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"OCF Canuck"
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"OCF Canuck"
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John, sounds like you are doing well so far. Keep up the positive attitude, but don't be afraid to use us in the event you just feel like complaining. I had to do that a couple of times, when I didn't feel like I could burden my family, and it's a huge relief to vent now and then.


Tina
Diag: Aug. 13/12
T3N0M0
50% + glossectomy and bilateral radical neck dissection, removal of nodes zones I - V
Surgery October 11/12
Chemo/rad on hold due to clear margins and nodes
Sept 21/13 clear CT with anomaly thought to be the artery, being watched closely.
Dec 16/13 - anomaly confirmed artery, all clear
nickname: "get 'r done"
Plans: kick cancer's butt
Joined: Sep 2013
Posts: 32
JohnUK Offline OP
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HIya

Many thanks, feeling good today. Warned not to be complacent by the nurses. As a life long non smoker and given up booze as of diagnosis - just asocial drinker but not taking risks - I am told skin on neck and throat will be more resistant and quicker to heal but wont save me from side effects. Drinking 5-6 litres of water a day which helps flush the toxins out and doing all the lotions and mouth washes to help. Eating healthy and hoping to hit end three weeks before it gets bad, least that's half way through.


Life long none smoker, social drinker. Age 46
25 July positive node. Primary in left tonsil.
Neck Disection 27 Aug 20+ nodes removed, bilateral tonsillectomy.
Tonsil primary, other mouth, throat, tongue biopsies showed clear. Node breached but no evidence of spread in surrounding tissues or any other nodes.
T2N2aM0
Wisdom Teeth (all 4) removed mid Sep and Peg fitted first week Oct.
Started six weeks, 30 rads, six chemos total, chemo on Mondays and rads Mon to Fri on Oct 14th.
Joined: Sep 2013
Posts: 32
JohnUK Offline OP
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Hey all you guys - Cancer aside; what we do for fun, as people, work play etc. There is an acrobatic pilot here for example who also can dance darn well...I work in recruitment and enjoy my 1980's Porsche I am trying to restore and photography. What defines us beyond this nasty little disseise...celebrate!


Life long none smoker, social drinker. Age 46
25 July positive node. Primary in left tonsil.
Neck Disection 27 Aug 20+ nodes removed, bilateral tonsillectomy.
Tonsil primary, other mouth, throat, tongue biopsies showed clear. Node breached but no evidence of spread in surrounding tissues or any other nodes.
T2N2aM0
Wisdom Teeth (all 4) removed mid Sep and Peg fitted first week Oct.
Started six weeks, 30 rads, six chemos total, chemo on Mondays and rads Mon to Fri on Oct 14th.
Joined: Sep 2013
Posts: 32
JohnUK Offline OP
"OCF across the pond"
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HI
Started my series of six weeks radio, 30 rads and 6 chemos. The chemo every Monday.
So far so good and I'm on number 8 today. Side effects are grubby throat after rads and then a bout of lethargy for an hour or so and a nap. Eating stuff the body can use to build new cells, protein and balanced veg and fruit. Also fruit helps freshen the mouth and throat.
Neck looks sun caught...goes sore but regular aqueous cream restores it. Bit like a hard work out each day and when shattered being forced to do another.
I'm developing a trick of radio, small meal, an hours sleep, then feel a lot better. As ex military you will know how to manage your body when fatigued and catch cat naps which is helping me.
I haven't had severe reactions yet but told to expect it..think I will make week three and then be hit but hey, that's half way through!
This pathway is sounding very typical, op, tonsils out, then radio or radio and chemo to wipe out any malingering cancer cells.
The chemo is very good at sensitising cells too so rads have much more effect. I also spoke with a friend whose family in Israel are doctors and they said this pathway is typical of the treatments their patients had recommended and fits 'best thinking' internationally, although everyone is different so there are variations.

Bug the medics about managing side effects is what I did.

Let me know how you are doing.

John


Life long none smoker, social drinker. Age 46
25 July positive node. Primary in left tonsil.
Neck Disection 27 Aug 20+ nodes removed, bilateral tonsillectomy.
Tonsil primary, other mouth, throat, tongue biopsies showed clear. Node breached but no evidence of spread in surrounding tissues or any other nodes.
T2N2aM0
Wisdom Teeth (all 4) removed mid Sep and Peg fitted first week Oct.
Started six weeks, 30 rads, six chemos total, chemo on Mondays and rads Mon to Fri on Oct 14th.
Joined: Dec 2010
Posts: 5,260
Likes: 3
"OCF Canuck"
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"OCF Canuck"
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So glad you're doing okay it does get harder but hopefully it won't be too bad... wink take care


Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
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Posts: 32
JohnUK Offline OP
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Hanging in there, feel rough this weekend, very dry mouth and painful sore tongue one side as probably nipped it with teeth when mouth dried out. Easing a bit.. tired big time and eating helps saliva. Reckon I can handle week three but after that will be shattered. Week two left me in bed all Friday PM and light meal and slept until Sat late.. Sat now and gone to lay down at seven PM. I think the trick is recuperate when time allows and then throw oneself into next week. Good news is next week is week three so least I shall make the half way point at end of next week and not be to bad until I hit the last three weeks. My paperwork says Tx and all this is precaution against microscopic disease and any cells that are left but not detected. Keep reminding myself I am in a good place and have met many who have so much more to deal with.


Life long none smoker, social drinker. Age 46
25 July positive node. Primary in left tonsil.
Neck Disection 27 Aug 20+ nodes removed, bilateral tonsillectomy.
Tonsil primary, other mouth, throat, tongue biopsies showed clear. Node breached but no evidence of spread in surrounding tissues or any other nodes.
T2N2aM0
Wisdom Teeth (all 4) removed mid Sep and Peg fitted first week Oct.
Started six weeks, 30 rads, six chemos total, chemo on Mondays and rads Mon to Fri on Oct 14th.
Joined: Apr 2013
Posts: 319
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Posts: 319
Hi John, You've definitely picked up on the secret handshake here; that is, take it one day at a time and don't think about the next one.

You've learned how to adapt to unforseeable changes in your life and routine, an invaluable lesson and like most of those, not a cheap one either.

And you are programming yourself for success when you remind yourself that you are in a good place; and that no matter how bad it may seem, someone else is dealing with matters that are unthinkably worse than your worst imagination. Life is ever thus.

I learned that lesson in a hospital room at Clark Airforce Base when I was medevaced after being badly shot up (very thoroughly and badly gut-shot, which is not a pleasant experience by any means.)

My first night there, I spent in a room with one other occupant, also a medevac case. Only this young man had been close to a mortar round going off and lost one arm just above the elbow and the other, just below. He lost one leg just above the knee and the other, just below.

He had 3rd degree burns over 30% of his body, and had been shot through the voice-box so speech was impossible for him.

Seeing the pain and suffering in his eyes, and the helplessness in his eyes was an experience I hope never to experience again and would not wish on my worst enemy!

Best of luck to you, Compadre! You'll get through this and can then proudly wear that famous shirt! You know the one, the BTDT shirt, for Real!

Bart


My intro: http://oralcancersupport.org/forums/ubbt...3644#Post163644

09/09 - Dx OC Stg IV
10/09 - Chemo/3 Cisplatin, 40 rad
11/09 - PET CLEAN
07/11 - Dx Stage IV C. (Liver)
06/12 - PET CLEAN
09/12 - PET Dist Met (Liver)
04/13 - PET CLEAN
06/13 - PET Dist Met (Liver + 1 lymph node)
10/13 - PET - Xeloda ineffective
11/13 - Liver packed w/ SIRI-Spheres
02/14 - PET - Siri-Spheres effective, 4cm tumor in lymph-node
03/15 - Begin 15 Rads
03/24 - Final Rad! Woot!
7/27/14 Bart passed away. RIP!
Joined: Sep 2013
Posts: 32
JohnUK Offline OP
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Hey Bart
Cheers for the boost. I wore a uniform in teens and twenties in good ole days of the cold war where the UK only had a problem in Northern Ireland, no less dangerous when boots are on the street than anywhere else. Showing my age now...it was the eighties.

Strange but after a heartbeat moment of shock when told 'cancer' I was shooting questions about my enemy at a fully automatic rate the poor ole consultant was speechless.. probably the wrong questions and not the 'promise I will live types' thank god'. The hackles went up and I have since never felt so aware since I was 20. My view is, learn all you can, learn to play each 1% chance you can I your favour...unlike the military we don't get training and preparation for this battle and really do have rely on others but dealing with what I know and can influence and preparing to make that you can work as best it can in your favour, even if only by an extra 1% is worth the head space.

By BTDT do you refer to the been there, done it, got the t shirt? I have a friend in US who happened to have a school friend who is a Marine staying, hi shouted up in the background of a Skype call 'buck up, suck it up, kick its ass, win the bragging right for xmas'..that would be lame were it not from a Marine but I know that it was a heartfelt encouragement from a stranger put in the language of one who has walked a hard road.

Similar to you, I have seen guys hurt. A book I read called Walking Tall, by a guy called Simon Weston, is worth a trip to Amazon. Simon Wilson was a young Gaurdsman caught on a bombed troop ship in the Falklands War and horrendously burnt escaping as he passed friends shooting themselves as they burned. His journey was featured over years on TV, I watched the initial report a year before I got into uniform. This book should be a read for anyone facing a hard time, will make you laugh, cry and admire his amazing courage. When my life turns tough, for decades, I just reach for this book. Sure-fire cure for self pity and so uplifting.

My view, I feel aggressive in the extreme towards this disease and the assault on the body by poisons (they are helping) but if it is to be bad news now or latter my loved ones will see me fight like a tiger and go down like a king and be remembered always for strength and optimism and humour rather than hurt them by them seeing my fear and tears which I have. On my feet or on my knees, if I have no choice then be it my feet and one hell of a fight.

All the best.

Last edited by JohnUK; 10-28-2013 02:03 PM.

Life long none smoker, social drinker. Age 46
25 July positive node. Primary in left tonsil.
Neck Disection 27 Aug 20+ nodes removed, bilateral tonsillectomy.
Tonsil primary, other mouth, throat, tongue biopsies showed clear. Node breached but no evidence of spread in surrounding tissues or any other nodes.
T2N2aM0
Wisdom Teeth (all 4) removed mid Sep and Peg fitted first week Oct.
Started six weeks, 30 rads, six chemos total, chemo on Mondays and rads Mon to Fri on Oct 14th.
Joined: Apr 2013
Posts: 319
Platinum Member (300+ posts)
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Joined: Apr 2013
Posts: 319
Wow, John, you do get it! And yes, that's the exact shirt I was referring to.

My only comment, and probably an un-necessary one, is to avoid becoming attached to any outcome when fighting this adversary.

Have a plan for an outcome, but realize that just in war-time, every plan falls apart when the fan gets brown and stinky, and the environment becomes filled with painfully noises and whatnot.

Attachment to any particular outcome will only lead to disappointment if it is not the one you attached to, and that disappointment leads to UNnecessary suffering.

No attachment means no suffering from disappointment. Simple, really. And true.

You do everything you can do, but leave the determination of the outcome to the gods of war. The outcome will be what it will be and is governed by forces we do not control.

Good luck, mate, you're going to be OKAY. It won't be fun at times, but then, nothing is always fun, but everything brings moments of fun if you keep the attitude you are showing here!

Bart


My intro: http://oralcancersupport.org/forums/ubbt...3644#Post163644

09/09 - Dx OC Stg IV
10/09 - Chemo/3 Cisplatin, 40 rad
11/09 - PET CLEAN
07/11 - Dx Stage IV C. (Liver)
06/12 - PET CLEAN
09/12 - PET Dist Met (Liver)
04/13 - PET CLEAN
06/13 - PET Dist Met (Liver + 1 lymph node)
10/13 - PET - Xeloda ineffective
11/13 - Liver packed w/ SIRI-Spheres
02/14 - PET - Siri-Spheres effective, 4cm tumor in lymph-node
03/15 - Begin 15 Rads
03/24 - Final Rad! Woot!
7/27/14 Bart passed away. RIP!
Joined: Sep 2013
Posts: 32
JohnUK Offline OP
"OCF across the pond"
Contributing Member (25+ posts)
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"OCF across the pond"
Contributing Member (25+ posts)

Joined: Sep 2013
Posts: 32
Hey Bart
That's where I am re outcomes, 'meet with triumph and disaster and treat those imposters the same'. I'm in a pretty good place but long time ago said to myself to expect worse before it gets better and maybe more than one battle before the war is won.
Starting week four of chemo and radio tomorrow. Half way point of this wooo hoo. Mouth and throat sore but not overtly painful, more just on-going high level discomfort/ Got horrible mucosis from radio, so mouth full of spit...yuk. I guess they will bring the pain by end of next week but then I'm into a ten day count down to being done and then suffering but without the top up rads and chems as I recover...pain meds if needed and lots of bed, the radiation is a killer, saps ones energy. Interestingly, a few people on here and other forums who have been in the military have similar attitudes...focusing on dealing with what's in front of us, working to keep the mind from straying into that we can't control whilst managing the things we can, like horrible side effects. I think also we have an experience of endurance managing fatigue, refreshing ourselves with short naps when we can sleep, keeping energy levels preserved for harder moments, create little routines to keep our personal S%�t (isn't that what the officers call personal admin haha) together. Also, for me, wanting to know so much, asking questions, framing risks and responses.
Sometimes, you just have to gut it out though!!!!
For everyone out there, its a journey, the victories come after the pain. Lastly, deep inside, I know I have and am being tested and not been found wanting or folded.

John


Life long none smoker, social drinker. Age 46
25 July positive node. Primary in left tonsil.
Neck Disection 27 Aug 20+ nodes removed, bilateral tonsillectomy.
Tonsil primary, other mouth, throat, tongue biopsies showed clear. Node breached but no evidence of spread in surrounding tissues or any other nodes.
T2N2aM0
Wisdom Teeth (all 4) removed mid Sep and Peg fitted first week Oct.
Started six weeks, 30 rads, six chemos total, chemo on Mondays and rads Mon to Fri on Oct 14th.
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