Hello I am Nigel, from Devon I am 41, single and father of William 6 and Ellen 3. On the 19/5/2005 at 1045 I had confirmed to me that I had a SCC found on a tumour extracted from a Tonsil, which had spread to a secondary area in my left neck lymph nodes. I do not or have ever smoked, exercised daily for the last 35 plus years and had a very healthy diet.

In the last week weeks I have had the tonsil and impacted wisdom tooth removed and a very radical left neck disection which removed 32 lymph nodes and part of my left muscle base. As you can imagine still painful and today im off for my mask fitting for radiotheraphy.

Just wanted to say hi to you and hope to meet some new friends in the same position for mutal support.

Hi Nigel, Sorry to hear that you have cancer.
I never smoked either but had a man that smoked
in my face everyday. So the Doctors thought it
was second hand smoke. I had tongue cancer not
tonsil. Please keep in touch.
Cathy

Hi Nigel, welcome to our site your in good company. I was 54 when diagnosed. My primory was at base of my tongue,I also had it in my tonsil and large tumor in my neck. I had tonsil removed, radical neck disectrion and radiotherapy. Hang in there and keep us informed how you get on.
Maurice

Thanks for the support.

I went for my moulding today what and experience that was, with my neck being very sore and tender it was like wrestling!

Tomorrow I have the CT and the positioning so it is all happening very quickly!

Hi Nigel, This cancer happens that way all the time. Hang in there.
Cathy

Hi Nigel,
I hope you are getting some help with the children. I know it is emotionally drainig with all the test results and not knowing and a 3 year old can wear you out.

Good Luck Terry

Hi Nigel. Good luck with the Radiotherapy and prepare yourself mentally for the road ahead as radiotherapy can be quite painful and the associated effects very uncomfortable. Have you been told you will need a stomach peg? If you do then it is essential that your nutritional intake is cosistent otherwise the weight falls off and you get pretty weak. if your throat really begins to hurt then i found the best thing to use was cocaine mouthwash but limit the use of it as it cannot be prescribed too often. I had a six week course of radiotherapy directed at three points on my neck and throat so i was pretty burnt up at the end of it. with my treatment i did'nt start to feel the effect untill roughly two weeks in....and then i had to liquid feed for some months after. i don't know how much radiotherapy has been planned for you but if its aimed at more than one location then give yourself plenty of recovery time as it takes some getting used to and you may be left with a dry mouth as a result. fatigue is also a side effect of intense radiotherapy and can slow you down for months.The whole thing absolutely knackered me.My consultant played down the Radiotherapy and almost treated the event as nothing more than routine but I found it very tough and i wish i had known a little more about it beforehand as in all fairness, a consultant would rarely know exactly how it feels to be zapped with radiotherapy and how it leaves you feeling.
Two and a half years on and i'm pretty much over it all now, though still a little mentally scarred and the dry mouth thing is a permanent irritant. But...i'm still walking the planet and thats something to be grateful for.
Talk to various patients on the site about their own experiences with treatment and how they coped as people cope differently though there is no escaping the discomfort. I hope that what you need to have done does not prove too distressing for you and that you get through it with as little pain as possible.
Its not something that many people will experience and my message to your family is to be close to hand in those first few months when you are likely to feel at your lowest and to give you plenty of emotinal support and to make sure that you eat enough...albiet that it may have to be liquidised. you've had the surgery to chop the bad bits out and now the radiotherapy will kill off any other dodgy cells that are left lurking.
Be strong and keep us posted.

Hello Steve

Thanks for the reply and yes I read your reply and thought, yep that sounds like me.

They have discussed PEG feeding and they have discussed tube feeding which I have put in the back of my mind for the moment as I try and cope with the pain of the surgery as nerve endings come back etc.

Mentally I think I have some work to do, any ideas? because my mind is in denial.

I am still in shock, it was 4 weeks ago today and I never imagined it was this all that work, all that research, all those smoothies all those miles I ran and healthy life styles to have cancer has still left me dumbstruck how?

You know if you were here, and sat in front of me I would sit in front of you and say I do not have cancer. I have no ill feelings, no side effects, no pain from it. I honestly believe that I do not have cancer, how scary is that, when I know I do I have seen the lump and tonsil results.

I do however have loads of pain from an area of 15cm x 15 cm in my neck shoulder, neck I will not send you the pictures after the operation but they were very gruesome with the staples etc. and I am coming to terms with people looking at me with the scars. The neck has no muscle, that was stripped away so it is very sore as nerves run along my neck without any support, you can imagine by 6pm my neck has seized up and turning my head gets painful.

I had so much to do with my life and it has turned it upside down, Im not sure where I go with it now but I am sure I will live for today and not tomorrow.

Hi Nigel.
It sounds as if you are a carbon copy of me.
I am 43. I was diagnosed with SCC of the left tonsil. This was removed and a radical left neck dissection followed 2 weeks later. I had 33 sessions of radiotherapy and 6 all day sessions of chemotherapy (cisplatin). I finished my treatment on 13th December 2004. Now 6 months on I am OK. I would like to help you get through all this and would ask you to email privately if you wish. One thing I would say is to reiterate what Heathrow Steve said about peg feeding. It is imperative that you have the peg operation done NOW. As once you start the radiotherapy the last thing you want is another op, albeit quite straight forward. I must urge you to insist on this procedure as it will take you 7 days to get used to the tube. You will NOT be able to eat and it is much better having the tube feeding in place well before you give up eating.
Good luck. You have people here that will help you, and email me if you wish.
Regards
James

This message has been edited. Last edited by: James Bagnell,

Thanks for the advice. And it is advice after all we are all different and whilst welcoming it will add it to my databank and when the time is right, and now is not the time I will make my decision then.

Best wishes

I agree Nigel that knowledge is powerful. I had a nasal tube. I would not have known about such things if I had not read the acor listserv. When the time came a few weeks after radiotherapy had finished they just said we've been expecting you. But I knew what to ask for and what could be done as I'd read up on it. Nasal feeding tubes are considered less invasive than pegs so it is another option for many.

I was next to a lady in hospital who had had a peg fitted and 2 days later she fainted as something had gone wrong and found herself back on the ward until it settled down. So if you do opt for the peg I think the advice to have it put in well in advance of the treatment is good advice.

Whilst it suits many people I think people who have nasal tubes possibly move onto normal feeding again faster. Just my opinion. My nasal tube was in about 6 weeks. Pegs seem to be in much longer. Maybe it's the visbilty factor that made me want to get rid of it. I was just determined not to have a tube coming out of my nose for Xmas!!

You are right - it is hard to get your head all around this. You are diagnosed one week on an operatin table the next. I was in surgery the following week. So it's hard to take in. For me it only really sank in what had happened about a year later when I would catch sight of this new slender person on shop tv cameras and think who is that. It was also hard having occult cancer as it made it difficult to expalin to people I had cancer, but the docs didn't know exacty where.

BTW I never smoked ever, but the public have polluted my air. I think non smokers are sensitive to smoke for a reason - they really do have more sensitive airways/passages than smokers which is why non smokers are so anti it - it hurts us to be in the presence of smoky air, but try telling a smoker that - waiting for backlash here, but I don't give a fig. I'm really angry with smokers who think it's their right to smoke and all tat rubbish about rights and freedom. What about the rights of those who like clean fresh air.

So I agree - read up on all this and deliberate and ponder. Then live with the decision you make.

Thanks totally agree with you on the smoking thing.

As for feeding I feel that the debate has taken over my main reason for posting was too look for support. I feel the issues about feeding clouded the topic subject "Hello I am new"

I have discussed with the consultants and nurses feeding and we have a plan which is right given my circumstances, but whilst I appeciate the advice from others I would be grateful if we could move on and let me deal with my plan.

good luck with the plan Nigel and hope you are well organised for your forthcoming Radiotherapy treatment. Let us know how things progress.

Hi,Nigel
I guess you may have started your treatment. Please let us know how you are doing. I think maybe we were not giving you the support you needed initially. I have been through exactly what you are going through, we are here to try and help.
James

Well only 23 more sessions of radiotheraphy to go and two more days with cisplatin!

Lets be frank it has been hard, but still eating, have the opttion of nasal tube at teh back of my mind but food and weight are not issues at the moment.

All going well, side effects as described and more but hey that os life!