Hi to all,

Diagnosed with base tongue tumor 4th June 04. Excised 21 June 04. Six weeks radiotherapy commenced 11 August 04. It is now 3 months almost to the day since completion of radiotherapy.

Current situation: Tongue healed. Slight swollowing difficulty with solids/semi solids. Taste buds still not wholly returned therefore unable to taste many foods (a great loss). I pray that my taste buds will return.

Regretfully I still suffer from spells of nausea and sweats (upper torso) and dry mouth. [Unusual or not?] Strangely (?), these symtoms almost immediately disappear with the intake of a teaspoonful of Oramorph! This is a mixed blessing as I am fearful of the intake of Oramorph not only because it is an opiate (dependancy), but also because it may mask any condition if my current symptoms are not the after-result of the radiotherapy.

Anyway, on 21st December I see my oncologist on my second 'follow up' check and, with clearance from him, I will depart on holiday to California for two months. I intend taking my Oramorph with me to enable me to stay "fit" during my visit. I don't think I can bring myself to leave it behind! However, I am concerned that I may have problems with US customs if it is noted. Also, overall, I am worried by my use of the opiate anyway. Anyone else had a similar experience with Oramorph?

I know, or think I know, that overall I have been fortunate with my treatment and aftermath but I am still very worried about ME above all else. Yours selfishly, Fridge

Hi Fridge
I read with interest your post, I am awaiting radiotherapy which starts on the 13th January. My mould appointment is next Thursday, which after reading the posts on this forum I am a bit worried about.
Because of my stubborness the radiotherapy was put off untill after Christmas and new year, But what I wasn't prepared for is the way I would be feeling over the weeks leading up to the 13th. (What a great date!!!)
I have gone through so many emotions over the last 4wks that I wish it would just hurry up and start, the unknown is driving me mad

Are the sweats and nausea caused by the radiotherapy? I am curious to the side effects, I want to be as prepared as can be.
I was at the dental hygenist(spelling!) today, just to make sure my mouth is clear before the therapy starts, I have another appointment next week to collect a mouth mouse to use while undergoing radiotherapy. Has anyone used this and does it help?

Well Fridge I hope everything goes well for you on the 21st and you have a great holiday.

Best wishes
Tracey

Hi Tracey,

Thank you for your reply and good wishes for my holiday. My 6 weeks of radiotherapy was generally uneventful. Just some neck soreness in last week when I had both proton and electron bombardment. Not that I noticed any difference during these sessions. It was only during discussions that I learned of additional electron emmisions.

I have learned through this forum that radiotherapy affects persons very differently. I suspect I was one of the luckies! Additionally I have learned, again through this medium, that the lasting effects of the rad treatment also differ between people. After 3 months since completion of my radioation treatment I had hoped I would be back to normal (whatever that is going to be in the future!). However, I think I am doing well in spite of the lingering effects I mentioned and the unsatisfactory method (Oramorph intake) I need to take to overcome them. Incidentally, I dare not think that my sweats are the result of other than the treatment.

I am curious to hear about your 'mouth mouse'. This is the first time I have heard of such. My teeth (full set minus an upper molar each side but with numerous fillings), were unaffected by the radiation.

I beg you to go positively into your radiotherapy remembering that this is the start of your fight back aginst the condition. My best wishes to you for the season and a good successful 2005.

Again, many thanks for your kind wishes for me. Regards, Fridge

Note to Fridge, are you still on the Oromorph? Did you run into America's War on Drugs (just kidding).

Getting off the liquid morphine I took during the last part of my treatments, and for about four weeks thereafter, was one of the hardest things I went through. I'm not a doctor, but think by now you ought to be off the oromorph.

Thanks Fridge
Fingers crossed that I am one of the lucky ones, and don't have any adverse reactions. I am praying that my voice survives because I am a professional singer and will be lost if I can't sing anymore.

I must apologise for my spelling last night I meant to say mouth MOUSSE, which you rub on your gums and around the teeth during treatment, it helps to replace lost minerals from the tooth and help prevent decay it helps if you suffer from a dry mouth (which all of us do)
I will give it a go anyway, I will try anything if its going to help.


Tracey

Hi Ron,

Thanks for the joking 'heads up' on war on drugs. But I understand there to be a seriousness underlying your remark even if not intended by you.

I still take Oramorph but in as small amounts as almost possible (ie half a teaspoon full). But, since this is effectve, clearly Oramorph is affecting my system!

I have sought advice from our medical community - but not US customs, about taking it into the USA and was advised that, having an associated medical proscription form attached to the bottle, may...may, help with entry.

You can see from this that, contrary to your good advice, I am reluctant to leave it behind as I believe that any meaningful enjoyment of my holiday depends on it.

I have been visiting my place in California for the last 12 years since my retirement for varying periods (up to 5 months each visit) as strictly allowed by my 6 month visa requirements.

Even before the ghastly 9/11 tragedy I was always apprehensive when presenting myself before immigration officials. Always in my mind wondering their mood (as they have almost unlimited discretion to refuse entry), this even when always I am squeaky clean concerning procedures etc.

Understandably, after 9/11 I am even more apprehensive. This is not a criticism I assure you, after all, to date I have always gained entry.

Because of my current ailment and associated treatment it is 8 months since my last visit and oh! how I miss the place.

Sorry to have rambled off message. Regards, Fridge

Hello Fridge I once took my daughter through customs (albeit Australia) with a "cart load" of prescription drugs with no problems. I had been advised to obtain a letter from her specialist listing everything she was on and why she needed them. Hope it helps. Have a good holiday. Brenda

Fridge,

Sure wish our customs/immigration people were a little more user friendly. We do make a lot of money on tourism. They need to keep things in perspective.

Speaking of 9/11, there were usually around 50,000 people at the World Trade Center, and our total loss was around 3,000. That means the survival rate of people in the World Trade Center on the morning of September 11 was way higher than the survival rate for any form of mouth cancer at any stage.

I think you should get some kind of GP letter about your Oramorph even if you have to pay for it. It won't be fun after a long flight being questioned if customs take adversly to your having it and you are unlucky enough to be searched. I think I'd be prepared with an official statement that you need it.

I can understand how much you feel it helps you having taken it myself, but I think you have to let the crutch go at some time and now may be that time. I weaned myself off the stuff rapidly once the burns were healed over.

Even so I still have to take doses of prescription quality Solpadol daily and high dose ibuprofen to cope with the shooting electric charge type shoulder pains ( fibrosis / l'hermittes). Even they don't always work and those days are just miserable.

So yes I understand how hard it is to give up what can banish agony.

Whatever - have a great holiday.