fml...advice please people who have delt with hair loss/problems

hey so i had a brain tumor, medullablastoma, and i had to have surgey to remove the tumor, a drain out of the back of my head and chemo and radiation. the initial surgery left a scar prolly 6" long down the middle of my head and onto my neck as well as a huge hole in the back of my skull where the drain was. so not only do i have these two ugly scars that cause hairloss, but from the radiation and chemo, i lost my hair and basically the cell in my skin were zapped in certain targeted areas so i have no hair growing there. i just graduated senior year of high school and have delt with this friek hair problem since i can remember, in 6th grade id have to go to school wearing dozens of bobby pins and barrets and this year i would sometime stay home from school becaus my hairloss "looked" apparent. its really mor detailed than that but basically my hair splits from the top of my head and down the middle like a big curtain exposing my entire bald and scarred skull underneath. i get sooooooooo pissed at this and i have no f*&^%$# clue wat to do about it??? anyone have absolutely one ounce of advice they can give me??? im 18 and im going off to college in agust and a new state new people new places and i know i survived and im healthy but im really mad that i have to look at it this way and not "fit in" with other people who have long thick beautiful hair??????? any advice at all???

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  • cali, your frustration is not lost on most people here. when I was told I had tongue cancer, I didn't imagine there would be much of a physical appearance impact. I figured they would just snip out the bad part and we would call it a day. well, turns out they had to take so much of my tongue out that they had to reconstruct it with tissue from my forearm in order for me to be able to speak/eat "normally". This left a scar that goes from my inner elbow down to my wrist and is anything but rugged and handsome. They also went into my neck to remove lymph nodes which left a 4" scar that resembles a something that would result from making some bad bets with the mob. I'm a 28 year old guy and I have issues with my appearance and speech as a result of my surgeries, so I can imagine that this would be a really tough time for you being a young gal on your way to college. I know none of this is of any practical help to your specific situation, as I have my head shaved and keep my hair relatively short, but I just wanted to sympathize with your plight. Hopefully one of the wonderful gals on this site will have some good advice for you.
  • RaeLeahRaeLeah Community Member
    Hey there,

    I'm also 18 and I lost my hair during high school, so I can relate. I loved my hair; it was a part of my identity and I'm also really girly, so I loved having it long. I'm sorry you're going through a tough time with it right now, and I can understand wanting to feel great about yourself when heading off to university (Congrats on that, by the way!)

    Have you considered getting a wig? They have beautiful wigs for people who have suffered because of cancer and if you want to have long hair it's a great option. They have wigs made of both artificial and real hair, with pros and cons to both of them, but they look very realistic and I highly doubt that people would even be able to tell that you are wearing a wig! When I lost my hair in high school I wore a wig that was around the same colour to my old hair and people thought I had just got a hair cut.

    Another thing you might want to try are extensions if you are only missing hair in certain areas of your head. I can't really give you my opinion on them because I've never used them before, but you should definitely talk to a professional hairdresser who has dealt with cancer patients and ask about things that you can use to make your hair look fuller.

    During the summer wigs can sometimes get hot, so another alternative to looking stylish is to find some really cute hats or bandanas. Large sunhats are super cute, not to mention they'll offer some protection for your face from the sun.

    Lastly, I know it can be really tough dealing with hair issues, but sometimes all it takes is some awesome clothes or wearing some fun makeup to make you feel better. Just don't forget that you are beautiful, whether you have hair or not. I know it sounds cliché, but confidence is all you really need to "fit in". Or some red lipstick. ;P Throw on red lipstick and strut like a diva. Haha.
  • caligalcaligal Community Member
    thanks for the reply. ya the scars on my head and stuff have sorta just impacted me more in a visual manner, i i have definately had some visual as well as physical/mobility problems with the scar thats under my collarbone from my portocath that i had inserted and also removed. on a good day i can move my arm around and move my shoulder and act "normally" with it, but others, like right now actually, i can hardly move because of it. not only that but its not too appealing when its visible through a shirt, or my strapless prom dress that i just recent wore, hahaha but my friends see it as a "symbol" of what i went through and my strength so that what i try and get out of most of this stuff that all of us just must certainly and have to deal with, it hard alot of the times but atleast wer fortunate enough to be sitting here and on the computer typin away :) :) :)
  • summooresummoore Community Member
    The extension thing is a really good idea! If you have heair around your scar, they can weave it in. It's worth talking to someone about.
  • Some female survivors like to rock the shaved look, and that's cool. You can still look beautiful that way. Of course, I can't promise that everyone (especially those who don't understand cancer) will agree. As mentioned there are lots of wigs out there, and the volunteers at your cancer hospital might be able to help you out there.

    You can also get very stylish with various hats and head wraps and things like that. I had spotty hair loss from chemo and I wore hats.
  • (hugs) I feel for you so much. It's hard to move on with life I'm sure. If I were you I'd wear hats, scarves, or talk to your cancer center about helping with a good wig! Ours does that for women. My husband went through brain surgery also... and radiation. But as a man I know it's different and also he was bald on top...radiation and scar on the side where some of his hair was...He acts like it doesn't bother him, but he has shaved his head for years and now fears his lumps from surgery and scar will look scary or strange or whatever to others.... You have options and just start asking your Dr.s office to help you, or see if there is some store available...good luck...and I appreciate how hard it is for you...I'm sure you are beautiful anyway! :)
  • melissamelissa Community Member
    I have a brain tumor and have had surgery, and radiation on my head. it destroyed my hair and scalp. for a while at least. it fell out in a really wierd pattern and looked absolutely....wierd.so i shaved most of it. except some on top, almost like a mohawk. then i dyed it purple and dared anyone to say anything about it. so far noone has said anything negative. quite the opposite, most people tell me that they always wanted to do something similar but never had the guts
    . I tried the wig thing and bought a few with very different styles to play with and create different personalities. When i wore them i always felt self consious, like everyone could tell it was a wig. But mostly i felt like i was ashamed and hiding. I didn't like that feeling at all.
    When i shaved my head, or 3/4 of it anyway, i was very depressed at first. i always had long beautiful hair and had attatched my sense of being female to my hair. I didnt even realize it until it was gone. I still get sad sometimes when i look in the mirror and all i seeis a female uncle fester from the aadams family...but then i put on a couple of cute barettes, some dangly earrings and some bright lipgloss and uncle fester dissappears.
    It seems like some of the hair the radiation destroyed is trying to come back now too. I dont know if it will all ever come back or not. honestly it probably won't. I am most likely going to need more surgery and treatment and will probably lose it all again. But i wear it (and the craniotomy scars) like trophies. i am kicking this things ass and i have the battle scars to prove it!

    Be proud of who you are and what you have done. You are awesome!!!!
  • i agree. the best thing you can do is be proud of who you are both inside and outside and try not to worry too much about what others think of you. I had a brain tumor fifteen years ago when I was five years old and i vividly remember the afternoon when i first realized i was losing my hair. I had no words to describe it.now looking back on it i would call it "helpless agony". Today my hair is very thin and parts kind of oddly because of my scar. sometimes stupid people like hair dressers or just idiots in general comment or ask me silly questions and it drives me up the wall, but i just keep telling myself that I am who I am and i look the way I look and all i can do is be me. it also took a while for me to come to this conclusion and is wasn't until i started college last year that i have really started to become comfortable with and face what happened 15 years ago and accept it all. basically its all a process of figuring out what is best for you and dont worry too much about "fitting in"
  • Caligal, one thing to keep in mind is that when you head off to college, a lot of the high school BS gets left behind. People will not be so quick to judge due to the lack of cliques. College is a time to reinvent yourself. I know its a pain in the ass, but try to stay positive. Try the wigs, try the hair extensions. Do whatever makes you feel comfortable, but most of all, do not worry about others perception of you. If they are quick to judge, screw 'em.

    Just own whatever you decide to do. Make it yours. Confidence goes a lot further than any natural hairstyle can take you.

    As a side note, I lost half my hair due to radiation so I've shaved it all off. I know this is easier for a man to pull off, but I've gotten more compliments and met more people because it's different and I'm not ashamed.