Hi All

Glad to hear that everyone is still doing well, sorry if I haven't replied to you all but I don't log on very often these days.

Hope you all continue to keep well and "see" you in a couple of weeks - I'm off to Zante!

Andy - we'll meet up when I get back.

Love Marion x

Hi Marion

Hope you have a great holiday and for your continued good wishes

Luckyus

Hi Topstriker,

Sorry to hear you are struggling with your voice but remember this is only the beginning of a long path to recovery following treatment and you are still at the very ' early days ' stage. I finished my treatment jan 4th this year and my voice went completely from about early dec to early feb so it was at least a month after treatment  ended until I could speak and then it was still very hoarse for a good couple of months after that.

Since then I have had good weeks and bad weeks when I feel like i'm getting my old voice back and feel over the moon only to find the following week its back to sounded hoarse and scratchy which has been very frustrating but people do tell me my voice is getting stronger, so I think i am making progress.

I talk alot in my job as im a personal ttrainer so perhaps im putting more than normal strain on my voice than I should. I find that my voice has now gone deeper and don't have much higher range but my consultant tells me it will improve over time but this could take a year to 18 months.

When you have RT it makes everything swell inside as its effectively been burnt by the radiation so it means that the vocal folds are swollen and you will have edema ( water retension) in the neck and the flesh around the larynx, this will aafect your speech and its this that takes a long time to settle.

Sorry this all sounds a bit gloomy but I will be honest i've had a tough time since treatment ended as I thought my voice would come straight back as it has for some people which with me hasn't been the case. This could be because I had several biopsys done by laser which may have damaged it but my consultant says this is normal and assures me it will improve so guess I have to be patient.

its been  a real up and down journey but hopefully you will be luckier than me and find that you get your old voice back fairly quickly, the treatment affects everyone differently. Remember you are only just out of treatment so don't expect miricles straight away, try an rest it as much as possible at the moment and get lots of rest and try not to worry. As marion mentioned, take up any concerns you have with your consultant, I find making a list of questions helps.

Hope you feel better soon and don't worry your voice will return in its own time, if you have any other questions just ask.

Take Care

Andy

Well done on the marathon!!

Hi Marion and Zarker, thanks for getting back to me!

I think it has worried me so much as i coped so well during treatment so losing my voice after was a realdowner, and as you both probably know it is so frustrating! I find myself avoiding things as i know i will want to talk and you feel such a fool when its barely audible.

They gave me an app with my consultant for 6 weeks after treatment, which is on the 30th August, they also said the will /should be able to look and see if the treatment has worked? Is it that simple? they just put the camera down and see if the tumour has gone? did you know that soon as well? I am a bit reluctant to expect to be told as i do seem to get different stories from different nurses etc? I am not due to see anyone until then.

I am a postman so i do a pretty physical job, im not sure when i will be able to go back to work either, some days i feel fine, others i do feel tired, how long was it before youy went back Zarker?  And i  also  need to be able to speak to people!

I also keep having to kind off try and clear my throat  all the time, is that a common problem?

Have a great trip Marion i went there many years ago! very hot!

I know what you mean about avoiding social situations, I went through all that. I found it was better when I was with close friends who knew the problem and didn't always open the conversation with 'whats wrong with your voice?' You might find that telling people you have a problem with your voice will help you feel less self conscious and able to relax more as being tense is not good for the voice.

I had a check up 6 weeks after treatment and they put the camera down and said there and then that it had worked, I think they can tell just by looking at it weather it looks normal or not. however I also had a CT scan just after which actually properly confirmed it so that really helped put my mind at rest. They usually do what they call a base line scan which they will keep for future reference and can be compared to future scans to make sure nothing has changed. Fortuantely all the check ups i've had since have been clear and on my last one they didn'rt want to see me for 3 months which seems encouraging.

I went back to work too soon as I work for my self so no sick pay so I was working 2 weeks before I finished my treatment, and litrarally just whispering, however about a week after I finished the treatment I started to feel  really crap and just couldn't stop coughing so I stopped working for about another 10 days then I went back and have been working ever since. I probably wouldn't have gone back so soon if i didn't have to but strangely I  think going back helped me get better sooner as I got sick of moaping around at home!

I did and still do get tired but luckily I live near where I work and my hours are flexible so I can come home in the afternoon and sleep for a few hours before going back to work in the eve.

The main problem I had with the treatment was a masssive build up of mucus which caused constant coughing and throat clearing, I used to wake up at night coughing all the time , it drove me mad! Its a lot better now but yes I still feel like I need to clear my throat. Try not to unless you really need to as its not good for your voice. Really hope things improve for you soon, just give it time and you will feel better. Feel free to join our group as you can see we have all been huge support to each other as I don't think people really understand how we feel unless they have been affected by it.

Take Care

Andy

Hi there,

Regarding insurance I just got a basic cover and didn't mention the cancer, I think travel insurance only really covers you for things that happen to you while your there eg, accidents, lost luggage, flight cancellations etc, these things are much more of a risk  and to be honest its unlikely now that your husband is going to become ill as a result of the cancer while he's away especially as he is having clear scans.

I'm probably sounding a bit lapse but from what I have heard from people who do declare past illness's the insurance companies always find a way of not paying out and will charge you a fortune for cover, I got quotes of up to £300 for 1 week!!

Don't let what I have said sway you though, you must do what you think is right for you, its just my opinion.

Glad to hear your husband is doing so well and have a great holiday

take Care

Andy

Hi Zarker, Thanks again for your response, it has put my mind at rest knowing that tne voice issue is par for the course! I often feel like i have mucus at the bottom of my throat and try to clear it but nothing happens, like you say it is probably some swelling that feels alien and makes me feel i want to try and clear it. I do a lot of running, i actually ran my way through treatment! but i have been suffering with asthma, i have got a little tight chested in the past but nothing on this scale, if i forget my pump before i run its a nightmare! my gp thinks its probably due to swelling and irritation of the airways and should settle down again? When i had my CT scan after being diagnosed they said my tumour didnt even show on the scan! it was originally to check elsewhere in my body, so my question was if it is not showing where you know i have it, how can you be so sure in other parts of my body! But apparntly my tumour is flat, not a lump, it spread along the surface area, and therefore less likely to show up.

I still run most days, sometimes i feel really good and other days i struggle, i think it really helps me mentally and physically, i swear it helped me cope with the treatment, and saw a piece on the news last week about how they are recommending excersice for cancer patients these days! As you probably know i was diagnosed 3 days before this years London Marathon, and as a twist of fate i was running for Macmillan! I still ran my best time, 2.46.23 and came 340th!

Thanks again for putting my mind at rest and it also helps to know that it is quite straightforward when i go back on the 30th for my results, fingers crossed!

All the best, Steve.

hi

can anybody help me out there please as ive explained in my previous posts my husband has had t1 laryngeal cancer and had laser treatment went back 2 weeks ago for a check up and he is now going back in for more laser on the 22 aug and also biopsies to see if the cancer has returned, but the las couple of days he has being having a pain in his right ear has anyone out there experienced anything similar.

thanks again for reading xx

Hi Lornawales.

I had the same as your husband, I had radio for my cancer after 2 biopsys , I had lazer on one side of my larynx and after a couple of months it had moved to the other side, the soreness could be because of the lazer it might have made it swell a bit, there is a lot of nerves around the larynx.

Whebn he goes to the hospital ask the doctors about it .

I live in north wales.

joe ninty