Hi,

This site is great! How nice to find people just like me.

I was diagnosed 08/01/08 with cancer of the tonsil at 35. I am terrified for my kids. The tonsil and tumor were removed in December as my brilliant consultant thought there maybe something there (I had a lymph node enlage - which came back a benign from a biopsy but my consultant still wanted to check throat as scans picked up nothing).

This year has been a whirlwind! I completed radiotherapy and chemo over 7 weeks last Thursday. I turned 36 during this time - my birthday really sucked! I have a PEG fitted which I was usng within 3 weeks and my mouth produces mucus. After looking on the internet it says recovery from this is 6-8 weeks - PLEASE TELL ME ITS QUICKER AS I AM REALLY STRUGGLING WITH IT! I long for a fresh mouth again that isn't drooling! I have been reading your suggestions for this but I cannot swallow anything so at the moment use salt washes and anti-bacterial wash. I want to escape it!

Now the treatment has stopped and I do't spend half the day travelling to Northampton and back to Milton Keynes I have been feeling scared and a bit depressed and I can't talk about it! What if this doesn't work? I have never been told what stage the cancer was - only that it was miniscule - 1cm. In fact 1 Oncologist said it was already probably all gone - I think this was mopping up - to make sure it has all gone and I was treated aggresivly so I WILL LIVE!

I can't talk as my voice is fairly damaged at the moment and because of the mucus.

How do I put a picture of myself on here?

Look forward to hearing from you all(sorry if I have one on a bit - I haven't been able to talk for a few weeks).

Love Chloex

quote:

How do I put a picture of myself on here?

Hello Purple Kitten

Welcome. Just email your photo to Krishan webmaster@mouthcancerfoundation.org and he will help out with this.

Best wishes
Vinod

Hi Chloe, I had the same problem as you when I was diagnosed. The operations and RT came at such a pace that it wasn't until after it all finished that my mental grief started. Too much time to think and all that.
I was only 28 and missed the bit where I should have been told I wasn't immortal , so it all got a bit too much. Never be afraid to ask your GP or team for more help, sometimes you need to get a bit pushy. It will get better but I think it's just a time healing thing.
Good luck, Hagg.

Hi Chloe,
I had a couple of large secondary tumours in my RHS lymphs which had burst out of the glands. My LHS lymphs were enlarged. I also had a cancerous tonsil removed. All sides of my neck face and throat were irradiated.
A couple of weeks after the RT I had a reasonable soft moist food diet.
Being optimistic I don't think you will need the PEG for too long after the RT has finished.
My saliva is still very poor and I am VERY sensitive to even mildly hot and spicy foods. As long as the food is moist (plenty of gravy or sauces) I have no trouble with my diet.
It is almost 3 and a half years since my RT finished - Life is now going on as normal.

All the best to you - Tony K

Hi Chole,
Though I am not too happy at welcoming you here on this site as noone wants to have this illness, you have hit the motherlode as far as sites to make you comfortable are concerned. All the friendly folks who have the same kind of problems or more will be more then happy to give you all the help they can.

From my side, I think I better keep out of giving any advise on this one as I am pretty sure it will not to be to your liking. Welcome again.

Take care,
Ananth

Thanks for the responses.

Hagg I totally agree about the mortal bit - I used to think I was superwomen - I am a single Mum to 2 boys aged 8 and 13, I ran a Scout Group, and worked full time - I can't do any of that currently and the boys are staying with my Mum

Tiny - spicy food???? N more indians???? I said to my parents today that I don't really think I was told about the side effects hoestly by the hospital - but then would I have had the treatment? I do wanna live.

Well it is good to come somewhere where people understand exactly what I have been through.

Love Chloex

Hi,
I know how you feel, i live in Rugby just up the road from you, i have had left side neck radical dissection and also left tonsil removed and 2 lots of chemo, i am 19 days post my last radiotherapy and have been lucky with eating the last 2 days i have decided not to use my peg and feed as normal with my family, i cant believe that even after such a short time that i could be anxious about eating again, its terrible but i have it to some extent under control, my saliva is also not bad now but was the same as yours you must for your own sake be patient or you will make yourself crazy with worry which is what i did i am suffering with really bad anxiety and bordering on panick attacks i, i have started waking up in the mornings from another crap nights sleep only to be thinking as my first thought that i am still going to die and they have not got all the bad stuff out, which i know is crap because of the way they went over the to with me on the operation and the chemo side of things.if you would like to talk then private message me and i will give you my number as i think you are as scared as i am /////was maybe..

quote:

Originally posted by PurpleKitten:
Hi,

This site is great! How nice to find people just like me.

I was diagnosed 08/01/08 with cancer of the tonsil at 35. I am terrified for my kids. The tonsil and tumor were removed in December as my brilliant consultant thought there maybe something there (I had a lymph node enlage - which came back a benign from a biopsy but my consultant still wanted to check throat as scans picked up nothing).

This year has been a whirlwind! I completed radiotherapy and chemo over 7 weeks last Thursday. I turned 36 during this time - my birthday really sucked! I have a PEG fitted which I was usng within 3 weeks and my mouth produces mucus. After looking on the internet it says recovery from this is 6-8 weeks - PLEASE TELL ME ITS QUICKER AS I AM REALLY STRUGGLING WITH IT! I long for a fresh mouth again that isn't drooling! I have been reading your suggestions for this but I cannot swallow anything so at the moment use salt washes and anti-bacterial wash. I want to escape it!

Now the treatment has stopped and I do't spend half the day travelling to Northampton and back to Milton Keynes I have been feeling scared and a bit depressed and I can't talk about it! What if this doesn't work? I have never been told what stage the cancer was - only that it was miniscule - 1cm. In fact 1 Oncologist said it was already probably all gone - I think this was mopping up - to make sure it has all gone and I was treated aggresivly so I WILL LIVE!

I can't talk as my voice is fairly damaged at the moment and because of the mucus.

How do I put a picture of myself on here?

Look forward to hearing from you all(sorry if I have one on a bit - I haven't been able to talk for a few weeks).

Love Chloex

Hi Chloe,

I'm so sorry you have had to go through this at such a young age but you will come out the other side. It can be a bit of a bumpy road but there's always something to keep you going and you have those two lovely boys - let them be your inspiration! My husband Neil had cancer of the left tonsil eighteen months ago and about an hour ago we left The Luton & Dunstable Hospital have been given another 'all clear' - boy do I feel happy!
The treatment is harsh and you will bumble along feeling seedy but slowly things will improve - don't forget this treatment has saved your life and so has your peg so see it as a friend.
Despite Neil having been diagnosed with type 2 diabetes a couple of months ago and then 6 weeks ago having a minor stroke - life is sweet.
Everybody deals with things differently but I know Neil found talking to friends and family most helpful - plus plenty of irreverent humour!

I hope you are soon feeling stronger and don't forget you are not on your own and dip in and out of this website and someone will 'talk' to you and understand.

We're off on holiday on Saturday (first decent one for 3 years)but I will try and catch up with your progress when we get back.
In the meantime - much love to you - hang on in there.

Margaret

What fantstic news - well done Neil!

I actually had a fairly good nights sleep last night and managed 2 x 2 hours sleeps! I went for a walk this morning round my Aunts village (I am staying with her to recover) and have been paying ever since! I knocked me for 6 so have been dozing and my mouth hurts but can't take any painkillers yet! ARGH! 20 minutes to go!

It is good here what lovely people.

Chloe, I used to think I could smoke and drink as much as I wanted and go on forever but you live and learn as they say.
My son from my first marriage was 11 when I was diagnosed, he lived with his mum, not us, but he handled it so much better than I thought he would.
I wasn't told half the side effects of the RT before I had it, dont think I would have had it if I'd known, 'spose that's why they didn't mention it. Hagg.

Hmmmmm - yes no more smoking - is drinking comletly banned or is drinking in moderation ok?

My 13 year old son has really grown up through this! He is a different person from the start when he was moaning about my throwing up - now when I apologise he tells me off! The yougest wants his mum back.

I guess your right about the side effects - I definatly wouldn't have done it if I had known about thm - but then would I? I don't want to di either!

Chloex

Hola Chole, Hagg and everyone else,
I have been through all the posts and have really not figured out where the problem lies. Blame it on my old age thats creeping up and almsot touching half a century!

As Hagg wrote he used to think he could smoke and drink all he wanted but he lived to learn and that was lucky that he learnt in time. I was a heavy smoker who made the drastic mistake of smoking during and after my radiation and chemo and the result is still here to haunt me forever. It created four fistulas(passages between the food and air passages - where all the food or drink one takes in goes directly into the wrong passage and could even drown you!!). The result is though I have decided u like my friend Hagg to become immortal - the side effects of all the nasty things I did have left me with no food passage and a tracheostomy through which I breathe and talk. As both the passages have shut dowm totally and would require a lot of time in and out of hospitals, decided against any reconstruction surgery and that means I remain "eating" anf "drinking" through my peg tube and have done so for the last eight years. I used to crave for eating as anyone else - but now am pretty much at home at get togethers etc - where I take my quota of 'soft' drinks and sit in a corner and pour them down the peg.
As hagg spoke about his son, I too have two sons who were really kids when I contracted the cancer and used to get petrified each time the doctors said i was a goner and the family had to gather around. gthis really made them mature really fast - but what it gave me was the pleasure of seeing both growing up - one into an adult at 18 and the other catching up at 17. I am glad I lived to see at least this part of my life as had I not got the cancer, I would still be married to my job and would never be at home. Both take so much care of me that at times I snap at them saying that i am not that gone that i cannot do things on my own!!.

One last point that I wanted to bring up was anxiety and panic attacks. This is all a part of the cancer package and you have to learn to kick it aside and that is by accepting that you have or have had cancer and have beaten the damn thing with your survival skills and will to live. You have already fought the battle of your life. What more can it throw at you that would be so painful - nothing , nada, nix! The clock tickson and does not ait for anyone and your choices are very clear - mope and spend all your time living a misery or decide you are going to enjoy life in its complete glory and live every moment. The more time you spend in the self pity zone or the why me? area - you are not going to be a happy person and thats not life for which you fought against the cancer. Think of the reasons you decided to fight and then think which is better - moping or living it up?

Enjoy your life Chole - a lot of people live only once - we have had the luck of living more then that. Just remember you are special and special people will always ensure they remain positive and happy through all the problems that life may bring.

So on that note - Dont worry, be happy, this is Ananth signing off.

With lots of love, xxx and my special hugs and let me also add a few roses.
Ananth

Hi Ananth,

Thanks for the love, hug and roses!

There are definate positives to come out of this. I stopped work after my 2nd op in Feburay and so I spent alot more time with my children. My work are being amazing with their support as I don't expect to go back til autumn and they will support me in this.

It sounds like you had a really rough time Ananth I gave up smoking when they told me they aim to cure me - I have been told this, so when I am scared I play back that conversation! There are so many survivors of cancer now days, so we need to think positive!

I AM GOING TO SEE MY BOYS GROW UP, GET MARRIED, HAVE CHILDREN AND I AM GOING TO ENJOY MY LIFE!

Love Chloex

Hi Chloe

I had my operation for tongue cancer last October. I gave up drinking completely for four months, but then asked others on this site for advice and decided that the odd glass of wine every now and again wouldn't do me any harm. I make sure to really enjoy every drink now I have so few! (Not that I was a big drinker before). I gave up smoking 29 years ago, so that hasn't been a problem for me but I remember how difficult it was to give up so I have every sympathy for smokers.

You sound as if things are generally going well for you considering what you have had to go through. I had a very low time soon after my operation and found it difficult when I returned to work in January but everyday life has taken over again now. If you ever want support or to let off steam you will find there are plenty of people on this site to listen!

Love
Gwyn xxx

Thanks Gwen - I woke up his morning feeling terrible after seeming to be on the mend for the last few days. In fact I was sick and I haven't been sick since sunday. I am really disapointed as I thought I was on the mend - O well I was told I would cook for 2 weeks after treatment and I have only just completed the first. Guess I am trying to run before I can walk - me impatient - never!

Off for a sleep - I sleep so much now........

Chloex