Well the day is near for the start of the treatment, now saturday 31st October. I'm so glad it has been brought forward as my lymph node is throbbing nightly now and I cant sleep well if i lay on it, I take tyronol nightly to stop the throbbing, I hope its not an ominous sign, that it is swelling weekly now and is 6cm.

I start on saturday with the making of the Mask, after that I dont know, I think I was told a week later they start the first Chemo in hospital for a week to monitor it, to me its like jumping from a cliff on a bungy and hope some time in a few months time ill be catapulted back up with a srunken lymph node and no signs of the base of the tongue cancer.....so who knows if that will Zonk me out to much, but it is of the utmost Importance I work through this its the key to me staying here and continuing the treatment. to late to go to the UK.

When do you think i will need to start eating liquid food or have mouth dry gel ready and some thing for the flem you said.

can you tell me the week by week plan i should take into consideration. how much food a day and water do I take in.

than you for any up dates you can give me and if you think I can continue with out a PEG PORT let me know if is it an individual thing.

Can you tell me as the treatment will now finish the week before christmas, will I be in any state to join friends for christmas dinner or will I be to sick for that.

Hi EzJim, I have not forgotten your lovely heart felt post, yes I'm not totally isolated from friends as a matter of fact, I have many friends here in Thailand, the New Spain, I owned a home in Spain for nearly 20 years and the friends I made there many of them have now moved here, as it is much to expensive in Spain and you can hardly live on your pension there.

Also I have many friends at my work, but I do not want to mention the word cancer as there is some taboo when your teaching children here, thinking you can give them some illness, so I am playing it low key at work and only telling a few trusted and wonderful people. working here is the key to my survival no work no money no nothing Im then finished.

I'm very fortunate to have my ex business partner living quite near by, who is in some ways rough Diamond and quite a rock for me, at this time, as a matter of fact we have both been through similar problems in life and sickness, so he understands well, but I dont want to burdon him to much with my problem, as he has his own life to live.

yes I'm very positive now, but what I will feel like if i have been up all night feeling sick and have to force my self to work each day, then I dont know what I wll be like.

You can contact me any time and we can compare notes as I to will need some one, who has been through all this trauma to help me understand what to expect and then fight my way to the other side of the rapids onto land again.

Fortunately I have never been the lonely type and the funny thing is, all my life I have been surrounded with loving people, some times to many so its wonderful here with as many or as little as you wnat, but what I do need is some one in my days of sickness to be near, but just this time owing to personal problems and bankruptcy over a bad time with the last recession, I am alone, but no problem in Thailand you can soon be surrounded with people if your well enough and want to be.

Yes this is the most amazing forum with wonderful strict advice i love it others I have joined are so slow you could wait for weeks for any answer, feel free to contact me any time Ill be here 24 hours a day to chat on Hotmail msn.

Jon,

Good to see you have a start date and are finally able to plan out your treatment and recovery. I can tell you that none of us here can give you a day-by-day, blow-by-blow summary of how your symptoms will develop. This is such a personal disease. It�s effects and the effects of the treatment are completely different for every one of us.

I can tell you that the first month was not that bad for me, but others at my CCC started having problems with pain and eating inside of two weeks. I later formed very painful ulcers on my tongue that others never got. I was able to stay with solid foods for about 6 weeks, then had about 3 weeks on the ensure and VHC and now am back to soft foods.

I was relatively pain free until treatment was almost over and then got hit by the tongue ulcers and a very sore throat. You have to prepare for the worst and pray for the best.

I think you are asking all the right questions and I think others will contribute some answers that may give you some guidelines, but we�ll all be partly right and partly wrong.

My prayers are with you as I work in South America and know how tough it can be to be in a very poor and different culture while your ill. I generally try and get the next plane home, but have been stuck in bad places while deathly ill, it�s very scary.

Kelly

Well I have been coming and going from the Hospital for a Month now with a bag of bills to which i have just been able to pay with 2/3s so far help of my dear Brother and his wife.... and at last I am now getting near to the actual treatment.

They have brought it forward because my neck node is growing so fast, I have spent over $1.800US already with Doctors fees and the bulk on MRI Scan and today my PET-Scan and Cameras put inside of me, more needles yuk.

So now comes the roller costar ride, Radiation and Chemo from 5th November more bills, they say it will cost about $1000 US a week from here, for 7 weeks if I can keep the costs down, plus I have to have a few teeth pulled, or thy cant do the treatment for some reason....more expense, with a private dentist, as I found him quite cheap, with that later today, not looking forward to it at all, I hate dentists. By the time this is over at least I wont be worrying about needles much any more.

They seem to think I wont need a PEG so Ill see how I go, as we go along and they seem to think Ill be able to swallow, I dont take to much notice as the Thai people can put up with a lot more pain and the feeling of being uncomfortable, then we would, as they are taught not to complain.

But if I was in a Western Conutry, it would cost thousands more, by the time I'm finish, so at least if it keeps me alive, I have to keep up my strength and continu no matter how I feel.


Yes Thanks Kelly211,

Most people will not understand there is such a lot of difference being sick in a third world conutry, even though here in Thailand they do have all the latest facilities, as good as if not better then the Uk in some ways, but on the down side, there are some things you dont get here,
Ill keep posting may eb some guys are interesyed even though they have been through it all before themselves, but from here, it all sound horrendous the road I travel from here on.

Hey Jon
seems like all is underway at last,but it also sounds as if you are getting yourself really wound up.I know its easy to say,but do try not to as this will make everything seem so much harder for you.Just try to focus on the fact that what is happening is going to extend,maybe even save your life.It must be awful to be so consumed by the financial worries and i am sorry you have such an added burden,but once the treatment gets under way i am sure you will find your mind more focused on the fight ahead of you.

No one can predict accurately if you will have eating or swallowing difficulties so i would just say if you find yourself struggling tell them sooner rather than later,you can still get a PEG once the treatment has started.

Good luck next week and keep us updated.

love liz

Thanks so much cookey....yes I have just had my teeth taken out well some and I can tell you that was not fun, so I am ready for the fight ahead, its all ok untill you react to the treatmnet negatively, cant stand being sick, let alone being violently ill with it or any pain so Ill see how it goes and report when it happens good or bad hope i get some advise.

"yes I'm very positive now, but what I will feel like if i have been up all night feeling sick and have to force my self to work each day, then I dont know what I will be like."

Hi, Jon -

Projecting and worrying about what might happen takes energy away from dealing with what *is* happening and creates a feeling of hopelessness. The best you can do is take things one day at a time -literally. You can prepare practical aspects for your recovery - food and supplies you may need, for example. Still, you can't prepare for every eventuality because no one can predict the future. But you will have an arsenal of supplies at your disposal to help you.

I know this is easier said than done. I believe you're doing the best you can under the circumstances. You seem organized, so I think planning the practical is something you're already doing. That's your strength. Work from your strength.

Good luck. I'll be thinking about you next week.

Marlene

Good post, Marlene. You're right - you cannot plan for the unexpected but Teacher Jon, it sounds like you've tried to think of everything. Now, pull your strength together, say a prayer and go forward. Glad your treatment starts soon - my positive thoughts and prayers will be with you along with so many others here on the forum. Keep in touch.

Nancy T

Hi Jon, It's hard to talk for someone else but we all seem to. I just got out of the Hospital again from a few days of my mouth wanting to leave my body and go on it's own. Tomorrow I meet with 2 of my Drs about needing surgery to have some dead bone removed from my jaw. THey gave me 2 more scripts while I was in there and they do help some. Methadone and morphine. I am down again to the 171 lb range too. This they don't like either but you can only take so mi=uch pain. I'm glad they have some plans for you now and hopefully, this will improve your life style. I had to have all of my teeth removed and it's no fun losing the ability to eat FOOD> LOL. I never ate in sips before. Have a good day Jon and take care, Your buddy JIM

Thanks again guys, yes I am now wondering whats in store for me.

Well today was the day for my team of doctors to have their planning meeting, and how they are going to cure me with the minimal invasion of my salivary gland s and voice box and other healthy areas.

They have now made their assessment of the treatment and seem quite happy they can hopefully cure the problem, even though it seems to be quite a fast acting 6 cm Mass from my Lymph Gland, they say that can be good as it�s the slow growing ones that are not so easy to secum to the treatment.

First I must have a few days in a private room for softening up the mass and then monitoring how it is responding then start with the radiation.

All in all I am more happy now as you can imagine when I started down this road, you think your dead or very near to it, but I think I can live with an 70% chance of living.

I also met some survivors as they have a sort of survivors club on a Thursday and what a treat to speak to other, who have gone through the same as me and a lot worst, some of them with more than 5 years well and free from any new signs of danger.

So I have now given them my half a million baht and hope they don�t want to much more after, at least I get a very nice suite for the money.

So I�ll let you know what happens next, what the doctors did say, is they will be aggressively attaching the Tumor and then giving me a lot of extra Drugs, to make up for any nausea or Pain, as my one worry is that I cannot talk and I am able to continue life as much as possible.

At the moment all the wonderful plans and diner parties, I had planned for Christmas are on hold, as this will be the end of the treatment and it can be a difficult time, we will see as they said every one responds differently.

I�ll keep you informed Thanks for giving me an ear to speak to. Going down this unknown river without a paddle .

So wondering what is going to happen rom monday when I have chemo and radiation for the first time, hope ic an eat ok may be not.