Hi Anthony.........as I writing this I am drinking a peach smoothie. I find that they don't burn as much as the fruit drinks. I put 2 cups canned peaches, 2 cups 1/2 and 1/2, and 2 cups vinalla ice cream. I tried it with peach ice cream but it was a little too sweet. Three years and 5 months ago I had base of tongue cancer with 56 lymph nodes removed along with a chunk of the tongue, 24 radation treatments only because I was too weak to finish, lost 29 lbs, had the feeding tube for two years and 2 months and after the radation I spent 3 weeks in a rehab center (too weak to be home) had 5 operations and in the hospital 10 times all in 6 months. Sounds like a bummer and I hated the peg but on the upside I'm here, eating pretty good except that I have to be careful not to choke. My saliva is very little and the taste buds come and go. Some days good, some days really lousey. I had a couple of cookies with chocolate and I thought that my tongue was going to fall out it burned so much. So far I've only gained back 5 lbs and I hope to gain another 15 or 20. One think that I've learned is patience and for whatever it's worth there is a light at the end of the tunnel. I never I thought I would be as good as I am but I surprised them all. OH......... my speech is almost back to normal, I used to sound like Donald Duck for a long time. Time to go because I could go on and on. Whenever people ask how I am I say are you sure you want to know, I don't lecture about the smokes but they do get an earful and the funny part is that they come back for more. Anthony try to drink lots of water and if ya want to have another moan you're allowed a 5 minute pity party once a day or save them up and have one big one once a month. Joan P.

Hey Joan you are a star. Thanks. I could not imagine what you have been through - and are still going through. BUt I really appreciate the kind words! 5 muinutes aday sounds good to me!

And the smokes - oh yeah! How can people stand outside the radiotherapy/ chemo unit smoking? It does my head in! Right under a bloody great NO SMOKING sign too! Oh well!

Tony

Hi Tony,
Been ages.. How are you feeling as of now? I hope you are feeling much better then how you sound. One can never discard the benefits of any alternative medication as long as it is not in direct conflict with the traditional alopathic , which we all prefer to use. Here in India - we have a number of such cures for Cancer as each of the religions have their own ideas on what to use for cancer. The Budhists swear by their medication, the Hindus with theirs etc. I for one could not figure out if I should have gone in for the alternate treatment as well as it would not have made any difference in the alopathic medication I went through. Its more a question of belief and if you believe, there is no reason why it should not work.

Joan has given you some great tips. I too used to have the same problem - when I could eat. The one thing that was good and easy on the throat was banana milkshake or any other shake made with a non citrus fruit. It would not just taste good but also one could vary on what kind of vitamins one required at that moment.

Regarding the smokes. I am also guilty of having done the same. I can well understand how mad you get at such things. Well, I learnt the hard way and am paying a heavy price for the same. like you, I too freak out on those who come for treatment and the moment they are done - they rush to light up!! I am really glad to a large extent that I leant the lesson the hard way as if I had not - am sure I would have been in a worse shape then one can imagine.

Looking forward to reading more on your progress.
With warm regards,
Ananth

Hi Tony, I also had radiotherapy to my tongue,mouth and neck. After 3 days my pain kicked in like a candle being put into my mouth. I was told it would be just the last 2 weeks it would hurt....they lie!!!ha ha. I ended up on Fortisip milkshake drinks 5 times a day as I couldn't tolerate anything else.They come in a variety of flavours but I could only drink the coffee mocha flavour which was actually ok warmed up a little. I couldn't and still cannot drink or eat any fruit or fruitdrinks as my mouth still burns (18 months after radiotherapy!) Just thought I'd share this flavour with you and make as Ensure drinks didn't do this flavour when I was drinking them. I got them from my dietician who put them on prescription for me.Hopefully you won't have to resosrt to these ...erm...fabulous(lie!!) ha ha drinks.

Take care for now,Sammy x

Hi gang
Really good to hear from you. Ananth - what you been up to? You lead a complicated life - I can't follow your adventures!

Sammy thanks for the support - I will be looking into these drinks. "Candle in the mouth"- yes I can empathise with that. People keep saying what is it like...best I've come up with is imagine bad toothache, a sore throat and a whole lotta mouth ulcers all at the same time and you're getting close.
Thankfully I can keep smiling and so long as I don't try to talk, eat, drink or swallow, and remember to breathe through my nose it's fine. (Okay I am exaggerating a little!)
I've got another 14 sessions to go so I've not really started to suffer properly yet - D'oh!

The things we go through to try and er...stay alive. Yeah must remember why I am doing this - it isn't a strange sport or a hobby!

I agree with Ananth that belief is such a key to any cure but also that traditional medicine should never be abandoned for alternative cures. Compliment them yes. So Silver Birch teas of various kinds for me - and I do actually think they alleviate the pain - some of the time. But no way would I do without my pain killers all the same!

Very best wishes to everyone.

Tony

Hey Tony hang on in there - the world needs more of your music!

I have just spent an enjoyable few minutes on the website of Seb. T. Burn - love it!!! Will definitely have to go back and share with my other half as I think he will thoroughly enjoy it.

Best
Cathy

Hey CathyS

That's very kind - glad you enjoyed the music. I am still trying to sing but by goodness it is painful now - mainly for other people (Tee Hee)

All the best

Tony

Hi again Tony,

I agree I have lead and still lead a very complicated life. I guess I was born to lead on in such a crazy way. The doctors just cannot seem to make up their minds if I am dying or not and I on my part do not care a hang. I mentioned to Sammy to accept things as they come along and ones lofe will be so much easier and thats exactly what I am doing. I also wanted to talk about the Hyperbaric but forgot to mention it to Sammy - so pemit me to do it from your thread. Hyperbaric is almost what I would term as magical. However, one should not expect miracles to happen after just a couple of sittings. One actually starts getting the feeling of well being as the days go by. As the throat gets pure oxygen - it tends to heal faster and I can vouch for that bit as it honestly helped in my case.
So now Tony, what else have you been upto? I know my posts are not that frequent but will reply to any posts if asked to of if I can be of any help.
do post and let me know how are you and hows the treatment going. I'll give you more news in my next post about the new developments in my crazy life.
lots of love,
Ananth

Hi Ananth and everyone
Well I thought I had something to moan about but today has been hell - the tiredness is really kicking in and my mouth hurts like the proverbial hell. Food tastes like wallpaper paste and goes down like barbed wire coated in acid. I look back with fondness to the days I squirted liquid food up a tube in my nose. My tongue is really painful - which makes all swallowing - even water - painful. The co-codamol and ibroprufen aren't really having much impact. And no hospital till MOnday - D'oh!

Right I feel a bit better now thanks. Nothing like a good moan. I feel sorry for my family because I'm not being very stiff upper lip about it all. My poor kids must be sick to death of moany old dad - and my wife is gritting her teeth and smiling through them!

It's Eurovision song contest tonight - Yippee! Something to really kill he pain - Hah ha! Real suffering awaits as the Euro once more demonstrates how mad Europe really is!

I'd love some of that pure oxygen right now; I am doing my very best to accept what comes along but it's hard to accept that Middlesbrough are going down into the Championship!

All the best to you all

Tony

Hi Tony

Watching the Euros also at the moment.Is it me or are the acts decent quality this year.I particulary like Icelands .Bad news about the Boro.I think their luck is about to run out.

Anyway I know what you are going through with the treatment.I never really took to cocodamol.I found it very difficult to cope with the taste of this.I had radiotherapy and chemo within a very short space of time.They say no gain without pain and I tried to remind myself of this fact every day.In the end I had to take liquid morphine and slow release morphine tablets.The pain gets worse but then it gets better. Keep on trying to drink and eat little bits on a regular basis.I struggled to do this but its good advice.

I am a Rangers fan btw

Hi Tony,

Sorry to hear that you are feeling crap and that the radio maybe temporarily interupting the progress of your musical career. Weekends are always bloody awful. Hang on in there - its going to be tough but you will be back to crooning in no time. Chaz started to Pavarotti imitations only a couple of months post radio therapy.

As for pain killers he got presecribed codeine, tramadol and some oral morphine. Codeine was a bit constipating but I know he found tramadol brilliant at night - it really helped him sleep. Small amounts of oramorph also seemed quite effective for numbing pain in the mouth.

I hope you get some good drugs today.

Warm wishes,

Cath

Thanks Cath
They didn't give me anything today but its my review tomorrow so fingers crossed I'll be given something as the pain is wearing me out. I'm such a wuss but even drinking water is a major pain!
I've got a huge blister on my tongue that makes even breathing painful - what with that and the throat and the - oh well you understand. On top of which I have the headache from hell, can't sleep and can't focus on anything. I'm so glad I can come here and moan and sulk - sorry that others have to read about it but it helps me - so thanks!

I'm half way through now - only ten more visits to go but if its going to get progressively worse I'm starting to panic. I think they'll have to drag me there, kicking and screaming like James Cagney at the end of Angels with dirty faces. (Classic old movie for anyone too young to know what I'm on about!)

When I had the major op 5 years ago it was like BANG and then a slow recovery - but this is like gradual deterioration and I think in many ways that's worse mentally. Or maybe I'm just mental - it has been said! Anyone going on my website would agree I'm sure!

Got to try and pull myself together, pick myself up, dust my self off and "stiff upper lip old boy" type thing. But oromorph sounds great - I remember it well - but it did turn me into a zombie last time (according to my poor long suffering wife.) Not sure how she can tell the difference.

All the best to everyone - and I hope I am having more pain than anyone else. I think I'll make that my sign off

Here's hoping I am in more pain than you are

Tony

So sorry to hear that you are in so much pain. I hope they get your drug regime sorted tomorrow. BTW I just remembered that Chaz started to have real problems drinking water during radio therapy. I did some googling and quite a few patients complain of it being 'too thin' and find milk easier...

You are nearly there Tony, dont give up. In 3 months time you will have almost for
gotten all about it.

Take care and keep moaning.

Cath

Hi Tony.

Oh how I really feel for you at the moment.It sounds like you're having exactly the pain etc I had when I had my radiotherapy.When I look back to mine now I honestly don't know how we carry on but you have to. I remember vividly sitting in a car park outside Burger King at Cheshire oaks near Chester on our way to Clatterbridge where I had mine. I was smelling the gorgeous odour from the Burger place,drinking my Fortisip then all my lips breaking open and dripping blood from my ulcers.I took a very large slug of my oromorph and just said to my mum that was it,I couldn't go on<I would rather die than go through this pain.....It is a very harrowing memory I still have....it still haunts me to today every time I see my son and think what could have been.Now I am so so glad that I had that strength to go on for my son. When the awful treatment finished and I was abbandoned by Clatterbridge,I eventually saw a Macmillan nurse 2 months later,still with ulcers,bleeding all in my mouth,thrush,etc and she immediately put me on Durogesic Transdermal Patches-morphine in a slow release patch on my arm.Within hours I started feeling human again but slept I think for a month solid!ha ha slight exageration there but it was lovely to sleep again. I am now 18 months post radiotherapy and am still on the patches but have now weaned myself off them from 75mcgs to 12mcgs,I'm hoping to be morphine free by the summer.Its taken a long time to come to terms with it all but it is easing at last.Hang in there.I just wish I'd known about this site when I was at my worst.Keep moaning,get it off your chest and we're always here.

Take care, Sammy x

Hi Tony,

Sorry to hear your in such pain at the moment. Keep going you will get through it.

Are you using bicarbonate soda mouth wash?

During my R/T there were a few times when I just could not do it, even got unmasked and left the room. Nurses in the ward gave me some meds to calm me down and I managed to go back for treatment.

Not easy but keep ticking off those sessions one by one.

All the best

Ken