Tuesday, 27 April 2010

Last Post before the chop

So.....what to say...am off for my op in the morning, I'm supposed to get an early start so I can have the minuscule biscuit breakfast, so I need to go to bed soon but really am not able to sleep just now.

I've posted all the students retake stuff but had real problems concentrating on the marking process so I'll have to deal with that later.

I'm due to check in at 10am, get settled, tubes and drips inserted as needed before the op which will be "sometime" in the afternoon. I might have to finally allow the dutch medical service access to my old man to fit that catheter they've been dreaming of since last year....hope I'm out cold when they do that.

Its strange that people seem keen to know the time of the op, I keep being asked by email and so on...I honestly have no idea, I suspect there is a schedule at the hospital but I dunno..probably after lunch sometime, hopefully they will tell me when I get there.

I'm nervous, and of course stressed about this, so not knowing the time is probably a bad thing...bit like waiting for the hangman to come to the cell for your early morning walk and stretch. Then again knowing could be even worse as I count the seconds till Op time....argghh can't decide which is worse, knowing or not knowing.

Its not at all like all the other surgeries I've had over the years, none of which have ever stressed me out, partly I suppose because I needed them to relieve pain or discomfort...When you have an appendix throbbing away, you don't think of anything else but getting it out..now!

The enormity of whats happening is starting to sink in and its hard to explain..I got cancer...shit ok, thats bad I know that...and just 3 weeks to the day after finding out I'm having a big chunk of my jaw, with associated and much looked after teeth, removed to deal with it...

Its mindblowing really. I don't feel ill, have little to no discomfort from the tumour, no visible signs, no weight loss, no obstructions, nothing! My body is doing everything it should do apart from a little lump on my outer gum!

So surgery just seems to be a scary prospect for no physical reason....but of course there is a reason, if I don't do this, I'll die!!!

yup..theres a motivator for you! But still does not change the facts..I feel fine and I'm about to go under the knife and without the normal physical stimulus of pain or discomfort that usually proceed surgery, it feels very unnatural.

Still its a good way to get loads of medical grade drugs..the only time I ever indulge in such things :D

I don't think there is internet access in the wards, so this will be the last post for a while, unless I can hobble down to the reception area where there is a wifi hotspot and leach a bit of signal to feed my internet addiction.

Thanks to everyone for the kind words and support, I mean that, its easy to forget just how many people are in your life, even if its the outskirts, but when they all come forward to wish you well its truly overwhelming and I'm quite choked up by some of the nice things I hear and old friends who got in touch.....bet you wouldn't be so nice if I had the clap though eh??? eh???

Bed time now...hopefully I'll be able to update this soon...and add pics of the current cute beardless me, with some before and after pics :D


Sunday, 25 April 2010

I can't do that..I've got cancer.

Not for much longer..I've been lapping up the attention of those around me as I avoid doing the chores or indeed any work at all..its amazing, the sheer power of the C word. I don't care...I deserve to be a bit selfish in the run up to the big op.

We've had a nice week, trotting about the place, doing stuff and ermm things. Just for the hell of it. Especially eating..lots and lots of eating all my favorite foods. But today I have to have an easy eating day, and tomorrow an even lighter day so I have a nice empty stomach before my op.

The admissions guy at the hospital actually surprised me by insisting I have a very light breakfast at 7am...This isn't my 1st surgery of course, and normally they are mega anal about not eating for hours before. Mind you when he said light he meant light...a couple of toasted biscuits and coffee..Not sure its worth the effort but I'll take the advice, especially the coffee.

So...how am I? Bit tense, little scared of course, worse at night when I am trying to sleep, but sleeping fine when I do drop off.
The sheer thought of whats going to happen is at the front of my mind all the time..But am calm despite all this..The relief that I don't have to have the full resection will carry me through, it could be much worse.

But there is of course always a silver cloud to that lining...or something...We signed the papers for the mortgage on Friday, and posted them off. So assuming we've not ticked the wrong box or they decide they need even more paperwork (they actually wanted me to supply my divorce papers...lucky I got a copy of them from my ex before I moved over.) We should get confirmation of all the paperwork being processed when I get out of hossie.

That really is something to look forward to, all being well our move will happen in July and we can start putting down roots in our new country. A nice fresh start in so many ways.
I'll try to make some blog posts while I am in hospital so mum can keep up to date before she comes over to visit...dunno if they have wireless or not..Seems I can get internet if I opt for a "comfort" package....costs extra though and not sure the insurance will cover it..but I will ask :D


Tuesday, 20 April 2010

Today...is good news day :D

Well what a day....started out stressed of course, but we got to the hospital with shaky knees, expecting to hear some bad news, after getting the letter from the radiotherapy dept on Saturday.
I took Bina of course, but also Oscar, a colleague from work who is a native dutch speaker with us to avoid any possible misunderstandings and we shuffled into the Dr's office ready to have him pronounce sentence.

But he didn't in fact it was all good news...no spread to the lymph glands, and even better they were only going to do a partial thickness resection, in other words just remove the chunk that is around the tumor. There is also going to be a partial neck dissection as a precaution..this is actually a bit nastier than the jaw resection but better safe than sorry.

What this means is mega...

1st no need to reconstruct the jaw, at least not yet. I will lose some tissue and bone but they don't need to replace it. They will stretch my cheek skin over to make new gum and the lost teeth (3..maybe 4) will be replaced later in the year when the jaw heals with implants.

2nd I should not lose the feeling in my lips or tongue, at least not permanently which would have happened (to my lip) on a full resection.

3rd...most important for me of course...unless theres an emergency....no trach :D

Overall the surgery is much shorter, and recovery time a lot quicker. I'll have a big scar on my neck that will fade in time and the beard has to go for a while (awww) but thats something I can live with.
No trach, no feeding tube, no bone harvest no no no..lots of no's and all good.

And the letter for Radiotherapy.......a mistake..They sent me someone elses letter, I had a phone call from the dept apologizing for the error and accepting that those letters were only sent if something bad was discovered in the biopsies and scans...doh...that really did scare me so much, so what a relief.

And the good news keeps on coming....when we got back home I checked the mail, and we got our mortgage :D our move is on, and I'll be easily fit enough to cope with it all.

now...where do I go to buy a lottery ticket.

The smile of a very happy and relieved man just after our appointment at the hossie. I've been grinning like that all day...kinda crazy when you consider I still have to have a big op, but its all relative ;)

note...there does however seem to be a small fault in Bina's camera.....it has made some of my hairs appear grey...I don't have grey hairs of course, so it must be the camera.


Sunday, 18 April 2010

Emotional rollercoaster

very hard to explain....am normally quite an upbeat spontaneous person but with a detached analytical view of the world and people. Even this cancer thing I've just reviewed as a problem to be solved. But I'm losing some of that detachment at times.

Probably due to the craziness of the cancer situation, (of course it is!!). I'm not quite falling into a heap and blubbing yet, but there are moments of tears and quiet reflections, this is to be expected I suppose. The worst thing though is experiencing waves of shock and awe type fear that removes all the detachment.

News yesterday, in the form of an appointment letter, that I have to go for a radiotherapy consult in Utrecht had me spinning out of control for a bit as I worked out all the worst case situations that meant. They said I wouldn't need it, that surgery was all that was required...so of course I felt that wave of fear and figured something worse was coming.

But really its just a consult..nothing more or less, I'll find out exactly what treatment is being planned on Tuesday, so no point in worrying about it. Now that my detachment is back, I can see this now.

Who knows, it might even be good news, it might be bad news, it might even be no news at all...but next time they should talk to me before making appointments.

I have to stop seeing the worst case scenario....I can't project manage my way round this with good risk assessment and contingency plans, I just have to see what the experts have to say and move forward.
Easy to say now of course....we'll see how the next panic attack handles the next bit of news.


Saturday, 17 April 2010

Who spilled the curry?

spent 10 mins on my knees cleaning up the stain after someone spilled some curry on the carpet last night, would have been a bit easier if I had been told at the time;)

Not that I mind at all, we had a FANTASTIC evening last night, with most of our work colleagues and friends coming over to celebrate the great British Curry extravaganza Bina and I had prepared as a sort of final chew event.

The event was a great success with everyone really enjoying the food, a selection of chicken, lamb and vegan curries, dal's and stuff.

Including an absurdly hot Chicken Phal I prepared which was intended only for the Macho men and true masochists, since it had 20 dried red chilies 10 fresh red chillies, and a couple of scotch bonnet chillies in there...which normally would need you wearing a Hazmat suit to serve...but it all got eaten!!!!
...I am sure there are going to be some hot bottoms today though ;)

Some impromptu guitar playing also occurred followed by more food and chocolate fountain fun, before ending on several rounds of Tequila slammers with the surviviours.

A great night, with great people...Bina and I had a total ball, thanks to all who came (even the curry spiller).


Friday, 16 April 2010

feeling better and worse

Oh I have made a great discovery, while googling last night on jaw resection, I stumbled accross the site of Eric Warman
Eric, is a game developer, like me, who had jaw resection surgery on Dec 17th (my Birtday) for the same type of cancer, in pretty much the same place and he detailed everything including pics, on his blog...WARNING there are very graphic pics and videos in there of his operation and aftermath. (Don't look mum...really..)

I've read/watched quite a bit of it, though a lot of it is a bit hard for me to watch as its going to be so personal to me soon, it is fascinating. I also managed to contact Eric and add him to my faceboox account.

We spent an hour or so last night facebook chatting, with me asking all the kind of sily questions only someone who has been through it can answer..I've had a lot of worries taken off my shoulders I can tell you, I know most of the medical stuff but the little personal details are nice to know.

Though I have one concern added, or rather re-added, the dreaded trach popped up again, he had to have it and others he knows also...So I am back squirming at the thought of that. I'm going to have to be quite forceful that I really don't want a trach done....but I'm getting ahead of myself, I still have to discuss all this with my surgeon. So I'll try to stop squirming till then.

Eric's story is uncannally close to my own, so I'll take his recovery as a model of how mines will be....though I'm hoping I don't pick up an infection in the bone harvest site like he did which caused a few more issues for his recovery.


Thursday, 15 April 2010

I have THE best colleagues

I wish I could explain more, but it would be embarrassing for those involved...just wanted to say I have the most incredible wonderful, warm hearted supportive and friendly colleagues, bosses and students.

I can't say enough thank you's to all of them.


Wednesday, 14 April 2010


Say it ain't so....pleeeeeze

Someone just likes to watch me suffering!!!!

iPad's international release delayed by Apple

Vodafone, Orange and O2 are preparing price plans for the iPad 3G in the UK
Apple is to delay the international release of its touchscreen tablet computer, the iPad, by one month.

It will now launch the device around the world, including the UK, at the end of May, and will begin accepting pre-orders on 10 May.

In a statement the company blamed demand for the device in the US, which it said had been "surprisingly strong".

When the iPad launched in the US, 300,000 units were sold on its first day.

Apple claims it delivered 500,000 in the first week of its release.

"Demand is far higher than we predicted and will likely continue to exceed our supply over the next several weeks," said Apple.

Prices for the first iPad models start at $499 (£328) in the US. They have wi-fi but not 3G connectivity.


Mohs surgery??

yes I know I should keep away from the internet when I can't sleep. But I have been researching things again and have come across some info on a surgical technique known as Mohs surgery.

The type of cancer I have is squamous cell carcinoma located in the gingiva (thats a lump in the gums to you and me) This is basically a form of skin cancer, the gums after all are basically covered in a type of skin like everywhere else, only wetter. So they get the same kind of cancers as the other types of skin.

I've been reading that it can be used on squamous cell carcinoma though usually on lips, tongues and other fleshy bits, but can't seem to locate much info on its use on the gum.

The main advantage of this technique is that it basically slices down to the root of the tumor and only takes away as much as needed, each slice viewed under a microscope to verify the cancer is clear. This would mean no need to remove the jawbone though the teeth might still need to go to allow access to the entire gum tissue, and a nice access cut on the jawline..

If that could be done, it would be less trauma of course and a simple healing and repair process. So I am going to ask about this as soon as I can. It does seem to be mostly a US favored technique but there is a surgeon in Maastricht who does this so...we'll see.

clutching at straws a bit, but I want to be given some options, I don't really like this simple statement of we need to remove the jaw...if it is healthy and untouched I think it best to discuss ways to save it.


Monday, 12 April 2010

Coming to the end of round 1

Ok so that was the surgical/oncologist consult done...seems my lymph nodes are clear and clean, though we are still waiting on the needle biopsy results to be sure.

The plan at the moment is for surgery here in Breda, which is nice, they plan to do a lower jaw resection, which means I'll lose about 3 teeth worth, not quite sure if there's going to be any restructuring at this point and also removal of 1 lymph gland on that side for safety..I'll need to ask questions about that on the 20th to see what functions that'll impair.
But I do know I will lose lip control and most of the feeling on the right side of my face, so going to have to get some kissing practice I before I lose the knack.

I'm still not sure why a full resection is needed when it seems so local, but its best I question that with my surgeon.

Oh an a trach is very unlikely..phew...that would freak me out big time....stupid innit? I'm going to lose feeling in my face, have a droopy lip and not be able to chew or talk properly for months but I'm really relieved that they are not going to put a hole in my throat (uuuggg just typing that makes me squirm)..yup..I got some odd priorities :D


Definitely need to work on that education

Then again if you watch Fox news...why bother..just do what they tell you

no...really its true

Sunday, 11 April 2010

oh the horror

The internet is a horrible thing..it just gives you too much information. I've been looking up details on jaw resections, so I can be prepared for Mondays surgical consult.

Christ its a big deal..I hope to fuck I only need a partial resection because the full Monty is not a pleasant process at all. Not least because it probably involves the one thing I truly have an absolute horror of, a Tracheostomy.

Ever since I was a kid, I've hated having my throat touched or constricted, I can't bear to see injuries to throats and am really freaked out by people who have trach holes. I don't wear chains or anything that touches my throat because I hate the feeling. Having the scans and biopsies last week put me at the absolute limit of my tolerance.

A tracheostomy is my absolute total idea of the worst thing in the world. I really don't think thats something I could take, it would totally freak me out. And I don't care how many people have one without issue and come through it.. I simply can't deal with that....fuck that.

So...I have to hope the surgeon is confident of a fairly simple shaving bone process (a partial resection) rather than losing a big chunk which needs the trach to counter the resulting swelling

A little information is indeed a dangerous thing, but I'd rather know the facts, even if they creep me out, so I can ask the right questions.


Friday, 9 April 2010

oh...and smiles too

Oh I forgot to mention something fun that happened yesterday. We had previously booked our medicals for the life insurance, and it was too late to cancel so we went ahead with it. It was done at home, by a really nice Dutch Doctor, sorry I didn't quite catch his name, as I an such a wuss at asking Dutch people to repeat their names when I don't make them out, who came and did all the BP, heart, lung tests etc, and filled out a questionnaire..All pretty standard, I explained the cancer diagnosis, and he just proceeded with the exam as normal.

What was amusing though was that as soon as he came in he caught sight of my Stratocaster sat in its stand in the living room and was quite captivated.
It turned out he was also a guitar player and was really impressed to see a real Fender sat there, his guitars were not very special it seems.

Once our exams were done, Bina had to have a 2nd BP test, because her pressures are normally high (she's on meds for it) and she had to lie down for a minute to let her pressure settle.

So with a fellow guitar buff in place, he raised the subject of guitars again and I realized I had something he'd like to see. I brought out the big gun and let him see and play my Lucille...He was agog, never having had such a lovely guitar in his hands before he strummed away with a biggest smile on his face, while Bina patiently lay on the couch waiting for her 2nd BP test. I showed him the others after he'd done Bina's test, the smile never came off his face once.

It really was nice to see how something so simple as holding one of my guitars, could make someone so happy, there was a chap, just doing a boring routine medical checkup, had his evening turned into something that made his day.

It also brought home to me something that was brought up at our "lads" night out, in the midst of people assessing what to do next with their lives now they needed new jobs, everyone was banging on about their life goals; There was talk of high academic achievements, fame,important breakthroughs in their fields, fortune and so on...and it dawned on me, the only real goals I have to is to see my kids happy, not to piss people off, and to make Bina smile. Everything else in my life is just fine, in spite of the kick in the nuts over the cancer thing, my life is amazing..why reach for more? (though a cure for cancer would be a good idea..I'll get right on that when I have time)

Sometimes the really important things are just the tiny things that are closer to home than you realize, the getting through life parts that people confuse as being important goals, are just the means to let you achieve these simple goals, they are just the bumps in the road you need to deal with.


Ok, but it'll cost you; 1st tears.

We got a bit of good news today, Even though I wont be able to get any life insurance while I have the cancer, we can still move ahead with our plans to buy the house, taking a slightly different mortgage plan, which of course...will cost extra!

Finance is never anything but opportunistic, where theres a reason to charge..they charge. Not sure exactly how much more, around 150euros I think. I guess we can offset that by the fact we won't be paying Life insurance premiums.

But in the grand scheme of things its only money, and if it allows us to get the house we want, then we'll push ahead.

Pretty much done telling all the family and friends now, those that I can't get hold of will no doubt hear in due course. some wonderful words of support that are really nice to hear, thanks to everyone...Work colleagues have been simply amazing with offers of help and cover till I get back, they really are an amazing bunch.

Hardest person to tell was my daughter Danni, who didn't take the news well and was the only one who had me blubbing on the phone, but after the initial shock of hearing the C word, she started to take onboard the facts that it is early and treatable so we had a bit of blub and left it at that. Nothing I hate more than hearing my sprog cry, even if she is all grown up.

So in true fuckit style I went out on the razzle last night with a few colleagues, a couple of whom sadly won't be coming back to NHTV next year....I figured having cancer kinda topped being let go. so they couldn't really complain too much about their need to polish the CV.

We let our hair down and had a superb meal and wine at the Goucho steak house and booze at the pub to follow. My colleague Dino surprisingly insisted on paying the restaurant bill which was sweet of him and a little embarrassing, since I had every intention of paying for it myself to cheer everyone up, and had ordered "the good stuff", with all the trimmings (solid food has become somewhat extra important to me at the moment) so it was not a cheap night for the big man..I tried to make up for this by keeping the booze flowing at the pub and subsequent hour or so of pool at the American pool bar that followed (even pissed as a fart I was unbeatable ;) )

A good night, hopefully topped off by my friend Steves (one of the leavers) drunken but sincere proposal to his Dutch girlfriend, which I hope they remembered and will carry through and stay in Breda....I offered my services as a bridesmaid....but I hope they forget that bit.

Anyway...sleep is slow to come despite being tired...as much as I am coping well wth the situation, it does weigh on my mind especially when I am trying to sleep...but time I went to bed and tried again.


Tuesday, 6 April 2010

ah fuckit

So..I got my biopsy results in.


shit.....that puts a bit of a damper on what had been a very nice day today.

I've told immediate family and friends, work colleagues will follow. So as is my habit, I'll start to record things here.

I wanted to be sure that my job was safe while I get treatment and have been told that it is, so we can make plans that suit, I would have hated to run back to the UK with no job, home or whatever.

Not sure the house purchase can still go ahead though, since life insurance is going to be a bit tough to get right now. But we'll check it out.
Another classic fucking example of good timing, we have our medicals for the insurance booked on Thursday, I suspect I'll have to disclose that, chances are my blood work will show up cancer pointers anyway, but we've asked the bank if they would still allow us to have a mortgage when one parter has such an illness.

So whats the score? Basically, I have a form of oral cancer, he did say the name but I couldn't pronounce it never mind spell. I'll note the name of it later when I have more details to hand.

Its fairly rare, but he's confident it's only at stage T1, ie a small tumor away from the bone and endocrine system. It will need treatment and the 1st step now is to work out exactly what stage my cancer is at and plan a treatment program.

I'll say this for Dutch health people though, they moved fast..on the same day they told me, I've had an MRI (btw that takes 30mins....), Xrays, ultra sound and 2 needle biopsies into the lymph glands in my neck to make sure that they are safe, if so, then we are indeed at T1 and treatment should be only surgery with not too much follow up. I don't really fancy the chemo and radio therapy that will be needed if its at a later stage but no point speculating till the results are in.

We knew this was bad news on Friday when the hospital called and brought forward my appointment, then said not to go alone...yikes...I spend the entire weekend shitting myself over what it might be, though I knew really. I shared my fears with Bina and she was also stressed. It was actually quite a relief when he told me, not good news of course but no more speculation. We now move forward.

Surgery is going to be a bitch, there will be removal of part of my jaw with subsequent problems with speaking and eating.....hmm silence and a liquid diet..I guess I can live with that for a while. Good job I've been fattening up for winter.

I have a surgical consult with a specialist in Utrecht on Monday, and a treatment meeting with my doctor on the 20th to determine the treatment plan depending on the test results.


Monday, 5 April 2010

Happy Easter?

Here in Holland, at least in the south, Easter is a big deal, with Friday and Monday being public holidays in most places making it a classic long weekend.

So great, a nice long weekend for everyone, even if you don't actually believe the whole zombie son of god thing..

Though of course I might enjoy it more if I didn't normally have Friday and Monday at home anyway....at least officially I don't have to do any work.

Weather has been pretty crappy though, after the surprisingly early warm spell the other week, it seems we have got the tail end of the storms that have been hitting the UK. Not a lot of snow, (in fact I only noticed some hailstones but Bina assures me there was snow,) but it chilly and wet for sure. Today, (Monday) looks brighter though so we might venture out and see what if anything is open today.


Saturday, 3 April 2010


very disappointing poker game with colleagues...one, who shall remain nameless, felt it was all being taken a bit too serious.
and totally ruined the final phase of the game by bitching about it, so much so we just ended it there and then.....why come to a fucking poker night if you don't want to play poker. The argument that other games he used to talk more is just bs...much booze was drunk, much talk was made but also much poker was played...

Its not a case of taking it too serious its simply a case of enjoying a common theme and seeing it through...way to lose the fucking plot dude!! I hope to fuck he's not going to come to the tiddlywinks evening i was thinking about planning.

ahh balls to it, am pissed and a bit narked for reasons that may become apparent next week.

right now time to get to bed and sleep it off.


Thursday, 1 April 2010

Tubes for the Twanging thing

My new toy...

Its a 5W Fender Champ 600 all tube amp... As much as I would love to have a full size 50W+ all tube amp (my Marshall is only part tube) I can't afford one just now (nor indeed do I have anywhere to put it), so picked this up on ebay at a great price.
Makes a really lovely warm sound, much nicer than the Marshall, and small enough to carry around. The Strat sounds amazing on it, Lucille sounds just fab...a great buy for a home player.