In May 2002 I was diagnosed with cancer of both the Tongue and Tonsil and underwent surgery which involved, Tracheotomy, neck dissection, mandibularotomy tumour resection and radial forearm reconstruction and post radiotherapy.(God don't that sound scarry?) However, 9 Months after the radiotherphy was completed I was again told that the cancer had come back on my tongue (bearing in mind they had taken 45% of my original tongue away) and that I would require another operation (almost identical to the one I have first time) to remove the tumour, this time obtaining the tissue for my flap from my stomach? However before this operation I was told to undergo 6 weeks on chemotherapy which I completed at the end of September 2003. I then went into hospital for the operation in October 2003. It's now been just over 7 months since coming home from hospital and aside from the obvious feelings I go through and with the difficulty in eating/speaking and swallowing I'm still trying to be optimistic.

My problem is that despite seeing my surgeon together with my radiologist every 4 weeks who assure me things are progressing fine, I'm not confident that they are. I continue to take several pain killers a day in order to hold back on the pain I'm getting from the other side of my face/neck/ear and am often woken during the night with this discomfort. I have reported this pain and the fact that it seems to be worsening to my surgeon and his team but have only been given steroid injections into my neck to help relieve the pain (I'm not even sure that this works?) I have had another MRI scan and they say all is clear. What I can't understand where the pain is comeing from and why it continues to worsen if there is nothing there. Not to sound like I'm craving attention, another problem I have is a cloudy head or fuzziness at the back and around the top of my head. This is not painful but in itself is a worry.

Please let me add I trust my surgeon 100% and believe the man and his team have saved my life more than once. I'm just a little nervous that although his intentions are good they don't seem to show the concerns I'm feeling.

One other thing is that whilst I accept I'm lucky to be alive and that having cancer once and being able to survive is lucky having it twice is almost a miracle. I need to no my long term prognosis. They say I'm not to worry and let's take each day as it comes, but try taking that thought to bed each day, I'm now back at work and although I work from a desk get tired and wonder if I should be enjoying my life because the chances are, """there's not much time left so enjoy while you can""" or stay at work and keep my head down and stuck into it?

Sorry to be a pain, but it would be nice if someone could just answer truthfully so that I can plan ahead. Off to take some more Pain Killers.

Thanks for your time

Tony

Tony, after reading the terrible time you have had and pain you have been through it makes me ashamed of the way I fell. You have been through hell pal and no one can give you advice on whether to work or not. The only advice I think anyone can give is do whatever makes you happy, be that enjoying you work or your retirement. You know there is more to live than money and thats from a man who was earning over �1,000 a week now living on state benifits.
My best wishes are with you
Cheers Maurice

I'm not sure if I'm really answering you here Tony. But just want to say welcome dear friend who has suffered so much already. You have already been through what many of us dread. Should you sail round the world - who knows. If that is what you want to do, do it. If you had not become ill would you have done it is the question to ask.

Maurice and Tony the problem of fear and bewilderment and disbelief never really goes away does it, because there are no guarantees with any aspect of this treatment.

We must give those trying to help us a chance and live in hope that we will be the statistic that pulls through time and again.

I think we all feel this lack of confidence, this niggling doubt at every twitch of a muscle in the face or strange feeling we get. The difficluty of accepting reassurances from medical staff as they make their copious notes! You may think when your read my posts that I am confident, but I'm not. Inside I feel fear and wonder """how long do I have """ just like you both do.

BUT I did take on board some very good advice the day I was diagnosed. I was led to a side room where the nurse practitioner kindly chatted to me whilst I wept as the words carcinoma sunk in.

I said to her """well I've had a good life and done all the things I've ever wanted to.""" She snapped back isntantly, but in a kindly way """Now don't talk like that and don't think like that, it won't do any good.""" She told me how she would put her life in the consultant's hands anytime. """He is the best,""" she said and I thought so are you for talking to me this way. She was telling me not to give up but to give every treatment a chance.

The second person that had a major effect on my outlook was a particular radiotherapist. Maurice I think this is what you are going through now. I was few days into rads treatment and I kept thinking is it all worth it, what if it doesn't work, will it work, will I ever taste again, will this radiotherapy just kill me, finish me off. I told the radiotherapist this that I doubted it might work and she looked very shocked and simply said """I would not do this job if I did not think it worked.""" She was so confident that it worked for most that I began to believe I could get some extra mileage and a few more sunrises too.

She too made me realise that what will be will be and in the meantime we try our best to live to take another chance and we really do need to believe any treatment we have will work. I think that belief has a positive effect on your body. Your body knows when your brain is won over too, or your brain is lost to doubt and so is your body.

I don't expect I have answered your question Tony, but I think I can help with the fuzzy heads. This sounds just like blood pressure problems to me. I have taken blood pressure tablets for some years. I recall those woolly fuzzy heads especially on the top of the head as if the skull is pressing your brain in. Perhaps getting a BP check is required your BP may be up with the stress you are having from fretting so much. I forgot to take my BP pills on Saturday and had fuzzy head Sunday.

I wish you luck Tony and hope those pain killers work. Have you found the pain is worse when it is damp weather and better when the weather is dry?

Good to see you are online Maurice.

Hi Tony
You said:

quote:

the pain I'm getting from the other side of my face/neck/ear and am often woken during the night with this discomfort.

In my experience, I have found many instances of this type of pain to be a muscle pain related to clenching activity (bruxism) at night. Please try the The Relaxation - Autosuggestion Method before sleep. Also, if you are giving your jaw muscles 'overtime work' through keeping your teeth together in the day, leaning on your jaw (whilst sitting or sleeping), chewing gum, biting your fingernails, etc - STOP these activities.

Let me know if this helps. I may be mistaken and you might have no teeth at all .

Best wishes
Vinod

This message has been edited. Last edited by: Dr Vinod K Joshi,

Hello Tony, I can add nothing to the great letters of Pauline and Maurice, and of course Dr. Joshi, apart from saying that I think you are a VERY brave man to be back at work after all you have been through, and are still going through.
Only you know which makes you easier with yourself. The fact that you can knuckle down and work to a routine is really great. And you're not daft enough I'm sure to do it if it exhausted you.
Whenh I had finished my radiotherapy I went away on a camping holiday with my family. It is what we always did and I wanted to show that I was getting back to normal.
I must have been mad. I took the next day's train back from Suffolk to my own bed and nice neighbours and left them to it!
All the very best Ishbel

Thank you all so much for your kind words, it's a truly wonderful feeling knowing that there are people out there who have been through, or going through the heartache that I sometimes feel. I do try to stay positive and my wife keeps me strong but I guess (as my wife say's) 'this is normal'.

The pain I refer to does not unfortunately occur only during the night, in fact on the way into the office today, I've needed to take more pain killers. The pain comes and goes during the day but I guess when my body is at it's most relaxed (when I'm sleeping) it can sometimes feel worse?

In your experience do consultants offer a clouded
prognosis of your condition because they truly don't no, or do they keep information back because of the impact it could have on a patient? I guess I'm saying after having 2 major operations and about 75% of my original tongue removed plus other boby parts, 'are the chances of the cancer coming back greater than that of someone who lets say """having only experienced the operation once""" (and I know once is enough)'.

Maurice, you are so right in what you say about money, but I guess it's not just about money. I sometimes feel that people around me (not those that are close) refer to me as someone who 'had' cancer and therefore should maybe now consider returning back to the working sector where possible and """Get Over It""". My employers have been wonderful, but again while I was at home after having the last round of chemo followed by the operation, I kept getting the impression that I should now consider coming back to work as """we do need you""". Hense why I'm now here.

Pauline T, again thanks for your advise and honest views. Sometimes I think I'm asking people for answers that there yet, I guess it's like betting on a horse race, you know someone will win/lose but until they all run you have no idea who.

Talking about being back at work, I'd better get some work done. Thank you all from the bottom of my heart for your time and kind words.

Tonyx

Hello Tony, What can I say that has not already been said�� I certainly don�t think the Consultants hold anything back (Not in my case anyway). At the time of my diagnosis, I asked the Consultant � How long do I have? His reply: �We will be having a conversation in five years time�. I then asked � What after that? His reply: �Who knows, I (Meaning him) may die of a heart attack.� For me personally, I have to believe this. I don�t think I will �Kick the bucket� because of cancer.

That�s not to say the fear factor is not there.
In one way Tony, you should take it as a compliment, some people around you refer to you as having �had� cancer. I could think of nothing worse � for me anyway, the thought of people saying �Poor Rosemary, she had cancer you know�, referring to me as an invalid. Having said that, my experience with cancer has been nowhere as ferocious, nor do I have the pain you have to endure.

You must do what you want to do Tony, you have not survived just to please other people. You and your wife�s happiness is paramount now after all the trauma both of you have been through, that�s all that should matter.

Take care
Rosemary

Welcome Tony, what a story you have and to be back at work,WOW, you are truly a very very strong person. I am amazed by this. I also have a pain in the neck area esp. by my right ear. My doc told me that it was from the mouth being strechted open for so long during the surgery. As for how long do you have to live?? How long do any of us really have? With or without a disease. No one can honestly answer that question. Tho I wish that they could for us. I think it would calm some of the fear that we all have. It is like we are living with a time bomb waiting to be lit. You stay strong, and keep us posted on how you are..Always Vicki Lynn.

Vicky, you are an amazing person, your story had truly touched me in so many ways. You seemed to have spent the last 15 years on such a giant rollercoster.

You are correct in what you say regarding 'when will our time come' I guess in some ways if it is the cancer that kills me then I do have some kind on head start on most and therefore want to plan ahead so that I can get the most out of the time I have left (it may sound gready but why should I not take advantage of my situation).

I will continue to admirer you and your family and take hope also. Good luck with your future.

Tony

Hi Tony I admire your strength.
I had&mouth 7 neck op in Nov 2201 followed by radiation in Jan 03.
I thought I was well enough to go back to work but it was a complete failure mainly because I was tired all time time and my speech is affected and people now saw me in a different light :banghead: !
I now do a Voluntary job for a Charity near home 2 morning and it is on the agreement I come and go as I need.
It gets me out ouf the house a reason to get ready and I do see differnnet people.
The one thing I miss like I saw in Maurices reply is the lack of income that is hard.
But hey all I can do is take today as it is and do what I can
If I see tomorrow thats cool another day to live as full as possilbe.
I have just got over another Biopsy scare and my god that taked the stuffing out of you even if you have had then before you think this time I am not going to be that lucky.
I wish you all the best in your desion but go for it Tony .


Regaurds

Paul