sonya]

All I can say is ((HUGS))...unless someone has actually gone through what you are going through I'm sure we can't totally understand. There is nothing we can say to help you, but we can listen...and I for one will always listen. You are very brave and strong and I think about you often...hang in there!

 

[Charlene]

bless you. i cannot know what you are going through because i have not suffered. however, i cared for the love of my life for 21 months and i watched him go through good times, great times, bad times, sad times, horrible times. i can relate a little to your plight because gary had kidney cancer, a relatively rare form of the disease.

because gary never lost his hair, people assumed the chemo was a walk in the park and that he would soon be cured. outside of family, they really were clueless.

although you cannot find much in the way of support groups, and we were in the same situation because of the rarity of gary's cancer, your family and your closest friends will be your best support. open up to them when you can. let them KNOW how you feel. write letters. sometimes it's easier to put your thoughts down on paper. give those letters to the people who mean the most to you. or, write them and then burn them. either way, it will help you cope.

try your very best to keep a positive attitude. i know gary's attitude got him through a lot of misery and it helped ME cope. if you feel the need to scream, DO IT. if you feel you need to cry, DO IT. do whatEVER it takes to make YOU feel better.

when it comes right down to it, other people outside of family don't matter. you will surely find out who your true friends are as you go through this journey. i know how agonizing it is to wait for scans and to pray till you are ready to burst that you will get good reports.

you will be in my thoughts and prayers. stay strong and remember, you aren't in this alone. come here and vent or come here and ask for hugs and prayers. i can guarantee you, from personal experience, that you will get all you could want right here at LB!!!

 

[bfogg]

In reading your post I have to say it brought home how lucky I am.

I also would like to say that to me, you have the right to feel anyway you want to feel. You should not have to feel like you need to justify any of your feelings.

It would seem to me a little like grieving, everyone does it in his or hers own way and that way is right for them

, there is no right or wrong way to feel.

How could anyone know how they would react if they were in your position?

I would think I would go from scared as heck to mad as heck, to sad as heck and so glad to be alive! But then you still have to make a living and deal with everyday stuff!

Whew! To me if you even get out of bed in the morning you should be considered a hero

.

I think you need someone to talk with on a regular basis who does not have an axe to grind in any way.

Could you see a counselor JUST FOR YOU!

Someone who has the knowledge to guide you and to validate who and what you need in order to get thru this life altering situation?

Even a good good friend does not have the objectivity that you need right now.

It seems to me that everything you are thinking would make sense to someone going thru what you are.

I really admire you as well, and you need to have someplace to go where you will be validated and made to feel good for the person that you are!

Not the person someone not in your situation thinks you should be.

Please find that place or person and don't give up until you do.

Don't let anyone make you feel bad guilty or small.

If myself or them had been thru what you have been thru we couldn't probably find our own car in our own darn garage!!!

Hang in there and hold your head up high!

Bonnie

 

[Equuisize]

Mistie, your post just tugs at my heart strings.

I believe many of your observations to be astute.

We've lost family members to cancer, have one case

that appears to be cured and I believe exactly what

you are saying.....we have no clue, no matter, how

close you are to knowing what each member is or

has gone thru.....

I know that no matter how normal a day seems,

the worry cannot ever be far from your consiousness.

We've got broad shoulders here, a lot of empathy and

good hearing.......hope we can all support you thru this.

Keep taking good care of you!

 

[Marty]

What a powerful post from you Misty.

One step at a time. One day at a time.

You are not giving yourself enough credit.

First and foremost, you are stunningly gorgeous inside and out. I know it and everyone that knows you knows it. That doesn't change. Don't worry about an extra 15 pounds for petes sakes girlfriend I know you wear it well! You could gain 40 lbs and still look wonderful! You're a knock out!

I couldn't even imagine going through what you do and still holding down a full time job so you are so much stronger than you give yourself credit for. I'm still inching myself back to work part time and that is a huge chore for me. Keeping myself together without meds and going through just one day of not having a breakdown hasn't happened for me yet, so who's the strong one now? You are!

Come on Misty, lighten up on yourself. You've already come so far.

You will make it all the way with a little help from your friends as John Lennon would say.

I have an idea for you:

You say there is no support group for what you have.

Why not start one?

Do google searches and talk to the nursing staff etc.

Reach out for others that have what you have and find them.

I do a lot with MADD and we meet online several times a month sometimes and on the phones etc.

You can set something like that up online too.

There are others out there that have things that are rare; bring them together with yourself.

Go forth and conquer Misty. You can do this.

Much love and Dan says to give you big hugs from him ((((((( )))))) (Oh, he's over 6'1 now so make that HUGE hugs)

 

[h2t99]

I can not even begin to understand what you are going through, but I will say stay strong and try not to let what others say or think affect you. Your true friends will be there for you and we the forum are some of your true friends, so use us!! We will not judge you, we will cheer you and help to keep your spirits up. We will be there any time of day. Hang in there!!

 

[Charley]

"Hugs" to you! I read your post with tears in my eyes.

All I can say is keep being you, take things one day at a time, and confide in those closest to you and those not as close. Let others share in carrying this and don't deny your feelings. Sometimes it just helps to express your thoughts and know that others are listening. Keep on reaching out and keep on listening to yourself and also confide to the doctors how you are feeling. {{{{Hugs}}}}

 

[RJRMINIS]

[SIZE=12pt]{{{HUGS}}} I know it is a journey nobody wants to ever have to go through, and I feel for everything you have been through and are going through. My daughter was diagnosed with cancer at 18 months and we spent almost a whole year in the hospital, with all the treatments she went through, really took it's toll on our family. I know sometimes people don't understand, I thank god she is doing well and is today a healthy 9 year old, but the scare is always there.[/SIZE]

[SIZE=12pt]I just lost my cousin to colon cancer, he left behing a wife and 6 kids.... I cannot tell you how mad it makes me, and how unfair. When I worked in the Nursing Home after my daughter was better, and took care of some of the people fighting cancer, my heart ached for them. Maybe I didn't know how it made them feel since I have never had the treatments, but I watch what they did to my little girl, and I just felt so much compassion for them....more so than someone that had no idea what the meds do to you.[/SIZE]

[SIZE=12pt]I think alot of people don't know what to say, so they don't say anything....[/SIZE]

[SIZE=12pt]I understand about the "guilty" feelings, Although I was so happy my daughter responed to the treatments and even though there where some very scarey moments, she survived, I was friends with alot of mothers who's babies did not respond to the treatments, I felt so guilty because some of them lost their babies, while I still had mine, my heart ached for them, but then I still was thankful that my little one was ok..it is feelings you are not sure how to handle. I wish you the best....if you ever need to talk feel free to PM or email me...I know there are support groups online as well, but as always all of us here are always ready to listen and offer our support!

[/SIZE]

 

[Davie]

Mistie, Don't worry about what others think. Concentrate on you and getting better.

I went through something similiar to what your co-worked are acting when I had my first round with breast cancer. But I must also say I had an extremely supportive boss and some co-workers. When I returned to work on a part time basis there were days that I dragged myself in--my boss would look at me and say OK you have put in your 1/2 day (even though I had just arrived) and call his girlfriend at home and ask him to take me home.

My first cancer treatment was a real doozy. Surgery, 4 regular chemo treatments, the a 21-day stay in the hospital in isolation doing a stem cell transplant and then 30 days of radiation. Then just 3 months shy of my 9 year anniversary I found a lump in the remaining breast and did not hesitate to get on the cancer wagon again.

The second time around we caught the tumor early--it was not related in any shape or form to the cancer I had before and this time no lymph nodes were involved so just to be on the safe side another 4 rounds of chemo and the loss of my hair for a second time.

I'm now out again almost 2 years--in March.

I can relate somewhat to what you are going through but as some people have said each case is different. It is time to only think about taking care of yourself and not what other people think.

If you need to talk just drop me a PM and I'll be glad to listen.

I just lost my cousin to cervical cancer last week and she was just 40 years old and left behind 2 sons, one of which is just 9 months old.

Davie

 

[Basketmiss]

I think people are so scared of their own mortality that they dont want to talk about it!

Some people dont know how to cope with someone in need.

They think if they dont talk to you then they dont have to worry. But they are worrying inside and scared.

From what I have read You are a very strong woman! I cant believe you are working 40 hours a week, but I'm sure you are glad to do it to have something to keep you busy, instead of worrying...

I am sorry there arent more to understand what you are going thru by its rarity but like Marty says , start a support group for people like you and Charlene's Gary who's was also a rare form of cancer..

Keep a positive attutude- that IS having Faith.

We are here to listen when you need a sounding board...

 

[Jill]

Your post was very moving and thought provoking. You continue to be in my thoughts and prayers. I wish I knew some magic advice or wisdom. I don't, other than to know how much the people here do care.

 

[tshack]

LIek everyoen else I'll offer hugs. I'm sorry your having ot go through it! I los tmy father to Lung cancer last year and honestly the C word in any form is poison to me.

From your post you sound liek a strong lady. Don't ever give up that strength. IF you want to be mad get mad, rant, rave, raise heck. Just don't ever let yourself fall into that deep hole. It sounds liek your beating this thing, and that's great!

I can understand your mad that others with other forms get more recognition, and that others who have no hair or can't work get it also. Again if you want ot get mad get mad, it's all good and healthy to let it out! But just htink of this one thing, be thankful that you do have a bit of hair left-shoot celbrate the fact by doing something new with it,Call it my 'I'm beating cancers butt do". LOL, enjoy going out and finding some new duds, if you loose the weight well there's always ebay to recoup your costs! Now don't confuse being thankful with not being able to be acknowedlged, cause yes you are a c paitient and that in itself make you fall into the catergory, but BE glad that it's not any worse than it coudl be. KWIM??? We've had a hellacious month in this house, actually a hellous 6 months, that started with DH breaking his back in a horse fall, and has ended with us loosing 3 greatly loved animals this month. Yeah I could sit and be peeved and think, no one else goes through this, or why me, but a good peice of advice I got a long time ago, is to be thankful for what you have, becuase NO MATTER how bad it seems there is always someone around the corner that has it worse. I knwo I've applied that to my life over several instances when bad things have happened here, from me being diagnosed with cervical cancer to our trying times ttcing our son, you'd be surprised how it helps honestly! I hope all this is making sense and doesn't sound horrible and rude becuase it's not meant to be that way!

I wish there was somthing else I could do to help, but all I can offer is a hug, so I'll send you one!!!!

 

[Sandy S.]

You are a very brave women. One of my very good friends and co-workers had a brain tumor. I won't go into details.

But if anyone wants a good forum this covers most cancers and it has separate forums for each one.

http://cancerforums.net/viewforum.php?f=23...031e26d0c71f9a8

 

[RobinRTrueJoy]

I wish I could be there and give you a big hug.

This is a very difficult journey that you are on.

Marty's idea about starting a support group for people with the same health issues would be good. I bet you could do it easily on line, start up something like the forum here, and gosh it could grow from there. There are others just like you looking for support.

I have been fortunate. I had breast cancer in 1990 for my 36th birthday. I was able to hide under sweat shirts. Its easy that way when you are not looking different. Its easier to pretend that things are ok.

In a way, you should be proud. You are a survivor. You have been fighting battles that hopefully those idiots in work will never have to fight. You are "ROCKY"! Some people might just throw in the towel, but you haven't, you are a fighter. Keep fighting!!!!

Is there any chance there is a friend in work that is a size larger than you that can lend you or give you a few "hand me downs" for work? I was lucky, my sisters helped me out with clothes.

Maybe even on the forum, if you would post what size you would NEED, we could send you a few things, if we are that size??

I know that it must not be easy seeing all the special ribbons remembering different cancers. It can't be easy seeing monies go to other cancer research. Try to hold onto the fact that if just one researcher, no matter what the cancer research is done for, finds out one answer, it can possibly help us all.

Hold you head up, smile as often as you can, even if you don't mean it because sometimes just smiling makes you actually feel better.

I understand about survivors guilt. I feel it a lot.

Try to invision this... that while you receive every treatment, every pill for cancer, a tiny army is fighting inside for you. The army is working for you,killing off the bad guy.

GREAT BIG<HUGE<GIGANTIC HUGS for you, hon!!!

love,

a survivor too,

Robin

 

[Cedar Ridge Farm]

Mistie,

You already know how I feel about you and your cancer....

I do not know why I have never mentioned this sight to you. Maybe you already have it, but anyway....

www.abta.org This is the official sight for the American Brain Tumor Association. They have good info and they gave me numbers to call to see if I could get help with my own surgery. They have a listing for support groups.

Love ya girl..

Peggy

 

[TN Belle]

THANK YOU for the suggestions and support, they are very much appreciated, I wasn't expecting much, just needed to vent somewhere that won't give me the same roll of the eyes or the same speech. Having read my post again just now, I didn't realize what a pity party I had this morning. It all comes and goes and it doesn't take much to get one started. I am aware that there are so many worse stories than mine, and I don't even have results yet, so no true prognosis to dwell on either. Thank you for listening (or reading in this case). I just needed to know somebody out there cares, other than the family and friends that "have" to.

Sorry too if I don't reply to posts very often, I feel guilty over that too. When I need this group, ya'll are there and I don't return many favors by posting on other peoples needs. It's made me appreciate every one so much that ya'll don't care how well we know eachother, just help when you can. I am not really a big internet person and this is the only forum I know. I have observed for so long, I feel like I know most of you.

 

[Scoopiedoo]

Mistie....where do I begin?? First of all, everything you are feeling IS justified and PLEASE don't beat yourself up with survivor guilt. I can't say that I know what you're going through, I have never been there. That said, I do work in an oncology infusion clinic, and I meet people, everyday, who like you are going through the frustrations that any type of CA brings with it. Some of the frustrations you describe are specific to your type of cancer, and that is TOTALLY understandable. There are certain types of CA that get more recognition than others simply because more people are afflicted by those types, but where does that leave you--or the others like you-- who have a more rare form of cancer?? I agree that it stinks on ice! HUGS

However, a lot of what I read in what you wrote are things I hear on a daily basis. Your co-workers are idiots, but in some perverse way, they are in their own world of denial. "If she has hair, she can't have cancer, if she's gaining weight, she can't have cancer, etc..." It's ignorance and I'm not attacking their character, it's true ignorance--they just don't know. People have this image in their heads of what a cancer pt. "should" look like and if you don't fit that image that we've all seen, on tv, in movies, etc...then it just can't be so. Hello MORONS!!!! People that have had minimal exposure to the facts about chemotherapy just don't understand that NOT all types of chemo make you lose your hair. Further, I am guessing that most of them have not had to live with/through what you're going through so they would have NO idea what it's like and absolutely have NO right to pass judgement or say things about you. The HE*& with them. So what you have to ask! It's a miracle that you're still here to ask, Thank God that you are!! You are AMAZING, don't forget that!!

If they're making comments to you or about you, whip your hat off and ask them about the half of your hair that's missing, come up with some wisea** comments to shoot back with when someone has something to say. When you need to avoid stairs, or lifting, or anything else for that matter, tell them, "Sorry, I can't, the doctor says ......." just something totally wise crackin to shut their mouths.

And I think Marty's idea about maybe starting your own support group is a GREAT one. Since your cancer is rare, maybe you won't find anyone with your specific type of cancer, but you will probably run into many that are equally as frustrated, for many of the same reasons that you are.

MOST IMPORTANTLY, take care of YOU!! Do what's best for YOU!!! YOU are what matters the most. Your strength is amazing to me. You are strong and brave and wonderful, don't let anyone tell you anything different! Hang in there and feel free to vent here as often as you wish!

HUGS and HOPE for your journey...

Jodi