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left one job and had a nicely paid, promotion, better role lined up, in between wooooo shock diagnosis so job offer withdrawn..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!