Hi
I just wanted to find out how anyone has tackled social life after head and neck cancer
meeting new people relating to them giving explanations as to differences in speech facial expressions etc and the notion of going out for a meal well its a big no no for me....
Yesterday i was asked (where did you have cancer well i thought it was pretty obvious i certainly dont sound "normal" or look like what i did before my 11 hour op but maybe this should be taken as a compliment and maybe i am should stop being so anxious getting some sort of social life back which at the moment is non existent.

Mel x

for my dad getting back into the social scene just wasnt what it used to be. Since he loved going out to eat and having a drink or two. I can suggest getting in a support group to be around others like you. I did suggest that to my dad but he didnt want any part of it. I hope everything works out for you and speech will get better with time as long as you do your exercises.. God Bless

Hi Melanie.

DWR again,

Sorry I did not spot your earlier post the other day.

I admit that I felt awkward at first following my laryngectomy, having a hole in my neck and sounding like a "heavy breather" on the phone, Ha, Ha!

However I had to get back to work or starve, and because I use the PC and my brain rather than my hands rehabilitation for work was not so difficult as I know it can be for some. But my colleagues soon put me at ease, aand I went back to work 3 months after my op though at first resisted the telephone until I got my confidence back communicating face to face. Even today I can't recognise what I am saying on an answering machine but 99% of the folk I speak with on the phone including total strangers seem to pick me up quite well now. I still get the ocassional phone put down by a few ladies who must think I am a perv - not their fault, but I always explain to new folk what the problem is and never to feel awkward asking me to repeat something any number of times till they catch what I am saying.

I suppose because of that I felt more comfortable out in the social scene but still tend to avoid pubs or clubs where the background noise makes conversing impossible, but if I can find a quiet corner of a snug I have no issues. But the cinema, theatre, dancing etc. no problem.

The one thing that still embarrasses me though is when I cough which is frequent and then need to clean the stoma (like wiping my nose used to be) but now when in company I simply turn my head away until I can do the necessary saying "excuse me" as one would for a sneeze. If I am in a restaurant however I will generally leave the table and go the the toilet to clean myself and/or replace my foam covering.

In the early days I would automatically excuse my speech on meeting new people but nowadays I find it unnecessary some people will ask how long I have been "hoarse" or do you have a cold? Kiddies love to ask to see my "hole" when I explain what is wrong with me but I am careful about doing so however but always take the opportunity to tell them never to smoke or they will turn out like me!!!!!

We need not apologise for our condition nor fear ridicule from strangers and my experiene is that apart from the odd new lady on the phone most people do not bat an eyelid and are very understanding about communication.

This is all new for you of course Melanie and although I appreciate eyecandy's advice to her Dad I personally shunned support groups as I regrettably found my local group very negative and consumed with demanding things rather than giving support. That I am sure is the exception rather than the rule but positiveness is a must to rehabilitation so if you have a positive support group certainly use their facilities but do not be afraid to do just what you did before the treatment, you have nothing to be ashamed of nor "catching" so get your life back to as normal as you can reasonably make it as soon as possible and try not to be self conscious of the consequences of the treatment but rather rejoice in survivorship, we have nothing to feel guilty about.

Cheers, DWR

Hello Melanie

Your question has set me thinking that we badly need a psychosocial intervention programme of workshops to effectively meet the magnitude of needs for patients with head and neck cancer.

We need to know about the difficulties experienced by patients with head and neck cancer and how they relate to their quality of life. With this knowledge, we need to ask for an appropriate intervention program to be developed and evaluated.

It is sad that you and other head and neck cancer patients are being left to find your own way back to a normal life.

I will try to find out what is available, where and if suitable for the spectrum of head and neck patients who have different needs and issues determined by age, gender, etc.

I would be grateful to hear if anyone has come across some good programme of support in this area.

Best wishes
Vinod

Hi Eyecandy
Thanks for your reply "others like you" I know you do not mean any harm by your statement but this sort of message could be interpreted in a very negative way. Whilst i appreciate the experience of others in a similar situation is invaluable. Finding normality within theconforms of your life is what is important after a head a neck diagnosis that can produce a vast number of life changing consequences. you want to know that you can live a full life again alongside head and neck cancer I wanted to know how I would do that and how other people do without feeling self conscious to meeting people necessarily be meeting people who are similar to me (how many 23 year olds with head and neck cancer do you know).

Hi DWR

I admire you for going back to work so quickly "not to be self conscious of the consequences of the treatment but rather rejoice in survivorship" well your right and I do live by this rule generally but I am at the stage of still apologising if people do not understand me I am at university now and I always participate in group discussions speak on the phone etc but the meeting friends for dinner lunch in multiple numbers or going for a drink(non alcoholic of course)/ clubbing still has not happened I have managed the theatre some art exhibitions museums but that is mainly for my daughter I have been told to indulge in one personal/social leisure activity at least twice a month but more appropriately once a week to make the circle of my rehabilitation complete.
I have also spoken to more than 70 students about the MCF campaign when I get self conscious or frustrated I think it is that I am mourning the voice I once had or the facial movement I used to have but really I should be living in the present and looking to the future

Thank you
Mel x

Hi Melananie,
I can say i know exactly what you're going through!
I'm also 23 and find it difficult to pull back some kind of normality.
My partner of 6 years has been my rock, but i can see his frustration trying to persuade me to do normal every day things. Having my Groshong and RIG tube killed my body confidence - how could i feel sexy with all these "tentacles"??? He's been so patient, so loving, but how long can a man wait??
I can imagine eating out would be a nightmare! 10 gallons of water and 10minutes per bite *lol*
I can talk myself out of any situation - "oh no, i cant go shopping today, i'm still too tired".
And it's so hard when your friends are still out clubbing. I want to.. butt the nerve damage i suffered from chemo means i'd probably fall over before i'd even had a drink!
This week though i'm trying to stop feeling sorry for myself - i think.
Hey, i've even got dressed every day this week instead of rotting in my p.j's lol*
I WILL GO OUT SATURDAY, AND I WILL NOT CANCEL WITH MY BEST FRIEND AGAIN. - i think.
We'll get there.
I'm, too stubborn to think i might never get normality back. But i think i know in reality it probably wont be quite the same again...
You never know though!
Michelle

It must be very hard for you all being in your prime of life when the world should be your oyster. Well whilst I am a lot older than you brave young things, I have more than once mentioned how kissing is just not the same for ages. But be encouraged it has got 60% better 4+ years on, still not quite as before but it is easier to do than it was after radiotherapy.

Amazing that something so normal should become so complex. Kiss - sip water - kiss - sip water - etc- etc - certainly kills spontaneity. But if others were like me then they also have had a hard time doing what should be natural. No one ever picks up on it because we are supposed to act like it is ok to forfeit one of the great pleasures in life by being alive.
Are we supposed to stop kissing because we are older. So I wonder how you twentysomethinsg are coping with this. This is very personal topic yet it just never gets addressed. I don't think if I were single and younger I would find it easy to cope with this aspect of post treatment. It certainly is easier when you have a husband that understands and goes with the moment or a boyfriend who supports you. But where does someone who is fancy free start to explain the problem and at what stage of new relationship without sounding off putting. Hard for some of you I am sure.

Yes, the whole kissing thing is a bit difficult. And I used to enjoy it so much! Thankfully my boyfriend of 3 years has never complained or even mentioned the difference. And now that I am a few years away from teenagehood, I don't really have to insist on sticking my tongue down his throat :-)

Going out to bars and clubs is also difficult, the smoke gives me a really dry mouth and the crowd noise makes it hard to understand what is being said in a group discussion and also for people to figure out what I am saying. The only advantage is that if I am slurring, like I do when I am tired, I guess the person I am talking to just thinks I have had a few drinks (even though I don't drink anymore). Clubs are not possible for the moment, the bass is too strong for my ears which are a bit sensitive. I keep buying concert tickets and meaning to go and then chickening out on the day as I am afraid that I won't be able to stand for the whole performance or that my ears will start ringing.

I think the noise tolerance will get better over time, though, as I can feel the difference even from last september.

How do you guys manage?

Redser

<<<Thankfully my boyfriend of 3 years has never complained or even mentioned the difference....>

Yes my husband has always said he does not notice any difference, but of course the other person is not the one with the dry mouth problem.

Smoke is horrible wherever it is.

Just wondering if you were told about tinnitus when radiothrapy was suggested. I do know I was never told about tinnitus even though other things like possibly getting an under active thryoid was mentioned. Tinnitus is very annoying when trying to get to sleep.

I think you will find you will be able to go out again. Socialising even with close friends and family does have lots of ifs and buts for about 2 years IMHO.

Hi

I do the everyday stuff i did not get the opportunity to stay within the whrlms of my home for multiple days because of my daughter even though i did look like (sorry in advance) "elephant women" post op for months

I see friends go for lunch ....... not that i eat much but its more one friend at a time. I have not done a group dinner birthday gathering and i have not been out for a drink.. (non alcholic) or been clubbing as i know i would not be understood and i will feel uncomfortable i think i am just not the same as i was and dont think i will get the same enjoyment from those experiences that are relative to people of my age.
"But where does someone who is fancy free start to explain the problem and at what stage of new relationship without sounding off putting. Hard for some of you I am sure".

I split up from my long term partner 5 months before diagnosis. In answer to your question i dont know and i am not particularly willing to find out i know i certainly would not be able to kiss..... but my first hurdle is getting my own adult leisure time social life back it was reccommended that i try once a week even if the first occasion is just the cinema.....

Michelle it is still quite soon after your treatment i would not be so hard on yourself take one day at a time in my experience some people close friends or family sometimes see the traetment as very balck and white once its over you should be fine unfortunately it does not work like that physically or emotionally and i am sure he will wait as long as you need him to recovery is different for everyone and you go at your own pace if you dont your emotionally drain your self trying to conform to what others think is the "normal thing to do before your ready. You will get your social life back it may not be how it was and it may take a little longer than you anticipated but social life might even be better because you are more likely to appreciate that time.

Redser i admire your get up and get out there attitude even though you have had a few waisted concert tickets your climbing the ladder.

Mel x

Hi
I have been fortunate in that my voice has hardly been affected, except for a little slurring when I am tired - then I just go quiet and let others do the talking. I socilaise quite a lot, mostly with friends who didn't know me before my diagnosis. I can't eat out but if friends want to go out for a meal I arrange to meet them in time for the dessert course (I can usually have ice cream at least) or if it is a special celebration I explain to the restraunt that I want to sit with my friends but won't be eating and just have a drink. If there are new people around I tend to just say I've had mouth surgery and am on a special diet - I rarely feel the need to say more. My partner left me 2 yrs after my treatment and I doubt if I'd have the confidence to get involved with someone again.Psychological help is certainly lacking. I try to stay positive but I know this cancer has changed me,and my way of life, so much and in so many ways.