HI guys, I am sure I am not the only one who has found great problems after having Mouth & neck Cancer.
I am in remmision now 5 years but I am very weary of Consultants that say it good news when one of the people in our Cnacer group in remission nearly 5 years and its back !
It has caused me alot of problems over the years the worst thing I think is the way people look at me when out (no paranoia here) and they make wrong judgement that I am deaf, mute or even brain dead.
My speech is affected and this is a nightmare for me to be able to socialise and alot of my friends(the ones I have left) cannot understand
why this is such a big deal! Well when your reminded everytime you go out you have a disibility and people shout at you or total ignore you or do NOT listen is so frustrating.
One of many instances I went to buy a new Leather suite and took my mate with me incase of difficulty, I was asking the Salesman questions and he was answering to my friend as if I was not there, My mate said hes buying it NOT me but he kept doing it so even taking someone with you for moral support only makes it worse. I would like to know how others cope with these situations or do you just let other people do things for you so as not to get frustrated?

Paul

Hi Paul

Good to 'see' you.

I'm sorry to hear of the problems you are continuing to face with getting out and about and socialising/communicating.

I haven't been there myself, so can't help too much, but on the example of the leather suite - honestly? I'd have left and bought it elsewhere.

I did this over the summer when I bought a new car and the saleman told me that I should "check with my husband" before signing for it.

I'd love to but he died 2 years ago.

And because he was so patronising (not to mention chauvanistic), I left, drove to the dealership in the next town and bought one from there instead.

And I know it is easy to say, but it really is them who have the problem, not you. Although I can imagine that when the scenario is repeated day in day out, it is hard to maintain this perspective and you feel very demoralised.

I hope you get some good suggestions or advice.

And good to see you again, as I've not seen you around for a while.

Kezia

Paul,

I'm really sorry that you are sufferring from this sort of discrimmination. I think Keiza has the right attitude, but I think I would take it one step further. Leave the shop, and come back the next day, and buy the suite from a different salesman. They are all on commission, so hit them where it really hurts. The salesman will either loose his job, or loose his financial incentive. I walked away from a furniture shop yesterday, because the salesman was too pushy. When you are spending money, then you hold the upper hand.

I agree with Keiza that car salesmen can be a problem. I always take my husband with me as he is mechanically minded, but you can get a car checked out by the AA. About five years ago I was looking for a Rover, and there were loads on the market, so I didn't think it was too much to ask to specify that I wanted a blue one. This was not something that the salesmen related to, and they kept trying to sell my husband a green rover. Thankfully my husband knows me better, and would pass the salesmen back to me, saying 'you'll have to talk to my wife, she's the one buying the car'. Having said that I bought a new car last year, and the salesmen at two garages I went to were the best I've ever known. They weren't pushy, one let me have a test drive, and then gave me a card, didn't take my number, and said if I wan't more info to phone him. When I bought the car, they asked me how much I wanted to pay. So shop around, and pick a salesman who suits you.

I can personally recommend evening classes as a great way to get out of the house, meet new people and raise your self confidence. You shouldn't have to talk too much so long as you choose the right course. I took a course in patchwork and quilting, which is an inerest I had given up due to lack of time. It was good to get out and meet people who didn't judge me by my own standards, as I did not look myself four months after radiotherapy. I didn't wear any make-up as my skin was still too sensitive, and I had lost all the hair from the top of my ear down (radiotherapy) and a lot of the hair from the rest of my head (chemotherapy). I would have found it hard to socialise with old aquaintances at this time, although true friends I was sure would understand. It's really difficult for others as I think the shock they feel when they see the difference shows on their face, and because they just don't know the right words to say, but do try to take it in the right way, and realise it's just because they care.

I have been really lucky, and my speech has not been affected, I really don't know how I would cope, as I am a terrible chatterbox, and I have even been known to talk to inanimate objects. When people look at me in the street it's because they really do think I'm mad. Maybe I should wear a bluetooth headset all the time so that they think I'm on the phone.

This message has been edited. Last edited by: Jenni,

Hi Paul

I just have to comment on Jenni's remark about being a terrible chatterbox (which has absolutely nothing to do with your subject and of which I have nothing to add - but can only sympathise with your predicament).

She's posted 87 posts since registering on 13 October - I think we should believe her - Sorry Jenni - couldn't resist - no malice meant

Pete

Hi everyone,

I know just what you mean Paul about the communication problem, my speech is only very slightly affected but it has changed the way in which I now conduct myself in company. I always used to be the person who would chip in with witty one liners, but not now, I hate drawing attention to myself, I know I look slightly 'odd' around the mouth area and I see strangers looking at me and wndering just what it is.

In the course of my emploment I have to talk to people face to face, and when I see the puzzlement on their faces I tell them what has happened to me. This might be a bit extreme - but have you thought of carrying a wipe board with you when going out to buy something specific. I have found people mcre sympathetic when they know the reason why.

I don't suppose any of this is much help, talking on this forum is a good way to vent your frustrations.

Best regards

Rosie

Hi guiys, Thanks for all your comments and suggestions.

I want to be sen as normal but this is hard as even the Nurse at the Hospital said to me "Oh you can speak" I said yes and I can hear and one and one is three
I thought it was paranoia but my mates notice it more than me, I was on the subway talking to my friend facing him and he was waving to someone, I said "who you waving at" he said that woman overthere staring at you " I rest my case.
On another subject I am not looking foward to xmas as I lost a dear friend to Cancer in Sept and my partner died in October ,we used to always spend xmas together no matter where we were in the world at the time, Now its just me and hard to come to terms with it all. The only way I can cope alone is not to think so I dont get paniced as this makes things worse for me.

well Happy Holidays to you all and Merry xmas to the rest he he Paul

Paul you sound really down. I have been through a pretty bad loss of self-esteem since my vocal cords were removced last year. I speak like a Dalek with a Scottish accent with my Servox. My voice used to be my best asset. I'm not being immodest, but it opened doors fr me eerywhere I went.
Suddenly I was voiceless.I went through a terrible time in summer of being mocked by ghastly teenage girls in the park when I was walking my dog. They would do anything to try to make me talk so that they could laugh at my voice.
I was starting to change my route for the dog and then I pulled myself together. Why should the little darlings get me down./ So I went up to them and said if they insisted on trying to intimidate me I would go to see their parents.
Not very origihnal. BNit it worked. And now they say hello and I give them a big smile. I am sorry about your friend dying. And having lost your partner is just awful. I lost mine four years ago before this hell returned, and still feel him very strongly with me, buoying me up.
Regards Ishbel Colchester

Hi everyone, yes I know what Paul is referring to, I was treated like an imbecile by a not too bright stall holder on the north end road market; as my mouth was all sidways and I slurred; carn't you talk proper !
Well now I can, that is until my mouth shuts by itself often I have the inside of my cheek like raw meat.
As I have a blind son with multiple handicaps, I have become quite hardened to the horrible world we live in where only the perfect live !

Hi Paul

This is Kelley, I haven't been on here since 2004 but glad to say that I'm still alive...and back Reading your posting today just made me cry as I have recently just quit my jobs & have had a really rough time with depression & not wanting to go out in public or socialise. I have tried so hard to stay positive & happy for my life but I just got to a point where I feel absolutely worn down. I have the scars on my chin & neck that I know so many of us survivors on here have and sometimes I just want to scream at people 'STOP STARING AT MY MOUTH'. They do not realise what it takes just to get up each day & face the world trapped inside this prison we have been sentenced to with a smile & pretend that everything is fine. I was only 27 when I was first diagnosed with tongue cancer & then nearly 29 the second time. Apart from teh scars the radiation has had a really damaging effect on my skins elasticity & as with you there is not a day where i go out and am not faced with somebody staring...it is so difficult to talk with people when the whole conversation they just stare at my mouth. I am already so self concious and with a person staring at my mouth it is close to impossible to even concentrate on what I am talking about to them. I understand that people are generally not malicious and are just curious but for that small moment in their day where they are just satisfying their curiosity I then am affected for the rest of my day feeling horrible about myself...even though I may have spent time dressing nice, putting make-up on, blow drying my hair...only to be made to feel like I am different, like I am unattractive & a freak. If they only knew.

If they only knew of the months of pain from surgery, from radiation, from sadness of a broken heart. I have spent thousands of dollars on trying to improve the appearance of my mouth, unfortunately in my first operation my surgeon severed a nerve so the left side of my mouth doesn't move for which I have botox injections into the right side to even it out. This was a pain at first as I had to get use to my lip being in the way, I also have had many laser treatments & painful injections of a cosmetic filler to improve the area...& still they stare. You know I always say that I accept people having a look once but then afford me my dignity & continue the converstaion with eye contact. I cannot imagine staring at a persons big nose, big ears or some other obvious facial feature througout a conversation so it always shocks me as to why some people think it is ok to stare at others that may obviously have challenges. I cannot even begin to imagine what people in wheelchairs or who are severely physically hanicapped must go though their whole lives.

Is the emotional & physical ordeal that many of us have been through or are going through not bad enough that salt has to be rubbed into the already fragile wounds? It is easy to say stuff them I don't care I'm strong enough, I have been through alot worse etc, etc..but the truth is that we all have feelings & nobody likes to be discriminated against for any reason. Our scars should be a celebration of what we have conquered & survived, not something to be ashamed of & encourage us to hide from the world... because then the cancer does win after all.

A final thought my friends.....

"BE KIND, FOR EVERYONE YOU MEET IS FIGHTING A HARD BATTLE"

Love Kelley xo

Hi Kelly.....we first exchanged views back in 2004 I think. Hadn't you just broken up with your boyfriend then?
I'm sorry to hear that things have been difficult and you know from your experience that it can be pretty lonely out there. It was three years before I could effectively face the world again and started back at work (different career) in Jan 2006. I'm doing OK now though I still have issues with side effects and don't have the confidence I used to.
It's nice to know that you are being positive however and that your ordeal hasn't beaten you. We all simply have to do the best we can....or give up.
Although I lost a chunk of myself through Cancer, I am a more compassionate person than before with a better understanding toward any kind of suffering that I see and will do more for those less fortunate than I would ever consider before. I used to drive long distance in 40ft trucks and had that typical brashness that truckers have. Now I drive disabled accessible minibuses for local community groups for far less money and am Chairman of my regional Community Cancer Centre.
In many ways my life is now more fulfilling than it was for many years. My job of course, is also more rewarding. None of this would have come about had I not fallen ill with Cancer.
Some positives form it all maybe......

Hi Steve!!!

Of course I remember you, I'm so glad that you are still posting on this site. Your quite the accomplished artist right?! How is it all coming along?. I am so happy to hear how well you are doing & the positive impact you are obviously having on others lives, it is truly wonderful. Wow a tough truckie now opening his heart to his community and Chairman of your regional Cancer Centre... I'm really proud of you for picking yourself up & rising above it. You are an inspiration to all of us!

For me its kind of been a roller coaster, at times I do really well & get on with the show then I'll have a down period before getting back up again....but this time is different & I've actually scared myself with where my thoughts take me. Living alone for so long has probably not been the ideal situation as now I prefer not to be around people unless I have to. I've gone from working 2 jobs for two years to hardly leaving my home for the past few months. It does make me angry though because I have always been a fighter & refused to give in to this monster but now I find myself walking a fine line. I know that it is time to look outside of myself & give the way you have but I just have to find the path that is right for me. I just hope that I can stop wasting my life & be the person I truly am in 2007.

Really great to hear from you
Kelley

Hi Kelley

I've just read your 2 latest posts and it really does sound as if you have had a tough time of it and I'm sorry to hear that.

It does seem that you have identified you own problem of not preferring to be around people and then when you eventually are, you feel that people are staring? Are you relly sure they are staring for the reason that you feel - your picture shows a very attractive lady!

I'm sure you're still a fighter to have got through this far and I'm sure that you, too, have had your ups and downs. Maybe this is just a "down" time you're going through? Have you mentioned any of this to your local doctor(s) - I'm sure that they haven't forgotten you after all that you've been through and will be there to support if necessary.

In the meantime, I wish you all the best in 2007.

Remember the song "Things can only get better"

Happy New Year

Pete

Hi again Kelley.
Yes...I am a recording artist.....or was, and I wrote three books too. That's all behind me now as I pursue other interests. One of the things that kept me going when recovering from Cancer was a passion I developed for classic cars and I set about rebuilding an MGB GT. (I once trained as a body fitter) After that I did a Camper Van Conversion and more recently have rebuilt and restored a 1963 Morris Minor which was a show car at six events in 2006.

Even though, like yourself, I've suffered terrible highs and lows and gone through periods of complete and utter depression, I have always managed to overcome it by immersing myself completely in some project which would keep me fully occupied and challenge my skills.

I used to have a small wooden plaque hanging in my lounge which read:
"Happiness is the art of being too busy to be miserable"

I think that still rings true today.

Keep in touch with the forum Kelley and I hope 2007 will be a productive year for you.

Steve.

Hi Pete

Thanks for your thoughtful reply. Yes I am definately going through a 'down' phase & looking to seek the appropriate help to deal with this, as this is the worst I have been & I thought time was meant to heal? Maybe its because I should have had some type of counselling in the thick of it or at least soon after. I just always think that I can handle everything on my own, or maybe because of some unfortunate circumstances after my first cancer diagnosis I learnt that the only person I could truly rely on was me... but I haven't turned out to be so supportive after all!

As far as do people really stare or am I just imagining it is a comment that a few people have said to me & I have to tell you its starting to get to me. Please do not be offended by this as I mean you no dis-respect at all as I know that as a fellow survivor you are only trying to help me The truth is that 'YES' people really do stare as silly as that may seem to you or I. Another MCF member Yvonne mentioned in one of her posts how an old friend actually commented on how well she looked as he was a little worried as he didn't know what to expect. She thought this a strange comment to come from the lips of a friend, I have to agree with her. It's funny as I suppose that I can say that the people who know what happened to me do not stare so much & have also said 'You look really good for what you have been through as I didn't know what to expect'(their intentions are well meant). Then there is the x-boyfriend who I dated in my early 20's who sat with me while we had coffee & said 'You were so beautiful when I first met you'... & he is also one of the few inner circle who stared at my mouth constantly, even after I flat out told him that it made me feel very self-concious & could he possibly refrain from doing it. What an idiot, who's not beautiful at 20? Youth is a glorious thing... so I told him that 10yrs on & after all the challenges I have overcome I'm doing just fine. (On the inside I was bawling my eyes out & am still haunted by his comment). The ironic thing is this comment came from the lips of a 37yr old who had gained 11kg's & gone bald!! Go figure hey.

With both my jobs, clients & contacts that I had not met before & did not know about my history certainly did stare. I would be talking to them & the whole conversation they would stare at my mouth, very off-putting to say the least. The anticipation of knowing this was a daily experience it certainly contributed to my down phase & eventual resignation from my jobs. I definately am not a person full of self pity or who wants to wallow in the negative without enjoying what I do have. For me it is just a matter of figuring out my place in the world, surrounding myself with people who care about me & not about what I look like. I am very hard on myself & always have been but then who doesn't want to be the very best they can be! I admit that this experience has finally caught up with me & I am a little angry but hopefully I can sort it all out in 2007 & really learn not to worry about what other people think. I do understand that it is up to me to sort out my head & not let other peoples behaviour dictate mine. Also sadly I seem to have lost my faith so I also hope to re-connect with God sooner rather than later.

I would love to get involved with a program or charity that gives something back & maybe help to make anothers ride a little less bumpy. So here's to all good things for all of us & making the most of today for it is very true that yesterday is gone & tomorrow is not here yet so all we really have is right now.

Take care & thanks again Pete for your reply
Kelley

Hi Steve

Thanks for your reply Wow you really have such a great attitude & have come so far. I do know that it is very true that keeping busy is key to enjoying life & I ABSOLUTELY 100% have far too much time on my hands at the moment to drown in my confused state of mind. I certainly need to get back to work & also get involved in something that really interests me just like you have done with your car restorations. You seem like a jack of all trades & very talented indeed!!

I have two sayings that I have put on the inside of my front door;

'OUR LIFE IS A CREATION OF OUR MIND'
-Buddha

'FOR A LONG TIME IT SEEMED TO ME THAT LIFE WAS ABOUT TO BEGIN-REAL LIFE, BUT THERE WAS ALWAYS SOME OBSTACLE IN THE WAY, SOMETHING TO BE GOTTEN THROUGH FIRST, SOME UNFINISHED BUSINESS, TIME STILL TO BE SERVED, A DEBT TO BE PAID. AT LAST IT DAWNED ON ME THAT THESE OBSTACLES WERE MY LIFE. THIS PERSPECTIVE HAS HELPED ME TO SEE THERE IS NO WAY TO HAPPINESS. HAPPINESS IS THE WAY. SO TREASURE EVERY MOMENT YOU HAVE AND REMEMBER THAT TIME WAITS FOR NO ONE'
-Souza

I think I need to read this a little more often as after writing it down here my problems seem so silly & such a waste of the good stuff.

Till next time
Kelley (: