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(posted 27 July 2004 01:49 AM
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

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