200... It would appear so! i may have a porcelain complexion but i'm not actually made of porcelain! She said she didn't want to give me an infection *lol
I had a blister when i went through chemo, and it was day 16 - when the white blood cells are at their lowest. In the space of about 4 hours i'd been rushed to the local hospital with an ankle like a baloon an a hole in my heel! & since then they've been extra careful of me! I've tried explaining my immune system is probably better than all of theirs now! but they don't get it Apparently i'm still fragile!

Hi Chelle, I know what you mean now by not fitting in, I did something to make me laugh, I invited my 2 best friends and partners for dinner and gave EVERYONE 3 Teaspoon one for each course.
I gave them the starter of soup and started eating and eventually on said "Paul we have no cuttlery" Oh I said "I just presumed everyone the same as me" Paul

This message has been edited. Last edited by: Paul,

Not been on this forum for a long time but all Chelle's writings appear to be very human and funny - keep it up girl. I finished my treatment just over 2 years ago now with R/T and Chemo and left with little saliva but no mouth operation so I was lucky. I remember in the early days I asked the consultant 'what about my singing career? Will this be affected by the treatment?' He looked stunned and said 'Oh I don't think you will be able to do that - I didn't know you sang...' I said 'Well, no I don't but I was thinking of taking it up!'

I have just now been able to go back to playing badminton every week (difficult with little saliva but water and biotene mouth gel helps) and doing something 'normal' again is a great boost to my confidence. I do know what everybody means about studying the menu to see if anything will go down easily though, and wine I can just about manage if I drink it with food but the first couple of glasses taste pretty grim but I soldier manfully on!!
My point is that there a lot of people a lot worse off than me and yes - things do get better albeit slowly , meanwhile life ticks on..
Best Regards
John

Hi John
Just read your post, talking bout singing!!this is my career,and I was told I wouldn't sing again, but positive thinking and determination proved them wrong.My biggest problem tho is the lack of saliva I had 2 dissections and both my salivary glands removed so as you can imagine trying to sing when your tongue sticks to the roof of your mouth or behind your teeth is no fun, then with all the lights on stage you dry up even more.
I am now 2 years post treatment and I am finding problems with my voice now.It is progressivly getting worse, weak and no power behind it. Its very strange as I can belt out a song and my voice is fine but low notes or slow songs I struggle to get past a croak
I was told my singing voice would eventually go but didn't realise so quick.......its very upsetting for me as this is something I love doing and its also my income.Trouble is I don't get any warning with it, my throat isn't sore, its frustrating.
John you also mentioned eating. This is a standing joke in my house now...the length of time it takes me to eat anything. Bread, chicken are a nightmare, I too have to think carefully about what to choose, think probably everyone in hereis the same.
Hey at least we can laugh at ourselves....we're the survivors

Take care
Tracey

Thanks John!
Not sure bout the human part...
That could be debated! *lol*
It's fantastic you're getting on well now, & you're so right about the normality.
So are you considered cancer free?
I've said that all along - there's someone wore off than i am.
Stay in touch, i'm sure people on here would benefit from your wisdom!
Take care,
Michelle

Tracey,My voice is affected a lot, it is now very deep and apparently sexy (according to lots of females) on the telephone, the only problem is their faces drop if I appear in person ha ha! I could make agood CD of Barry White covers no problem (without the weight of course, - the only white, stick insect soul singer in the world!) I am amazed you can sing with little saliva, just walking the dogs without biotene gel in my mouth gives me a very dry mouth so you are a star, no doubts.
Chelle,
I have just noticed how you must be compensating for a dry mouth - sore fingers! I see you registered on this site March this year and already have have sent 309 submissions!! to my 25 over 2 years!!! I bet you used to be one hell of a talker.. Love to all, John

I still am a chatterbox! Trust me! I could talk for England & always have alot to say for myself!
When i was off work i'd hover on the computer (far better than day time telly) replying to everyone on here. & reading up far too much information about cancer - and then wishing i hadn't *lol*
I know what you mean about the walking the dog thing. & double that with the sea air... You get the picture! You can't whistle em bnack so easy with dry lips!
Take care,
Michelle

Hi John,
Michelle is life of the party and all of us just love her posts (I also tried flirting with her!!!). coming to the singing part - I never had any aspirations about becoing a great singer but now with my voice ( Women find it sexy too!)and all the inane words they use for something they call music - I could become a hit. Luckily, my saliva is not a problem and I have created my own voice which is good enough to be heard by everyone without the use of putting my thumb on my tracheostomy. Though I feed through a peg tube (seven years now!), I have got pretty used to this alternate life style and keeping in mind my daily schedule of work outs in the gym and my daily run, my wife really does pump me with a lot of fibre and high protien stuff. Its reached a stage where I have to control my weight. A lot of people do get surprised (if not shocked) when they realise my problem and cannot imagine how I can keep up with them.
As Michelle asked - are you cancer free now (if thats possible!)as they normallt reserve that after waiting a period of five years.

Do keep us posted.
Take care,
Ananth

Ananth/Chelle, My story is pretty strange, as I said before I am lucky... originally I was diagnosed with squamous cell cancer of the back of the tongue and was told I would have a neck dissection where they would cut me from ear to ear, take out the cancer and replace it with a flap of skin from my forearm and I would be in intensive care etc etc..
AS you all know when u are diagnised with cancer you meet a team of back-up staff and consultants who are supposed to stay with you throughout the treatment and create some continuity and stability as cancer is a very frightening thing. However the week before I was due to go in they called me in and told me they could no longer do it at Bristol Infirmary due to lack of beds so I would have to have it done at Soutmead (another Bristol hospital)
This upset me greatly as I immediately lost the continuity and felt abandoned by the system.
However it turned out to be for the best as the new consultant was not happy with the diagnosis and in the week of the operation whilst I was in hospital he put me under and took some more biopsies and sent them away for analysis; his thoughts were that if it was not the cancer originally diagnosed then I would have no need for the big op 'just' radiotherapy and chemo so I was counting on him to be right.
In the meantime the original consultant came to see me in hospital and told me he was still very sure about his original diagnosis so u can see that mentally I was pulled from pillar to post.
Suffice to say that the new 2nd consultant turned out to be correct and I was saved from that horrendous op that you guys seem to have gone through. The 2nd consultant kept saying (indeed so did others) that I was 'too fit' to have the sqaumous cell cancer which made me feel pretty good at first (playing badminton, doing yoga etc, wlaking the dogs) but when I eventually questioned this he said this type of cancer is normally found in down and outs, meths drinking derelicts etc! which made me laugh - it turned out that I had naso-pharyngeal cancer which had somehow formed on the base of my tongue rather than at the back of my nasal passages so I have a lot to thank the 2nd consultant for.
Cancer free? Well you are never thought of as almost free until after 5 years are you? And then nobody is certain but all the subsequent camera up the nose check-ups have seemed okay. To be honest the worst thing about all this was the chemo which almost drove me crazy, they say dogs retreat to the back of the cave when hurt to lie low and that is metaphorically what I did, curling up into the foetal position and not wanting to do anything for days on end, I did not want to even get up to have a peg feed and had to force myself. I cannot remember much about those dark days only that I was probably a bastard to live with and that I am left with the feeling that this disease has a good attempt at destroying two people not just the one ill, I know my wife almost cracked up under the strain and there was nothing I could do about it as I was fighting for survival myself...Did I survive I ask myself? Are things the same as before??

So

John,
I had Undifferentiated Nasopharyngeal cancer in the typical back of the nose place. I had 6cycles of high dose chemo & 6&half weeks of R/T. They think it's related to the glandula fever virus. I didn't do too bad through chemo. I had a week of feeling c**p followed by 2 weeks of feeling normal. It was the R/T that knocked me off my feet.
What symptoms did you have that led to your diagosis?

Ananth,
All us ladys can't resist a deep husky voice! Purrrrrrrr

hello john i am waiting for what you call the horrendous op next week neck dissection graft intensive care ect i know only too well the fear and anxiety it seems such a big op for a small stage 1 cancer i think they must have got it wrong but i trust that my consultant will take great care of me and i have every faith in him i hav been told that i should not need radium which is such a relief as this too can be horrendous my doc says this can cause more tumours in the mouth . it is such a dreadful disease

Hi Chelle, I had difficulty swallowing and was diagnosed with a pharyngeal flap (or something - can't remember the exact terminology) and it was months later before I was seriously examined at the hospital with the nose camera where it was obvious that it was a tumour and quite a late diagnosis at that. I had 96 hours of continuous chemo via drip and then a break of 2/3 weeks and then 6 and a half weeks of daily R/T with weekly bouts of chemo which left me almost suicidal (if I had had the energy!)
The R/T was not too nice and I ended up with burnt skin hanging off my neck all round the area of the radiation at the end, don't remember it hurting too much though just throwing up a lot of mucuos as soon as it finished - have you still got your face mask - looks a bit gruesome out of context doesn't it??

Bev, You never know what might happen it might not be so bad for you as they always paint the worst scenario, all you have to be prepared for is for 3 months at least of hell where you retreat back into your shell and don't want to know anybody or anything. I went back in my mind to my childhood and semi-dozed and dreamed a lot of the time, anything in order to pass the time and get another day over with and another day closer to the end of the treatment and it is a cliche but the time does pass and you get over it but the minutes and hours fighting it seem a waste of part of life when you are forced to dip out from normal society.
I am back at work now after finishing treatment on May 19th 2005 and more or less normal apart from a dry mouth and an inability to eat certain foods with relish, as I said before I was lucky and actually went back to work in August 2005 working about 2/3 days and gradually building up from there to a full week.
You can get a lot of help you know, a government agency actually paid my wife to run me to work every day and take me back home (I work 54 miles from my home)and it was good as my wife works in generally the same area as myself so not too problematical, they would have paid for a taxi if necessary. They offered me all sorts - they wanted to pay me membership at a gym so I could build up my muscles again as they all went with the weight loss so it is worth investigating things like this as they kept asking me is there anything else you want help with like special computer supports etc.
Keep your chin up, there are lots of people on here who have got through it but you don't often hear from them as this forum is more of a crutch for frightened people who want answers and help and don't know where else to turn to. My own daughters thought it was a death sentence when I told them I had cancer but it so patently isn't, it's just a nasty disease the treatment for which often seems like it is still in the dark ages as it makes you worse before you get better!
Love John

Bev
Hi I know exactly how you are feeling about your impending surgery........I think we all in this forum know what u are going through at the moment. I myself have been through 2 neck dissections and I was not diagnosed with cancer, but very rare aggresive tumours which were borderline cancerous and was told if I did not have rt they would quickly become cancer.
I found this very hard to take in as I was not ill.But as John says it is a treatment which makes you very ill before you get better. But can I just say I am well, back at work, back singing,which is a miracle!! but still weak, I have lost my upper body strenght again due to weight loss.
Try and look forward Bev, the scars will heal and you WILL feel better, and we are all your friends and always here for you

Best wishes
Tracey