Hi Michael

Thanks for your reply and explaining more about your situation.

According to my consultant there's no need for my anxiety about a total laryngectomy as he feels that I will be OK. It's been nearly 3 years now so I'm getting out of the "danger of reoccurance" zone. I can't get complacent though as I still haven't got to the 5 years "all clear" stage but as the years go by I am starting to get less worried. My consultant put me forward for counselling last year, as in his words "your throat is OK but your head isn't!" I wasn't offended as he knows me so well now and we share banter.

I do know what a stoma is and I see quite a lot of people who have them at the clinic. I'm glad to hear that you are getting on with life as normal as possible and that you are managing to talk with your voice valve.

Take care,

Love Marion x

Hi Marion.

Glad to see you are not as bad as I thought, its great newes to see you are all clear you know how I am if you know what a stoma are. when you have cancer it is hard to talk about it and I found that people seem to shy away from you. I have been to the hospital and spoken to people like me about treatment and the future and it helps,

With this site you can talk to people and exchange messages about your problems,

Well keep well for the future.

Joeninty

Hi Michael

Thanks for your reply. It's great that you are talking to people in a similar situation as it always helps to talk to someone who knows exactly what you are going through.

I'll let you know how I get on with my next appointment on 28 July.

Love Marion x

Hi Marion,

Hope all is well with you and you have had a good summer. Just thought i'd drop you a line to touch base. Had my last check up in aug which revealed that the left side of the vocal chord is still inflamed and slightly swollen and although he examined me via the endoscope he could not see well enough to make a proper judgement as it always makes me choke, sure you know the feeling! Hence he wants to have a closer look at it while i'm out under a general, while he says he doesn't think the cancer has returned he thinks it could be scarring from the lasering or just badly strained from incorrect use of the voice for so long.

The quality of my voice varies from it being slightly hoarse in a quiet room to being almost inaudible in a noisy place or out side as there is no volume in it and i just can't make my self heard when lots of people are talking which is so frustrating as I sure you know. My consultant assures me it will improve but i'm beginning to think that perhaps he is just saying this as its been like this for so long, although it did improve dramatically after the last op in dec 09 but has been steadily deteriorating since Apr. I have a feeling that my vocal chord has been scarred from the lasering and this has done lasting damage as I have read that the voice never recovers if the vocal chord is scarred and there is no cosmetic treatment available to improve it, and if the cancer has returned I will need more lasering which will make the problem worse, so i don't know what to think.

I just wondered if you mind me asking how long was your voice hoarse and did you have any scarring and how long did it take to get back to normal? I know every case is different but I just want to know if there is some light at the end of the tunnel and that its not just a false hope thinking that one day it may return. I miss it so much, and am finding that my confidence is low when i talk to people, especially when I meet people for the first time, and I have been avoiding certain social situations and dread making phone calls, guess this is all familiar territory to you. Sorry this is so long and rambling just having a bad day.

Hope all your check ups are continuing to go well.

Best Wishes

Andy

Hi Zacker.

I have been reading your letter, you seen to be up and down, is the sore throat through the radio, has it inflamed your vocal cords. I had the same things wrong with me my voice never got better, I wont go into what happened after. my voice got weaker after the radio and it is hard not to be able to speak when and how you want to. I hope that you get better my thoughts are with you and all the people that have the same complaint, als I hope Marion is feeling better.

Thinking of you both.

Michael.

Hi Andy,

Hope your well.

Just seen your note and thought I would drop you a line to see if your feeling any better.

I know exactly what you are going through and how difficult it can be. I used to wake up in the night dreaming about it and hoping every day that I would wake up and my voice would be great. I used to skip meetings at work and all but stopped using the phone when it was at its worst. I will be honest Andy that I actually ended up on anti depressants because of it and got signed off work and this did help. I am not for one minute advising this as every person is different but it really cleared my mind and has helped me since and through my Radiotherapy.

On the issue of the scarring I would leave those thoughts for a while as if you have any swelling it can cause a change in your voice depending on where on the vocal cord it is. I was taking to a neighbours friend a couple of weeks ago and he had twelve papillomas lasered of his vocal cords and he sounds great so I would not worry yourself until you are clear of the dysplasia once and for all. When you get to this point, which you will one day, then you can see where you stand with your voice. There are things that can be done for scarring including speech therapy and things will be being developed so don't despair. I know how hard it is and we have all had bad days when you cannot see anything positive, But always remeber that it will at some point be good and you will not be stuck with this for ever. Also remember that this has been picked up very early and even if severe dysplasia it can still regress (and some doctors don't even class it as cancer and only in situ) and if it does get worse you will put through the RT and it will almost certainly clear it up.

As I said I hope you are feeling a bit better and if you want to drop me a line you can email me as you have my email address.

Take Care Mate,

Chris

Hi Chris

How are you? I don't know if you've emailed me but my computer is so slow that I don't even bother to go on it anymore!

How did the radiotherapy go and have you got your voice back?

You will see that I've just replied to Andy and I seem to have gone down the same road as you.

I'm just about to start acupuncture to see if it helps with my dry mouth so I'll let you know how it goes. It will be great if it helps. I'm sure you will be going through all the horrible side effects that come with RT. Things will improve over time though.

Please let me know how it all went. I'll even sit at my computer for an hour waiting for it to load if you'd prefer to email me

Take care,

Love Marion x

Hi Marion,

Hope your well.

I did send you an email but don't sit there for an hour please I would feel bad!!!!! lol

I am ok after the RT. It is three and a half weeks since it finished today and although still sore inside (this is getting a bit less) everything seems to be heading in right direction.

I had all the side effects you mentioned and I must say it is the worst pain I have ever had. I lost a stone and half during treatment but was forcing as much food (soup) down as I could manage. One thing I seem to have been lucky with is my saliva. I am dry in my throat but ok in my mouth. It appears that they have given me the RT from both sides and not face on and so missed my main glands. This does cause other problems as it hit my main artery so puts me at a higher risk of a stroke in the future. I guess I need to be healthy and hope it does not happen

My voice has improved over last week or so. It improved during my treatment a little then all but went after I had finished. I was panicking but it has improved. I just don't want to count my chickens yet as it will still be swollen and I have had false signs before so just taking every good day as a bonus and will see where I am after 3 months.

It is funny that during the recovery that it all seems to get better over a period of time but the pain and quality of voice alters daily. I have been told the recovery can take up to 6 months so just letting everything settle down and will have to review where I am then. The main thing at the moment is tiredness. I can be fine and then all of a sudden it feels like I have not been to bed for a week. i went for a walk on Sunday and bang on 3 o clock (the same as everyday) I was fit for nothing!!!!

I hope your accupuncture works. You will have to keep us posted.

Take Care

Chris xx

Hi Marion,

Thanks so much for your reply and your kind words of reassurance it really helped cheer me up, also had a very nice positive reply from chris too so feeling much better. My voice at the moment is pretty consistently hoarse and has not got worse or better, my speech is very gravelly and deep and when I speak in a public place people tend to look round as i'm sure I sound weird, or perhaps i'm imagining this,( as friends tell me) as I have become very aware of how I sound. Like you I dread going out to noisy places as my voice goes completely and I have to explain why I sound so bad, its easier when you have a few friends round for dinner who know your problem and you don't feel self conscious, so have been doing a lot of that. Cinema and theatre are good too for voice economy! I know what you mean about the phone, after a day at work training clients my voice is in bits and the last thing I want to do is talk to friends on the phone, its too exhausting so I use msn or chat on facebook so its only my fingers that get tired.

I'm due for my mico endoscopy soon but have not had a date yet and couldn't get through to the right person at the hospital so have written to my consultant to find out when the date will be, have also had another CT scan. Its encouraging to hear that your voice is back to normal and the person that chris knows also has his voice back, as i'm sure you know how it feels at its worse, you feel like your old voice has gone for ever and that you will never again be able to have a normal conversation with anyone without straining.

Just wondering if you have changed many habits ( if you have any!) since or while you recovered, eg diet , alcohol, etc. I have always enjoyed a drink and i'm sure I have and probably still drink too much although I have cut down since all this. I'm finding at weekends I'm ( I don't drink during the week) drinking to try and relax which I know is not good as alcohol is bad for the voice. I drink either wine or beer as I know sprits are bad and obviously don't smoke. just wondered what your take is on this, as my consultant told me I would be better off giving up completely which I would find very difficult. Sorry this is all long and rambling but its so good to talk to people like your self and chris, who understand because as you say people just don't relaise how tough it is and how isolated one can feel struggling with this on your own. Good luck with the accupnture have heard lots of good things about that. let me know how you get on.

Keep in touch and take care

Andy x

P.S when we are all better we should all perhaps meet in person for a meal or something