Hi from over the pond. I'm near London in the UK and working my way through treatment for tonsil cancer.

Diagnosis July 25 after biopsies the week before. PET/MRI followed. Then neck dissection and bilateral tonsillectomy the last week of Aug. Nothing new on PET or MRI other then the neck node and tonsil.
Some delay in me presenting with general practitioner as I had flue same time lump started and nodes on both sides were up but left one didn't go down so six to eight weeks behind when I would have been into the doctor.

The node was quite well developed, but the tonsil where the primary has been confirmed hadn't changed in size, it was a little whiter. It did plump up before surgery a month later.

Surgery was left side neck dissection, modified radical so muscle and vessels left in place but all the nodes from top of head to upper chest gone. All clean apart form the one that had exhibited. Same node that serves the tonsils. Full tonsillectomy showed on left side tonsil infected and confirmed it was primary. Fortunately, no paralysis of the shoulder and out of hospital 36 hours after getting of the table.

Post surgery investigation showed no spread from tonsil although characterised as T2 as it was around 20mm in one direction but no capsular spread. Lots biopsies inside mouth, around tongue showed negative which was good news. The single lymph node had got quite big, just over 3cm and had breached the capsule but no sign from tests of tissue in region that anything had spread. Got characterised N2a. No distant spread got me an M0 - T2N2aMo

I was told initially 80% then 60% prognosis but then told post surgery that there is no detectable evidence of disease but there will almost certainly be remaining cells 'microscopic disease' that either are not turning nasty or there is nothing that can be detected so a mopping up process of 6 weeks radio, 5 days a week, with a Cisplatin as a sensitizer on the Monday of each week. So in all 30 rad and 6 chemo sessions concurrently.

I am with the NHS and no complaints re response times and speed things have happened but as they have limited time with patients I do feel a lot of questions need answering.

I am a bit worried as we have gone from a 80% expected prognosis to a lower one which I guess is as a result of the single node size and breach of capsule. I think my T string equals grade 4a which I don't read good things about prognosis wise. Then I am told it is all cut out and we are treating for a cure so expectations can be more positive, especially as no distant spread or evidence of any active disease post operation.

For extra fun, three weeks after neck dissection and tonsillectomy I had all four wisdom teeth out under general as part of prep for radio.

Where I feel information is vague is risk factors of distant spread at this stage or local reoccurrence.

Chemo/radio starts in two weeks (second week of Oct).

I am a social drinker, not excessive but above the 20 units recommended and a life long non smoker. 46 and reasonably fit. Likely an HPV type I am told. I have given up drinking as in future silly to tempt fait.

Anyone ben in a similar position? Would really like to hear your experiences.

I sure hope they will test for HPV. Won't change the Tx but will affect the expected survival percentages.

Welcome to OCF! Glad you have found our site to help you get thru the next phase of treatments. You are among friends here, its like a big extended family with members from around the world.

There are many things to prepare for prior to beginning treatments. Here are just a few things to do to get ready.....

Right now you need to focus on eating everything you like and not worry about gaining weight as you probably will lose some during treatments. I know your mouth is probably sore from the teeth being removed but push yourself. Get a hearing test, full bloodwork including thyroid and testosterone. Line up helpers. Nobody gets thru this alone so anyone who offers to help, write down their name and contact info. Tell them when the time comes you will call on them. Call the American Cancer Society, ask for a driver to take you to rads, and either $300 towards travel expenses or in the form of a pharmacy voucher (its ok to use for co-pays).

Two important things to remember thru all of this are everybody is different and will respond in their own unique way and the only thing you can control is your intake. Every single day you need a minimum of 2500 calories and 48 oz of water.... NO SKIMPING! If you skimp one day and think its ok you will make it up the next, you are wrong and will quickly fall into a cycle which can lead to dehydration and malnutrition. On chemo days and the few days afterwards push extra water to flush the poison out of your kidneys.

When treatments begin, pay very close attention to your hearing. If you notice even the slightest change inform your doc immediately. Cisplatin (very common chemo for OC patients) is known to cause high frequency hearing loss which is permanent.

Next thing to do to get ready is to eat. If you are slim, try your best to gain a few pounds. Oral cancer and its treatments can alter your sense of taste and ability to swallow. For most patients its temporary but it could be a few months before you can eat like you do currently, so eat now. You dont want to have cravings so enjoy everything now.

Get flouride trays made and begin using them. This can take weeks so do not delay.

Get your hearing checked and a full blood count including thyroid levels.

I hope I havent overloaded you.

Best wishes!!!

Hi John, and welcome -- I'm glad you found us. Christine and David are offering great advice.

I know it's hard, but please try not to focus too much on statistics. They're all made out of individual cases and there's no way of knowing where you as an individual will fall on the continuum.

Like you, I had surgery and am now in chemoradiation. The course of treatment we are on is very typical and the best preventive against local and distant recurrence.

I've gotten tremendous support and help from the folks on this site, and you will too.

M

hello John, You and I have about the same cancer, same primary same side. but mine was caught late in the game and got tagged stage IV. like mentioned above we all respond to treatment differently. With my stage they started with just Radiation and Erbitux in place of citplatsin as I am HIV+ and my blood could not take the standard treatment. You have found the best place for support and experience. Not from me but I see you have made contact with ChristineB. she has a lot of info that I have found to be invaluable. So welcome. and post often for best results. Shawn U

Ditto to all of the above. I'm not one who knows anything about the medical side, but can offer support as cheerleader for you to get through this. You won't be alone, we are a big supportive family and here for you.

Hi John, and welcome!

I am a newbie here myself and have almost the same cancer as you do (mine is thought to be T2N1), on the same side, but definitely HPV+. I will have my wisdom teeth out in two days and start RAD in 2-3 weeks, so everything very similar to your situation.

I can not offer any advice as I am still learning about everything involved but can certainly offer support as I am in a very similar boat.

I hope you get tested for HPV fairly soon. From what I understand,SCCs positive for HPV have better prognosis and respond to treatment better as well.

Best of luck with everything!

Hi Ambra
Sounds a very similar story. My node had got to around 34mm so quite big with a breach of the capsule but when everything was out I got told no malignant spread and next step is to kill of any cells that are left so technically
I am clear but of course some cells will be lurking around. The tonsil tumour has progressed 2mm tail developing but no sign of spread outside capsule so rest of mouth is clear.

Wisdom teeth wasn't much fun, in fact knocked me harder than the combined modified neck dissection and tonsillectomy (both of them). It was three weeks after the neck dissection so maybe I hadn't quite got over that.

Tip, get a baby toothbrush as small lone is easy to clean with and not disturb the sockets that are healing.

I have friends in Fl, just found out one of them has throat and colon cancer.. radio working on his colon at the moment. Another friend over here in UK just had her two year old diagnosed with bone cancer.

Once we open up it is shocking how many people have either suffered from cancer or have a family member who has. In a way it is encouraging as so many see it through to good outcomes and it isn't the death sentence the disease once was.

I am doing the paranoid about any lump or bump at the moment and probably made myself sore poking around my jaw. Desperate to get the rads on as it feels like progress rather than waiting. Oct 14th is the start so will keep you posted.

All the best,

John

HI Nancy
Thank you so much for encouragement. I'm in a good place post surgery with tests showing that mouth and tongue are clear and tonsil hadn't breached but the lymph had.. Post up I am clear at the moment but high likelihood cells that haven't started to go bad so need an aggressive clean up. Frightening time as noticed puffy pea sized gland type thing under jaw but also this is where I was bruised to hell during wisdom so probably a bit paranoid. Was scared that when matrixed the T staging comes out at a 4a - 4 is scary. Was told that now all cut out to relax and not panic but just focus on next stage which is to stop any bad cells that haven't kicked off yet.
Thank you so much for your words.

John

Hey Shawn
Good not to be alone! How did they get to a stage 4 for you..I was told I wasn't an advanced stage and sometimes the T staging for head and neck can put you in a four when in fact a prognosis is much more like a 1-3 stage. My T2 was due to the tonsil being 20mm in one direction but was still contained in capsule with no spread (lot of biopsies at time of operation around mouth and tongue) - consultant shrugged and said although it had started to grow quick, it hardly showed any growth a month earlier but was just pale, that being contained still was to him as good as a stage 1 as far as he was concerned. The node was quite big by comparison, 4mm and had just breached but tissue all around tested clear. That got me an N2a, I guess 2 for size and a for the breach. I was shocked when al taken together I fell to a stage IVa.
I have had really good care, but our NHS despite being very god has lots of patients so not always had long enough to talk t consultants.
DO let me know how your journey goes. Im in on Oct 14th for six weeks chemo radiotherapy.

All the best


John

Hello
Thank you for the feedback..is worrying suddenly working out the combined T and N dropped me to 4a. Consultant did say that my tonsil tumour measured just enough to get me a 2 when in fact it was no more dangerous than if id had been a bit smaller and got me a 1 because it was contained, now cut out and no extra capsular spread plus rest of tongue and mouth biopsies clear. He said he'd had people with half the size tumours that had spread and breached which were more dangerous.
Lymph node wasn't good, breached capsule and 34mm so got me a 2a there.
I guess I got myself very hung up on the numbers..

Thanks again.

John

Hi
Getting my work up week before rads start. No one had mentioned Fluoride trays, will check those out.
As you can see fro my responses I am wrapped up in the stage 4a shock even though neither tumour alone would be more than a 2. I haven't had staging properly explained, not sure if my consultant likes to keep to individual cases but also spotted couple letters to my GP, one was T2N2M0 and the other T2M2aM0 not to mention had written up with a transposition to right side. Typing error but not what patient wants to see so made sure everyone knew which left we are talking about...
Very confusing at a time when so much is happening and the brain is battered so not everything sinks in.

All the best and thanks again.

John

Many thanks David
WOW, you sound fit man! I'm not that fit myself but likewise a non smoker all my life. Apparently this is something that counts in our favour a lot.
I think maybe I am having a huge panic re the staging and stats verses what my consultant is actually saying - which post op is all very good news. Also that although a stage 2 due to tonsil tumour size it hadn't spread or breached whereas consultant said he had seen much smaller tumours breach into the tongue or other places which was more dangerous than a 20mm one that was still contained.
I'm very short on technical information, need to intellectualise what is happening. The facts, character of it and so on. Knowledge, good or bad, specifics, is what I haven't had too much off from my team. I do feel they prefer to avoid hard talk or maybe are still judging if I can take that as some people I know wouldn't want to hear anything and just go along with what they are told as more information might be scary.
Long and frightening path no matter how well we maintain dignity and poise I guess.
From this and other forums I do see despite the hard times many have that so many are there with a helpful encouraging word or shared experience. At a time when we would all be justified in being selfish and 'me' focused there is so much compassion and selflessness displayed.

All the best,

John

John - your rads start date will be my rads end date. I surely will be thinking of you. I understand the paranoid thoughts. Daily, sometimes min by min or second by second, I have to take my thoughts captative and live in the moment. Even if the moment is not great...I just don't want to jump ahead to any paranoid thoughts. Best wishes.....

John, the staging is just a number. Don't get too wrapped up in it, as numbers don't define us. Mine was T3 due to the size, etc., but, here I am a year later, still carrying on and living life.

The panic about lumps and bumps will always be there. I currently have one on my shin (yes, that's weird), that I'm in a bit of flap about, but I try and remind myself that it is getting checked, and stressing about it won't change whatever it is, and I'll deal with whatever it is.

Don't let this disease define you. You are more than statistics!

HI Nancy
Sounds like you have been through a lot. I have read a bit about primary being hidden or sometimes undiscoverable. Even that sometimes the body beats a tiny primary but before it happens it starts something somewhere else.

I have this plan shaping up, for the future, to develop a bit of a map as to how to make the body as hostile an environment as possible for cancer, I guess this means health, fitness and diet.

Trouble is the NHS, no one has had a conversation beyond 'good results from surgery', breached capsule but tests show no spread as far as can be detected from node' and 'tonsil tumour hadn't breached but was bigger than expected' so 'we have to tackle any cells left but there isn't anything we can detect right now'.

I then get glimpses of letters drafted to GP that have the staging T string but no one has sat and explained this and what poorly defined margins are.

Public health care moves so fast, like a conveyor belt, not that I feel I am being neglected, it has moved quick and my treatment I gather form forums and research is on target with leading protocols but a bit more information would be great from consultant.

I'm going to raise this in discussion with him. I think also they are fearful of maybe wrapping up to much technical speak in case they scare the hell out of someone.

Must keep in mind the quick operation, neck dissection and bilateral tonsillectomy has got rid of the tumours and no spread elsewhere in mouth and throat so that is a lucky break.

Many thanks
Tough time and I feel in dark a bit with consultant who hasn't got into the detail other than to say great surgery etc., and no signs of further spread. The target I am told now is to clear up any microscopic disease. I will feel so good when I get some and rads on. I cant stand inactivity and want to get into the fight so to speak.

PEG and chemo prep next week so really need to chill and have a week without hospital visits and relax before next weeks prep and briefing.

All the best,

John

Yes and all the best to you as you relax this next week. We will see you here again....

I always did the same, relax, rested up, and had few good meals with a drink or two before take off.

Hi Paul,

Looks like you have been through it. My nature is to anti up for the fight and then want to get into it no matter how tough. Spent a few years in uniform when armies wore green in good ole days of the cold war..have a 'tackle it' mind set.

Unusual but I have found a much much more positive mind set here than main UK forums. I have half American, dads side although raised in UK. US side, half bro in LA, cousins in NY and friends down in Fl.

That's the spirit! Yeah, I basically been in continuous treatment for four years to hell and back, but I was born a fighter, and doesn't matter if I win or loose, well it does, I'm a sore loser lol, but that I put up a good fight.

Hey John, Sorry I left out that the stage 4 was due to met. to at least one node. in the lower left neck. Sad thing is that my HIV specialist thought that it was a simple clogged salivary gland. So it sat their getting stronger and bigger for 4 months until I got on with my companies insurance HMO. Kiaser, not sure if you have heard of them but they are the biggest HMO in California and beyond.

Hope you are having a good day, Shawn U

Hi Shawn
Mine came up in April, same tie I got cold, flue symptoms and both sides of neck nodes were up then horrendous flu for two weeks followed by two weeks recovery and a follow on chest infection. Left node didn't go down and then slowly reduced but not completely. GP gave me antibiotics for a week to clear up chest infection. I went back two weeks latter as still small bump from left node that the started to grow. Thing is it was active probably late March to early April and I didn't have it out until end August. I presented 8-10 week after I would have done if no flue. Ironically, the primary was, until the last four to five weeks before surgery, no even making tonsil bigger, just showing a lighter white pinky greyish shade when first looked at in ENT.

So it had around six months to grow, had just breached but no sign growth around it and tissue tested clean but may be cell transfer. Frightening that if aware Id have been three months ahead of the game. I try hard to politely mention this to everyone to build awareness - I feel I have that duty. My classic car club, taxi drivers, friends et all - I point out the warning signs and that 80% neck lumps in adults are cancer.

I'm told on phone today that staging for head and neck isn't quite like other cancers. My T2N2aMO should not be looked at as a 4a which some matrix show and in neck it is typical that it has got to a node as that's how we mostly find out. So often if it has the primary is still very small and treatable more so than perhaps a single tumour that has already breached and is inoperable. Was also told the SSC tends not to spread other than locally in a particular hurry.

In the UK there are around 7500 head and neck cancers a year and tonsil primary is a very small number of those so I guess there is a lot still to be understood. There is anew policy in UK to treat head and neck in adults as cancer unless proved otherwise so now when presenting at GP there is an instant referral to head and neck for inspection, biopsies, PET and MRI. Adult neck lumps are assumed to be cancer until proved otherwise.

This sounds a good policy as it fast tracks stuff. I was GP to ENT in 9 days, five days for PET, MRI, biopsies and then three days after results. On the operating table in 20 days from there. Post op results ten days latter and prep for radio, chemo, etc all done in a 20 day gap to allow neck dissection to heal enough to handle rads.

Where abouts in Cal are you. My half bro is in LA.

Hi John, where are you being treated? I was at the Luton and Dunstable and found the staff there very good and did manage to take the time to talk things through. Don't forget your head and neck nurse and the Macmillan Nurses, who will be able to answer a lot of your questions. Wishing you all the best with your treatment.

Welcome and sorry you are here. Please find out if its HPV positive. It won't change the treatment, but more info is better than less. I see you are getting the PEG. It good to have but use it a little as possible. Try to eat and drink as far into treatment as you can.

Your next battle will likely be neasea and constipation. It might feel like you are being assulted from both sides. Take the time now talking with the generals and get the battle plan set. Stock the ammo dump with weapons of their choice and keep them close. Make sure you supply line are clear. Driving my become difficult, so line up some fresh recuits and have them at attention in case you are pinned down and neeed evac pronto. And what ever you do don't skip meals. Alway hit the mess tent. Keep your canteen filled at all times and hydrate when ordered.

Sorry but you have been drafted and you are going to war.

Hi there in Ohio

I did once wear a uniform for a living and pretty much that's how I am viewing this, get the kit sorted and then go for it. Have hospital transport over here so get picked up and dropped off. Have blender at the ready so if really bad I can still try and sip stuff.

My staging is similar to yours, except a T1 primary, was still contained in tonsil but had grown a bit so got a T2.

Been having a bit of a paranoid week and thinking too much, have pea sized bump upper neck and jaw area, prob a saliva gland or maybe bit of tissue scaring as the neck dissection is major piece of work or my dental surgeon might have been a bit rough, loads bruising from lower left side wisdom, other three must have been easier.

It is a bit like fear before being deployed!|Going through keyed up and ready to bored to just wanting to get into action...inactivity and waiting is corrosive. Shall content myself cooking up a storm, blending and freezing emergency rations. Lots soups, sauces etc...trying to think of stuff I can generate some texture in to make it interesting when taste buds take a whack.

All the best,

John

Hiya Mandy Rose

I am down in Essex..but it doesn't show (for our American friends here, there are things called Essex man and Essex woman - think Jersey Girl and you'll get the picture lol).

Everyone's really good but all moved so quick...probably a lot cant be answered until post op and all the results writ up.

Re staging, with other cancers stage 4 are scary but in head and neck the combined primary and node appear to put most of us in that box as generally head and neck doesn't get spotted until a node pops up. When my lump in neck exhibited and was first checked in ENT the only tell tail from the tonsil was it was a slightly lighter shade pinky red than the healthy one.

Only started to grow around four weeks before surgery which was a good 13-16 weeks after neck lump started to show, then go away then came back to stay.

Rather hoping I can manage without the PEG..from what I hear it is a bit pot luck, some can manage without and some use it a little towards the end.

John

Hello John:
Greetings from across the pond. I'm new to the forum myself having just been diagnosed with SCC and HPV.

I don't have any knowledge to share with you, but I do have time to read your story, learn from what you and others have to say and hopefully keep you cheered up along the way.

Welcome to our rather large family.

Hi Tony,
Hang in there, it is harder at first I found when investigations and results are on going. I start six weeks of rads Monday, with a once a week chemo thrown in to.
Just been learning how to maintain my feeding tube as most find rads knock the throat hard and fall back on the feeding tube from time to time.
Its a scary time and lots to take in it can be exhausting.
Keep in touch, share the journey..
Are you still flying?

John

Welcome, we al start and learn as we go with this. Non smokers are shocked when I tell them I have never smoked.

Started radio and chemo this week. The week plan is one chemo and rad on a Monday then rads only Tuesday to Friday. Having Cisplatin, didn't leave any strange side effects, a little sickness due to constipation as I was given pain killers for the peg insertion that do that and should have been given the other drugs to ease it. That aside the effects are lethargy. After the third rad I found I needed to get home have a cup of tea and lay down and grab an hour or two sleep.

Skin is holding up, a little red and I can feel tightness after rads in throat and neck and get a bit of an ache at the target site which I am told is great as it shows rads are hitting the spot. No problems with eating yet although jaw is tightening on one side, already was as side effect of neck dissection and the wisdom removal was worse on lower left too - ouch.

Five more weeks to go, so far 1/6 chemos done and 5/30 rads. Technically I am Tx as everything removed in neck dissection and tonsillectomy so all this is to kill anything that cant be detected.

Feels good to be in combat with it rather than waiting. My little advice is, role with it, let the treatments wash over you and focus really hard on managing the side effects as early management apparently means less discomfort latter and loosing a few hours sleep when you really need it isn't fun.

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.

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.

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!

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

So glad you're doing okay it does get harder but hopefully it won't be too bad... take care

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.

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

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.

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

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

JohnUK, Truly a man of few words...

;^)

HI Bart
I must be loosing the ability to use the keyboard lol. Had said, I think those of us who have had a spell in uniform have been in situation we are not in control of so focus on the details we can influence and work the odds for outcomes in our favour whilst recognising we cant pin our hats on anything for certain until all is done. Plus of course managing discomfort is part of the profession! You hit the right tone with adjusting and adapting.. my diagnosis came when I took a month out to travel having left one job and had a nicely paid, promotion, better role lined up, in between wooooo shock diagnosis so job offer withdrawn.. finances trashed and as I was about to look for a mortgage that is out the window for a while as I am high risk borrower as far as banks are concerned. Having the financial commitments of a reasonably well paid single man I went into panic mode for a short while then quickly realised 1. I have no control so don't sweat hat I can't change right now, 2. Reassemble ones priorities fast. I pretty much put my battle head on which is 1, crap yourself, 2. re focus on what you can control, 3. chill out, you cant avoid it so take a deep breath and organise oneself in ways you can and manage things you can predict or didn't expect as those challenges arise. 4. It will probably get worse before it gets better so mentally prepare for curve balls to hit hard and hurt. 5. It ain' over till it's over so keep fighting, every second counts.

John, man, I love you, man because you get it!

Every one should copy your advice/philosophy/rules numbered 1-5 at the end of that message, and memorize them. Those, my brother from another mother, are definitely words to live by when you join this group!

I would add, for the benefit od all but you and Tony (and all of you who nodded knowingly but remained silent,) the following:

a. Get your posterior to the nearest CCC as soon as possible. Reasonably, that means that after you've had a DIAGNOSIS FROM A BIOPSY. NOT AN OPINION, BUT A BIOSSY!

b. When you to into any meeting with any medical specialist (your doctor, you MO, etc.,) about your situation, be it the initial, or any subsequent issue concerning your situation, BRING NO EXPECTATION OR HOPES. KEEP YOUR MIND OPEN!

The natural human tendency is to expect the worst. Well, my friend, you have no idea what the worst is (although you may have imagined something horrendous,) nor have you any idea how much your vision differs from reality!

Write this down: The reality is never as bad as the fear you have.

Doing this is tough, no doubt. But if you focus your mind on that (having no expectations about what you are about to learn), you have nothing to lose, and everything to gain. You will have no disappointment should the news not be the happy news you want; and nothing to lose should that be negative.

Here's the secret handshake: Reality may be unpleasant, but a) it won't be nearly as bad as you fear, and b) it will soon be over and the worst will just a memory, and c. it is what it is, reality. Do not fear reality, deal with it. It will never be as bad as you fears.

Life is good. You may have to look around to see this, so do so until you find it!

Spoken by a member who knows, incurable and 2.5 years into Stage IVc, a group with a zero percent 5-year survival rate. And this ain't my first rodeo with zero chance of survival.

Oh, BTW, yesterday, I just had a load of radioactive micro-spheres of radioactive beads implanted in the right lobe of my liver (where my current metastases reside). There is a new technique of interventional radiology that has shown great success at life extension for liver cancer patients, and is repeatable. My MO is very pumped, and so am I as no chemo is involved.

After two years of near-continuous chemo of one form or another, I'm glad to learn that I'll probably be free of the universal side effect of fatigue.

Life is good!



You may experience loss of function. In fact, you almost certainly will. So what, you won't go through life without life extracting some price from you before you finally check out of the net. This is just one of those situations.


c.

I have met a few guys who have had the implants over here for colon and liver and apparently results are really good without too many or any horrid side effects - worse so far for me is loss of taste from chemo. Some things taste of nothing, some I can get a little hint of taste from, green veg, dairy products, jelly... and others taste metallic, mostly potato's and starchy foods and lastly water, water tastes rank...

Bart - you are awesome - and likely - your liver glows...

Thanks Cheryl!

Man, was I in for a surprise! I though for some strange reason that I would be getting an Alpha Particle emitter. Nope! The agent is Yttrium-90 and it is a very strong Beta Particle emitter.

Alpha particles (basically a helium atom w/o an electron shell) cannot pass through the skin, so all the radiation would be contained within my body.

However, Beta particles are high-energy electrons and are able to pass through the body. For the first time in our 12+ years of marriage, we've had to sleep in different Bedrooms because she cannot remain within 3' of me for the first three full days!

Fortunately, this has a very short half-life and by a week, the radiation will be practically undetectable.

So far, no side effects whatever! Woot!

Hi John, Just spotted your post so want to say hello from this side of the pond. My dx and tx is not quite the same as yours but not so different. I have found that the NHS treatment is pretty similar to that in the other countries represented on this forum, but we do seem to have less ability to get our medics to part with information!

I am 2 years ahead of you and living proof, along with many others here, that this is a doable and survivable treatment. I still have some swallowing challenges but otherwise I am back to my old lifestyle, although I eat a much healthier diet and have an altered attitude to life, for the better I think though I despair at the rubbish that the big food companies persuade us to eat!! (I am a bit obsessed about food now).

Hang on in there, you are heading into the worst part of it, which will continue on for a while after the last radiation. One thing that I was not told about was the tendency for the jaw muscles to tighten up and cause trismus. I discovered this when I started eating again and discovered that I could not open my mouth wide enough to eat a banana! If you have not been told about this ask your Speech Therapist for some exercises, which will be much more effective starting now rather than a few weeks down the line.

Sally

HI Sally

Yes, it does sometimes feel like one has to 'pull' information out of the medics rather than have it 'pushed' to us. Partly, they are overwhelmed I think and moving people so fast through the processes sometimes. Also, head and neck involves quite a few different teams and disciplines that hand one along so sometimes I wonder if one medic thinks the next will do the brief.

For me, I wanted full on details, type, characteristics, how it likes to spread, where it might go, downside if expectations where not as bad as post op outcomes. Likewise, early on there is a lot of investigation before the full picture. Mine was a bit more advanced by the op stage but the knife was in five weeks after I presented so pretty quick.

I've been VERY lucky so far re radio and chemo, no worrying or extreme side effects, still eating, albeit with a lot of taste lost, still discern dairy, starchy foods taste like metal. I have some soreness in mouth but no had to use PEG to feed, just for some of the unpalatable meds and water for a couple of days, water taste awful although have conditioned myself to guzzle it normally.

I know I may get hit late, or in few weeks post radio so am bracing myself. This week is five of six, Cisplatin each Monday and radio Monday to Friday so one chemo and seven rads including today to go. More than anything it is just exhausting.

I have talked about food a lot, nurse of 50 years who takes my blood each week said twenty years ago were mostly smoking or alcoholic levels of booze leading to cancers like this whereas now people present much younger who have generally healthy or reasonably middle of the road lifestyles that shouldn't kick things off so early, not just cancers but liver problems, heart etc. Generally we appear as a population to be a lot more prone to conditions generally expected in advanced age rather than mid to advanced mid age.

Maybe we are allowing our immune systems to weaken, and becoming more vulnerable.

Been offline a bit, finished rads four weeks ago, was fine, had lost the heavy mucus and burnt throat for a week but then had some burns come up in the mouth second week post end of radio, been localised and very painful so not much sleep but getting there and feels like its at peak. Skin flacked on my neck but no blisters just red new skin beneath. I have been lucky but did put lot of effort into hydration, creams, mouth washes and no booze, cutting back tea and coffee and anything that doesn't help the throat for six weeks before the radio started so maybe won a bit of time before the effects got me.

Also, before six weeks chemo and radio I had neck dissection, both tonsils out, then all my wisdom teeth out under general anaesthetic and finally PEG installation under sedation too, so an op every two weeks. Busy three months and dead tired. Told all clear post op and follow up was to eradicate any cells or microscopic disseise - first work up on Jan 6th to check. Happy xmas all and will keep dropping in. Any questions ask away, three months is a long time in this racket so am here to share any tips on coping I can offer.

Everyone on here is very good, helpful, supportive and informative - great gang of guys and girls all.

Super super super!

Hi again, JohnUK,

I've been very low profile here lately myself, due to my own recent treatments.

Since posting about it in this thread earlier, I've had the same procedure on the left lobe of my liver (I wrote just after the Right lobe had been packed with radioactive beads called SIRI-spheres.)

I had no noticeable side-effects from the right lobe; but the left (two weeks later,) because it's quite a bit larger than the right, gets quite a bit more of the radioactive beads.

Enough more that the side effects (pain, nausea and major fatigue and weakness) are indeed, quite noticeable. In fact, they quite handily kicked by butt seven ways from Sunday. Enough so that I lost another 9+lbs. Now that doesn't sound like much, but my body fat was down to less than 10% and the loss was nearly all solid muscle.

[Everyone reading this nods sagely and observes "That boy should practice what he preaches..."] Very true, my friends, do not forget adequate nutrition - 2500 cal/day.

The experience is quite different that that from the machine, where you get 15 minutes/day; this way you get it 24/7.

OK, that's where I've been. I am well on the way back!

I've been going to the gym for some time every week since the procedure, but am only now able to do useful work there. I can see my body responding to the additional nutrition I am able to feed it, now that the (short lived, couple of days or so at most) pain and nausea are mostly in the past.

Until today, my workouts were drastically curtailed because every time I'd do a set of pushups or pullups, the exertion would bring on the nausea and I'd have to call it a day. Today, I got three sets of each: Pullups, pushups and dips! And no nausea! Fatigue is still a problem, but becoming less so. Woo hoo!

Of course, my sets were only 10 reps (instead of my usual 20) for pushups, and 3 reps for pullups (But HEY, those were perfect Airborne Pullups!) but I'll get back within a couple of months or so.

One step at a time, brothers and sisters, one step at a time!

One day at a time Bart. Hope everything continues to improve for you.

Thanks, and Merry Christmas, David!

It's all good, brother! I am definitely on the up-swing and recovering nicely.

I've extracted my head from my fourth point of contact and increased my nutritional intake appropriately.

As I said, it's all good. Every day looking down at grass is a good one!

Merry Christmas and a very Happy New Year to all!

Bart

Merry Christmas Bart

Thanks, Doolittle, and the same to you!

And the same to everyone here in our extended family!

Hello All,

I have been laid out and having a miserable time, better now. Rads finished end of Nov and I was OK for a couple of weeks then got a big hit, skin flaked form neck but luckily all good beneath so no burns outside. Inside was different, a couple of real whoppers, one on tongue and another high left in throat so spent mid to late Dec on soup and bread loosing 30 pounds.
Had three weeks max morphine and patacetomol.
Anyways, that's all done, had an all clear in Jan at my first check up so allowing for surgery in August I have had no detectable cancer since they had me under the knife. Next check Monday Feb 3rd.
The fatigue thing has caught up and unusually from feeling very pumped up through treatments and after (must be the body and mind being on full alert) I have done lots of the sleeping thing.
Neck is stiffer than usual so doing the exercises and unfortunately have a very obvious wobbly chin, they call it a dewlap here in the UK, its collection of lymph fluid resulting from neck dissection and rads. Apparently this starts to clear up but can take a few months.
Told have PEG out in next couple of weeks, never needed to use it so lucky there) which means I can get on with some fitness work too.
Has anyone here experience of the dewlap, its a common side effect. Massage apparently can help but I am conscious of lots of unregulated people offering 'beauty' treatments to help lymph nodes drain when in fact I have pretty much lost all the nodes on left side.
Hoping everyone I have messaged is doing well and sorry for being away a few weeks...was utterly whacked by the end Dec three weeks getting through the burns on the inside of mouth and around tongue.

Hey Bart
I trust you are well.. the rads got me in Dec, week 2-4 post radio finished I got big ole burn on tongue and in mouth so had two weeks living on soup and feeling shattered. Cleared up first week Jan and now just damn fatigued. Develop done of those floppy chins that apparently will sort itself out over weeks or months ahead otherwise looking forward to a good review at my second monthly check next week. End of Feb will be six months from surgery and so far no sign of any cancer since.

Hope you are doing well.

Hi John, thanks for the kind thoughts!

Brother, I am delighted to read that you are handling this so well! Not surprised, but definitely delighted! You are definitely a survivor!

I've actually begun to see some progress in my rebuilding work, I've regained 3/4 of the weight lost from the last procedure and I've started to add push-ups and pull-ups (tiny gains, but real ones.)

As the Davidcpa said, one day at a time. And for the record, I'm enjoying each of them.

Hi People,

Still battling along, had a whack this week, lots of fatigue and its starting to lift but felt steamrollered - and sleep pattern gone completely wonky. Bigger chin! Doing the throat and neck exercises, THEY WORK!

Hey Bart, impressed you are working out. Good to hear you hanging tough and enduring - that's what most of this is, endurance testing I think. If one can shoulder discomfort and has a mind set not to worry to much about something that has an end in sight then it can be done.

PEG out next week, that will make me feel less 'sick', never needed it. I lost 20% of my weight but had gone overweight before the start. Had my second monthly check last week, all clear, end of Feb will be six months from operation without detectable disease but elected for precautionary chemo and rads and don't want to go back again. I have been put on six weekly checks now. Early days but a six month mark is encouraging if not too much to get carried away with...

Still a bit sore and getting left side back to work chewing. It feels notably strange!

All the best to you all and will check in soon.

John

Very nice update John, really great to hear the good news. I know getting that PEG out will make you feel even better.

I just realized I have my first 6 month checkup (since surgery) tomorrow; so, I'm right there with you.

You're ahead of me some as I haven't started doing the upper body rebuilding thing yet, but have kept up the legs training via walking and lots of dancing.

I don't want to steal your thread, so I'll end with a hearty good luck, and don't be a stranger.

You might consider starting a new thread in the Immediate Post Treatment forum. I expect others will be interested in seeing how you continue to progress in recovery.

Tony

Hi John, you hit the nail squarely on the head, compadre! And I have good news to add to yours, as of my weigh-in at the gym yesterday, I've finally regained the 10 lbs I lost in the first three weeks following the loading of my liver with radioactive beads (SIRIspheres,) which was complete on 11/23/13.

When I get a bit more free time, I'll start a thread about this process; thanks for the head's up, Tony!

Effects of the radiation continue to surprise me, but they are mild and mostly inconsequential. Mostly I'm surprised that any of it is lingering this long. I have a CT scheduled for the 21st, and I'll get the results on the 25th.

Hey Tony,

Yes, need to get my head around forums and what where, don't worry about stealing the thread! Sounds like we have walked a similar path, I had a few ops in Aug to Sep...neck dissection, full tonsillectomy, wisdoms out under GA and then sedation for PEG.

Doc said that lot immediately before six weeks radio is a big factor to the fatigue as the body has just been battered for best part of three months non stop. I had the neck met that was more of a worry as it had breached where the tonsil tumour was contained still. But so far so good.

The best thing I did was from the get go stopped everything that was bad for my throat and hit the mouth washes they give so went into this as prepped as possible. All the things the docs and specialist nurses recommend to manage the side effects work well. Sadly, I recall seeing smokers having a puff between their hydration IV and before their chemo infusion...come on guys!

The taste thing recovers quick and as I needed to bulk up have had an unhealthy diet for a couple of weeks as a treat and now getting into much more sensible planned nutrition as want to start training and getting in shape. Have the niggling background fear of course but I guess that's normal.

I am mightily impressed Tony - I am 16 years behind you!

HI ALL

I'm still ticking along - had my April check, month five post radio, month nine from neck dissection and tonsillectomy that removed all detectable disease. Neck is still stiff, funny sensations and sag on chin from lymph drainage that comes and goes.

Looking for work but doors closed that were open a year ago yet am down to fourth and final selection on a couple of things.

Life slowly getting back normal, occasional anxiety and poking neck to much looking for bumps. This is a survivable thing with a short but hard road during treatments.

Feels a long time ago now, or maybe the mind doesn't want to go back there. A key feature is to keep positive and keep as fit as possible and healthy as you can, what you eat and drink, so can handle treatments as best as possible. Some I went through this with had treatment re planned.

Hows everyone doing?

Doing good. Just keep in mind that your recovery can take all of 2 years.

Ditto what dave said. Eventually as time passes any fear will ease somewhat... there's always that worry but it does fade as certain anniversaries pass and you begin to feel better. The neck dissection can mess you up... I'm still stiff though the swelling is gone now. and sensation is returning - slowly though I know it will never be 100% ;o) So glad you are doing well. I am too... ;o) hugs

Great to hear your good news John. Attitude is everything.
Kris is doing fabulously too.
Tammy

Hiya Guys,
Thanks for your support, another step forward, back to work. I work in Human Resourcing, on the agency side, and got a really good role so a bit chuffed. Two weeks on boy oh boy, was I thinking I was fit and over fatigue....wrong haha. Anyway, straight back to early starts and getting out of bed at five am. All good but unlike before I really have to factor early to bed nights in and Sat is a lazy write off - all doable and great to be back in the real world, months of hospitals and home sort of leave you a bit shell shocked.
Next check end June. Neck dissection is main trouble but not big problem, stiffness, soreness, bumpy where lymph drainage isn't sorted yet but it gets a lot better and of course wobbly chin but things tightening up slowly. The exercises the docs recommend for throat and neck before and post radio really work if you keep them up. Coming up to year since symptoms in June, Diagnosis July and neck dissection last week august. Feels very unreal... sort of out of a dream. Maybe that's a bit lie PTSD, the downer following the stress, adrenalin high of body and mind being on alert etc...
How are all you guys doing...this is tough thing but being positive and more than anything, positive, be strict and take control of well being, leave the rest to the medico's was my way forward.

hanging in there, went to a new job, not so nice people and was commuting horrendous hours, up at five and home at seven in the evening. Tough day and fatigued, chucked it for something local - clearly being a tough guy isn't always best. So far all checks good, Aug 4th is one year post op. Lymph drainage can go from tight chin to right old lumpy saggy chin and sensitive skin. Those just starting this journey, hang in there, be strong, the treatments are uncomfortable but do-able.

Hi John, came across your thread last night. I too had tonsil cancer was diagnosed 19th September last year. Finished treatment 4th Dec 2014. I'm not as well informed as you re the staging , was originally told my cancer was a stage 2T but then when I was referred tonThe Christie specialist cancer treatment hospital they restaged it it a T4 which has freaked me out ever since! If I remember correctly they said it was due to the severe trismus I was having at the time. I had 30 fractions of radiotherapy and was scheduled for 2 cycles of Cisplatin but was only well enough for 1 which also remains in the back of my mind. Had an NG tube was told this was a better option than the peg as quicker healing time and encourages you to still swallow . It was in for 9!weeks I was very sick throughout all the treatment lost over 2 stone , weight stable now 8 months on. Had the raw sore neck but healed well just a slightly different colour to the rest of me, also have some swelling and tenderness under the chin on the left treatment site. Left side of the tongue still giving me trouble been told it's scar tissue and still early days so be patient! Had a clear MRI think it was May time and a couple of clear visual checks all very encouraging. I'm trying not to get too hung up from statistics and read daily advice from Christine, David , Tony , Bart and others who are far wiser and more knowledgeable , I visit the site every day a great source of comfort for me. I rarely post , always worried that I'm doing it wrong as not very experience on the computer and never posted in a forum until I discovered OCF. My taste still has room for improvement but know it can take up to 2 years and I have no sweet taste buds which is a shame don't half miss cake biscuits and chocolate!! On a plus I have no problem fastening my size 8 jeans now! Lol . I have some saliva but still a problem been on Pilocarpine tablets 6 daily they have really helped in stimulating my salivary glands and I've had very few side effects just the odd clammy feeling now and again but benefits far out way side effects for me personally , did read a lot of reviews before asking for a script as wasn't told about them by my consultant , and many people have not been able to tolerate them so I'm lucky in that respect. Not sure if you've tried them but may be worth a go. I know what you mean about being anxious and constantly checking things I still need lots of reassurance got a spot on the roof of my mouth had it since finishing treatment had it checked twice ( not biopsies ) told it could be a blocked salivary gland and it doesn't look sinister but I'm still not reassured I want it gone or at least a biopsy but nobody really listening going to mention it again at my next appointment in September will be more assertive I think! I don't know if my cancer is HPV related hope it is! Like you avid non smoker rare drinker I mean maybe 1 a year but never touched a drop since diagnosis and never will again . Back at work still doing 3 days had a 3 months phased return using 2 days A/L worrying a bit about how I will manage full time going to see about dropping a day ..... Believe we now fall under the DDA and have more rights , fortunately I work for the council and they have been fantastic with me , no complaints there or about our NHS. Lots of little niggles in the back of my mind but now have a completely different attitude to just about everything , appreciate life , family so much more and don't stress about work and bring stuff home anyone or am fanatical about cleaning the house it's all about looking after me now . Oh and I'm having acupuncture weekly at the hospital not sure if it's physically helping with the dry mouth as on the pilocarpine tablets too but will continue for as long as they allow me too. Any way I hope your doing okay and I'm sending my love and positive thoughts to all the wonderful people on this forum who give me hope and inspiration daily. I'm going to make an effort to post more often as I get so much from reading others just not sure what anyone may get from reading mine! Best wishes everyone , love Di