Forum menu
Last Wednesday I got news from the Royal Marsden Hospital that is not so good. My tumour on the side of my neck is malignant. It's an un-differentiated infiltrative tumour, and they don't have a specific name for it. It's almost certainly a radiation induced tumour caused by the radiotherapy 20 years ago that helped get rid of an adenoid cystic carcinoma when I was 21.
Surgery will be on 31st October at the Royal Marsden and will last about 10 hours. They'll aim to get clear margins, but will not get 10mm as usually aimed for, but more likely a few mm, because of proximity to facial nerve/ear/palate/carotid artery. They'll remove part of my jaw on that side. A plastic surgeon will be present and will perform the facial nerve graft and will fill the dent with a graft from my thigh. Post-op I'll have facial paralysis on that side. My jaw will be very sore and it will be difficult to open my mouth. The team will keep an eye on the healing of the dent graft before I leave. I'll be in hospital for up to 10 days, aiming to return in time for my 6 year old Rowan's first ever dance performance on stage to 'Splish Splash, I Was Having A Bath' with his dance class. Can't wait!
I'll then have about 3 weeks of rest and recovery at home in Ludlow before IMRT, a more accurate less destructive type of RT. Due to inaccessible RT records from 20 years ago (the team contacted my consultant from back then but they've not been able to get the records) I'll then have a carefully calculated amount of RT for 6 weeks. It's possible that this may need to be done with me staying in the hospital so they can keep a check on my eating and drinking. This will most probably be done at the Marsden, although they are looking at the possibility of University Hospital in Birmingham. There will then be about 3 weeks of post-RT side effects, which I may also need to spend in the hospital. So that could be 9 weeks away from home around Xmas and NY time, a tough time for all the family. The whole 'treatment package' as they called it should end mid-February 2012. 3 months later there will be a scan to establish a base level of information on the status, then 6 months after that another to compare it to and regular scans after that to keep an eye on things.
The surgeon Mr Peter Clarke was excellent last Wednesday, and talked us through each detail in a clear, easy to understand way. He often shows autistic tendencies - a lack of emotion - and I can understand why. It must be tough telling patients this sort of news. But he was superb, though still unemotional, and I have a strong confidence in him and his team.
After this bad news I asked for something positive to end on. He became animated and said they think that they can cure it and they have a 30% chance which gives me some confidence to push my fears away. He also said that I'm extremely unlucky to have got a tumour after RT - 1% to 3% of RT patients get one. He added I'm extremely lucky to have made it 20 years before it actually happened. He also added that after the treatment finishes we basically need to cross our fingers and keep an eye on things. So some perspective comes from all of those comments.
There are some tough times on the big climb in front of me, but I'm trying to approach it in the way I approach my rides. Push myself to my hardest and relish moments along the way - a blast of cold air from the northerly wind, the snap of a broken branch, or the stunning silence of stopping in the middle of a snowbound forest with only my thoughts.
It's a tough day today, and they come and go. But underneath everything I've got my energy and spirit, and my wife and my son are holding my hands, and I can feel them with me.
Thanks for reading.
I really dont know what to say, other than good luck and hope all goes well 🙂
My heart goes out to you. thats a very tough place to be.
I have nothing to add but be positive. Good luck
Deepest sympathies mate and best wishes for the road ahead.
Keep us posted, okay?
Good effort fella.
Your ability to write about it speaks volumes about your character; you don't need any platitudes or empty good luck wishes, but I hope it goes well.
Keep us informed.
Best of luck
That's all pretty shit for you and tough times ahead for you and your family and I hope the process has a positive outcome.
I think you'll find stw posters will be with you all the way on this one - can you keep us updated?
Very emotional and beautifully written! Masses of luck for the journey ahead! The uphill climb is always worth the downhill time!!!!
Thoughts are with you and your family fella. Be strong and kick its arse!
Best of luck.
Cakefest,
Be strong and good luck ,be positive
Oh sh*t that's not very good!
Good luck 🙂
Keep going fella, all the best.
We will all cross our fingers. Very best of luck and good wishes.
My thoughts are with you and your family. A friend's going though something similar at the moment and I've been humbled by the strength they've shown.
All the best . fingers crossed here for you
Tears in my eyes at work here. I echo the comments above in really not knowing what to say. All i'll add is that I wish you all the very best of luck with beating the cancer, and in truth i've never meant anything more.
I reckon if you keep the attitude you have there, you'll have the best chance possible of beating it.
All my best
Neil
The brave, matter of fact way you explain what is wrong with you and the procedures involved suggests to me that cancer doesn't have a chance against you. Good luck and keep us updated.
I hope you kick that cancer's arse...
Best of luck, keep positive and I hope it all works out for you.
Invoke the power of Bullheart and fight the bastard.
Hope everything goes well for you mate. All the best.
X
All the best, you seem to have the mental strength required for the fight ahead of you!
Good luck. Take heart (not literally) from Bullheart. If he can do it, so can you.
cakefest - you've already shown how strong you are in your approach to this.
Keep going, you have your family with you, and enjoy every special moment you can.
Take care, wishing you the most healing and positive outcome.
Good luck fella. Chin up and all that.
All the best to you cakefest. Make sure you lean on us if you want/need to.
In between all the bickering and nonsense on here, there are moments that make me sit up. This is one.
Go to and give it what for..!
And, remember, in those dark moments when you feel you can't share with those around you, come back here. Everyone will be pleased to hear from you and do what they can to help.
Last thing: go for a ride right now, and feel that fresh air, look at the views and listen to the silence. Take that with you into the breach.
Best of luck. Think positive as much as possible and keep as active as possible. Recent research show physical activity helps beat it. I look forward to reading about your positive progress.
As said above, being able to express yourself is a really positive thing. Good luck!
I'm not sure if you're in the mood for humour, but you could wear a big white beard over Christmas....
I can't imagine what you're going through, be strong.
Good luck
Lousy news.
Brilliant read, amazing attitude!
Crosing everything that can be crossed.
Best of luck fella. 😀
ourmaninthenorth - MemberGo to and give it what for..!
And, remember, in those dark moments when you feel you can't share with those around you, come back here. Everyone will be pleased to hear from you and do what they can to help.
This ^
And you have read Bullheart's thread haven't you?
Best of wishes....
That does sound like bad news and absolutely terrible, my heart goes out to you. You did say 6 weeks, SIX WEEKS, in Birmingham, didn't you? 😯
Good luck with the other stuff too. Be strong.
Between you and Bullheart this stuff doesnt have a chance!
Best of luck and enjoy Rowans dance performance!
You did say 6 weeks, SIX WEEKS, in Birmingham, didn't you?
Oh, the hugemanatee!
Good luck with the big C. Despite the mocking of Brum, the cancer treatment there is very good in my (depressingly frequent) experience.
Keep up your positivity, be strong and best of luck.
[i]"Go to and give it what for..!
And, remember, in those dark moments when you feel you can't share with those around you, come back here. Everyone will be pleased to hear from you and do what they can to help."
[/i]
And some more of the above too - it helps ........
That is rubbish news, very best of luck to you. hope everything goes smoothly.
live long and prosper
iDave - Member
live long and prosper
Aaarrghh! An alien. (You're in the wrong thread....)
Be strong, be positive & never give in.
Good luck
CB - 2.5yrs into remission
reading your post mate it clearly is not going to beat you.
good luck man.
This sort of thing really puts everything else in perspective.
Hope it turns out well for you.
hope it all goes well, the bit where you want to go to yours son's dance made me cry.
*hugs*
lots and lots of them
Lots of positve thoughts being sent your way. Keep strong. Love and light.
I don't find it easy to articulate my thoughts in these types of thread, so all I'll say is keep your spirit and energy and beat this shit. You know you can.
And take note of Bullheart's experience.