A year ago today I had my operation. This was following diagnosis of a squamous cell primary cancer to my right tonsil, with a secondary to one of my neck lymph nodes. Radical neck disection, removal of RHS lymph nodes, cutting through jaw, removal of primary and replacement with a flap from my left forearm. A familiar story to many on this forum.

Surgery took over 7 hours. Intensive care for a day, hospital for 8 days altogether and then home. First day at home - disaster! Speech suddenly goes indistinct, I look in the bathroom mirror and see that my flap has come undone down one side! Back into hospital and they decide they do not want to attempt a repair but wish to review it after my radiotherapy course.

A couple of weeks at home and then I'm back into hospital to be fitted up with my mask and into 6 weeks of daily radiotherapy. I also had 2 sessions of chemo (cisplatin) which knocked me for 6 both times. As I was having some difficulty eating anyway, I agreed to have a PEG fitted from the outset. Was given Ensure as a diet supplement.

Radiotherapy wasn't too bad until the last couple of weeks. Then mouth got realy dry, throat got sore and I did get a fungal infection which was cleared up fairly easily with some drops. In my last week of R/T the skin on my neck broke down. I lost over 2 stone during this period.

R/T finished at the end of October, but it took a couple of weeks until I really started to recover. I was given a zinc supplement which brought my sense of taste back fairly quickly, but I couldn't stand alcohol or chilli for quite some time. By Christmas I could manage a fair range of food and beer, but not wine.

In November they had a look at my throat flap and decided that it could be saved. Minor op in early December and I was stitched back together, although in the process my flap ended up smaller than intended which has left me with "hyper-nasal" speech.

Back to work in January, family holiday in Cyprus at Easter and then I ran the London Marathon in April.

1 year on and I've got most of my weight back and I'm as fit as I was before this all started. I've got some interesting scars and my speech & hearing aren't great - but everything is far better than it could be!

You have been on one long journey. It gives those of us still riding the roller coaster confidence that it will end sometime and we will be able to get off.

Well done.

Thanks Angie

Writing the story mad me realise that I've nearly forgotten some parts. For me, being a survivor involves not dwelling on things too much, but I'm determined to keep calling in here from time to time.

I also realise that I got off lightly during the R/T phase - many on here suffered far more than I did.

How are you doing?

Hello again, Thanks we are doing well considering. I am sure there are lots of the year you have forgotten about. In the short time I have been on the ride there are things I have forgotten about, I think we sailed through Chemo, then I read other peoples stories who are not as far down the line as we are and I think, oh yes, that happened to us. I am sure if you go through all your postings and put them all together you will have a much more detailed story than the one you have told here.

It never fails to amaze me just how much the human body can stand, yet how frail we are at the same time.

Your story is very comforting to those of us who are only mid way through the journey.

Well done 200

thats some achievement

Regards
Dave and Sue

That's quite an acomplishment 200! What a long way to come!
Determination is the key. & you have it in abundance!
Inspiration like yours is just what we all need on here to boost out morale on a bad day!
Well done you!
Michelle

Much to my surprise, I didn't do a "2 years on" update.

Anyway, here I am 3 years on, pretty much as I was 1 year on. Still visit the outpatients every few months for my check, had a little mouth ulcer once which made me wonder but I was quickly reassured.

Good to see some familiar names still on here, and sad to note that a few have moved on.

Intersting news lately about alcohol and head & neck cancers, so I'll cut down a little now!

Well done 200 minutes,
Is that your marathon time? I am curious to know why they cut through your jaw and throat.I had a RND because of secondary tumours (3B or 3C I think) in my lymph glands. They had burst out of the gland which was v worrying. This was nearly 5 years ago.RT finished Dec 22 in 2004. I am very sensitive to spicy foods and curries. I love a medium hot curry but can only take a korma now. And as for chilli!!! How do you do it. All of my mouth, tongue and throat area was irradiated due to an unknown primary.

keep up the good progress - tony k

Wow thats an amazing update really good to hear you are doing well after three years. You did the marathon very quickly after treatment and I'm laughing at myself worrying about doing the 10K walk in September?

Take care

Ken

Tony
It was my pre-op marathon target time and the user name I had on a running forum when I joined this one. Achieved that target in the 2008 London Marathon, hope to get 3:15 next year.
Cutting through my jaw was to get enough access to remove my primary & fit the flap from my forearm in its place - I think this is fairly standard practice.
Spicy food - I'm still not quite up to the strength I used to go for - I'm now more Madras than Vindaloo!
Congrats on getting to 5 years - I guess you are no longer monitored at hospital?

Kenny
I was an active runner pre-diagnosis, which certainly seemed to help with recovery from the op. Radiotherapy slowed me down a bit, and I had to stop running altogether for about 10 days when my skin broke down as I couldn't shower. To be honest, I was also pretty weak at that stage anyway, so it was probably the right time to take a break.
Congrats on the one year!

Hi - less than 200 minutes?

ENT don't want to see me any more - hurrah!-
But I have an open invitation if I feel the need. Hopefully it will never be necessary!
Radiotherapy will see me every 6 months to monitor side effects of the RT. I have to let them know if I need any serious dental work in the future as the RT does weaken the teeth and the blood supply to them.

cheers Tony K

Hi 200 minutes Good to see you're doing well. Tony - how marvellous to be signed off by ENT. Congrats to Kenny on one year. In October it'll be 2 years for me.

Chris

Hi 200. I was pleased to read your story. As i have mentioned in the questions section my mother was diagnosed with a Squamous Cell of the Tonsil a few days ago. Could you advise what we should be asking on Friday when we see the specialist. I was feeling very down and scared so you have cheered me up no end, thanks!

Hi Tony

Congrats on your graduation! I love to hear stories like that on this site.

I'm hoping that, after my next visit in February (6 days after Flappy's 5th birthday), I'll be on the annual rotation at the University of Michigan. Five years seems like such a short time, but it's an incredible milestone.

Continued good luck to you!

Julia