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!
Original Post
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.
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
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. 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
Hi longleggedhair

I think the most important thing is to listen to the consultant, make sure you understand what he/she says & repeat it back to make sure.

Your mum is not in for an easy ride, surgery will knock her back for a bit, but (from my experience) the pain control was excellent. Major things from the op are fatigue and discomfort from having so many tubes, etc attached and being stuck in bed for days on end.

I'm assuming she'll have a temporary trachiostemy (ie a breathing via a tube inserted into her throat) in which case make sure she has lots of biros & several pads of paper (both go walkabout in hospital) as she won't be able to talk until it is removed (typically 3 days or so). You may like to ask about this.

You should ask how long the op will take, the extent of the surgery (will depend on how advanced the cancer is), when you'll be able to see her & how long she's likely to be in hospital for. You also need to know what you should bring in to hospital to make her stay as comfortable as possible. For instance she won't be able to wash normally at first, so face cleansing wipes may be a good idea. TV arrangements vary between hospitals. Books, magazines & a portable radio with earphones could all help. Depends what she likes, but variety helps to fight the boredom.

I do believe a major help to recovery is to treat the whole thing as a game/battle to be won and to celebrate every small milestone (each tube removed, getting out of bed, being allowed to go to the day room or hospital shop, etc.)

Hope this helps - anything else, please ak.

Dave
Now 4 years on!

No sign of any cancer coming back, but I was very ill at the beginning of this year with an abcess on my spinal chord in my neck. I felt much more unwell than at any time during my cancer treatment! "Industrial strength" anti-biotics do take their toll.

Anyway I'm more or less recovered from that, having regained the weight loss and got some upper body strength back. Left hand function still not great, but slowly improving.

Good luck to all on this site, and stay positive!

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