RT8

Same old same old.
Absolutely nothing different to report...in, zap, out.

Though the tech de jour was a surprise, turned out she was English, and after speaking to me for a minute or so in Dutch which I understood, I got caught up in a few words I didn't understand and had to ask her to speak English...She was surpised (Dutch name yada yada) but straight away I heard her London accent even though she kept slipping back into Dutch as she was talking to me, and laughing to her collegue how she was so out of practice with her English(in Dutch). She'd been here quite a while so English was clearly not something she spoke much these days. Interesting to hear why people come here..She came for a year, like me, then met someone and stayed..she's never regretted it 25 years later.

Anway, I was hoping to take a camera to the clinic but we can't find our little digital camera, and my phone is useless so no pics yet. I'll hopefully manage to get a pic of me strapped down sometime soon. (reading that back perhaps thats not such a good way to describe it)

Dry mouth is not quite as bad today but still evident, sore throat still very very minor, just a hint of what might be to come. Some pain around my scar though in one area, very tender indeed, as always not sure if thats a healing thing or the RT but will mention it in my controle if it's still a problem.

RT7 and here we go!

RT 7, again nothing much to report, though the machine did stop half way through....never considered that such cutting edge tech would be quite so tempremental. But they got it fired up again and zapped away.

1st side effects are confirmed though, I have a very distinct dryness on the right side, and the skin in the tumour site is starting to turn a little velvety as it begins to die off.

I also have a very very slight hint of a sore throat but so far not causing any issues.

Fatigue may also be hitting home. This morning aside from my face feeling quite stiff and sore, I really had a hard time getting up (not really an uncommon occurance but I'll mention it), cycling to the office for a quick meeting also felt more like climbing the north face of the Eiger, as was evident from my heavy panting when I got there.

I guess at this point things start to become interesting? I decided to have what may be my last proper wet razor shave to tidy things up...not sure how or if my skin will be affected but better start taking their advice to stop using any products on my skin.

From next week I have arranged with the insurance company who supply our medical cover to get taxies to the centre since it may start to be more of a chore if this fatigue keeps increasing.

My control meeting with Drs Oie was short, he did have a quick check inside to make sure I have no signs of candida or other type of infection which I have to be careful off now..Going to be extra vigilant with my salt water mouthwashes to prevent that.

And thats it...more updates tomorrow.

RT6 and a new machine!!

This week I am in the Robjin room for my treatments...same thing really just moved to the other machine, they have 2 that are exactly the same.

Nothing to report...still no superpowers..no side effects noticable..the metallic taste has worn off..so think it was more toungue bruising that RT related.

I have a controle meeting tomorrow, so guess I may have more info then.


struggling for things to say........

RT5 and Controle

(control spelled the dutch way)

So last one of the week and nothing to report...no breakdowns this time...less yapping and more zapping.

The control interview was equally uneventful, but thats all to be expected, the 1st week is not likely to produce any major side effects (or super powers) so now I get the weekend to chill. Drs Oie did show me some CT scans and outlines of the areas they are irradiating..Only one of my saliva glands is going to be in direct line so that will make some of the symptoms associated with dormant saliva glands much less severe....but of course it won't prevent them totally...so I still some issues to look forward to.

So lets have a recap of my status so far.

Physically I still have swelling in the area of the surgery, inside my mouth is pretty much all healed and happy but I can't really chew on the quite tender "new" gum area that has formed over the removed jaw section.

I have reasonable but still quite limited gape, I can fit 2 fingers in comfortably now but my doughnut in 1, days are over...I have been doing my stretching exercises quite regularly, pushing my mouth apart with my finger and thumb, but its only gained me a few mm. but not to worry I am sure it will improve.
My tongue is about 95% working, there is a slight paralysis on the right side and a very slight numbness but generally its working..I just have to accept sticking my tongue out at someone is something I need to grow out of...it might come back to normal eventually.

Outside my mouth is sightly more complex...the most noticeable thing for others is the fact my bottom lip is still paralysed on the right side...it affects my speech a little but it seems people can understand me more than I think...I do have an unfortunate tendency to spit a little when saying certain words so I'm trying to be careful not to spray anyone when I use a lot of P words.

Pain levels are right down now, I still get severe twinges around the surgical site and scar but no where near as often. 1 or 2 an hour instead of 20 or more, I've stopped taking painkillers and with RT in progress cut back on my alcohol intake which was quite helpful as a mild painkiller.

No feeling in my right earlobe which is an odd sensation and parts of my cheek and under he jaw are still numb...this makes shaving very odd, but since I've been advised to not shave so much while having RT thats something I can live with.

Overall the bone swelling on the jaw is going down but I am still clearly a little lop sided, also my neck/shoulder muscles have wasted a little on the right side, but I do think that the weakness there is much better and I am going to be less worried about favouring my right shoulder to let that build up again.

The neck scar itches, a lot..but the tissue between the scar and jawline does seem to finally be softening and I'm slightly more aware of feeling there.

I do tire a little too easily but my overall fitness has been steadily improving since I become more active following the op, this is expected to dip again during RT but at the moment I feel pretty good so long as you don't ask me to walk miles on end or cycle at speed.

And finally on the physical side, I am eating fine...small issues of things that are a little too big to fit notwithstanding, I'm not having any problems. I have avoided hard crusty foods for obvious reasons but anything else is falling victim to my perfectly normal appetite.

Emotionally, I'm trying very hard to stay upbeat and positive..but I have to admit I'm emotionally very compromised, anything which upsets or angers me is at a tipping point where the slightest thing will generate strong emotional feelings I can't control.
So I cry for seemingly no reasons and I am very impatient easily losing my temper....not my usual self at all. This is partly post surgical, partly stress...but I am doing my best to deal with things and for the most part, people around me are incredibly supportive and patient. The temper is easier to control with a deep pause for breath than the spontaneous crying though.

And thats it so far really....it'll be interesting to compare how I am feeling next week when they expect the side effects to start kicking in.

Eat more meat..and RT4

Saw the Dietician today, no big surprises, she wants me to increase my protien intake, with more meat/fish and dairy. I thought was doing pretty good food wise, but I can certainly increase it. Weight is 90kg with clothes on and she did a grip power meter test to act as a base line for muscle wastage, all easy enough so far.

Then after a bit of a wait, off for RT4, starting with an imaging scan to make sure nothing has moved..it hadn't then on to the grilling...but the machine broke down..so instead of 3 or 4 minutes pinned I was there for about 15...not too bad really, someone came and talked to me while they got it working again, she was telling me all about the type of machine it was, and how it worked..

Anyway, they got it fixed, and zap. Done..But I did have one helluva stiff neck when I got up after being pinned for so long.

Still no major side effects aside from the taste and tingling tip of my tongue which may indeed be due to the RT but could also still be post surgery nerve damage...we'll see. When the side effects really kick in they will be very obvious.

And my cry like a girly for no reason super power is still evident.

aargghh another pointless appointment

Once again, I have to go into Breda Amphia M for a dental hygienist appointment....I was expecting my "regular" lady, Lysette, who specifically told me I'd see her every week to clean and check up things...instead...what do I get?

3 totally different ladies, none of whom spoke very good english and we ended up communicating in broken dutch/english, and the only purpose of the appointment....to give me a prescription for the fluoride gel. No check up, no clean, nothing.

WHY THE FUCK could that not have been done on Tuesday when I picked up the bloody moulds, and WHY THE FUCK am I being given conflicting information..now its every other week, and only if I have issues. and use the baths ever other day not every day as the dentist said.....baahhhh...I told them not to waste my time again with pointless appointments, unless they have some purpose for it I won't be coming in. Its bad enough re-arranging my day around the trips to Tilburg but having to fit extra appointments in at Breda which frankly are just not needed is not on...

I am most displeased...the negative waves of the last few days are clearly starting to have an impact.

Grumpy mode is ON

RT3

EArly appointment today, but I got the train ok, and managed to get to Tilburg, caught the 7.59 number 6 bus and sat back knowing I had 25 mins to get to the clinic


Sadly however I was on the wrong number 6, and ended up way the other side of town...ah well, it turned round eventually, and I phoned the clinic to apologise and let them know I was going to be late.

They managed to sort me out as soon as I arrived, and RT3 went ahead with no noticible effects..though I still have a slight metallic taste in my mouth and my neck scar is still twitching.


Dental Hygenist tomorrow......fun.

1st effects???

Really not sure if this is my brain playing tricks or not but I feel I am having a distinct change in my sense of taste...surely thats too early? Only 2 treatments in?

I really dunno if its the RT or some residual bruising issues with my tongue which still seems to be a bit hit and miss when it comes to feeling, but my sense of taste has become a little metallic.

Nahh...can't be the RT already? but I'll ask tomorrow, I have a very early appointment.

Also oddly..my scar is really becoming very active and irritated. The whole area is throbbing a little more than usual, but I suspect this is more a healing issue than RT..the area under my chin from jawbone to the scar has been quite hard and inflexible since the op, but I noticed it has been softening up these last couple of weeks and I think that things are just starting to loosen up around the scar perhaps with some residual irritation.

pointless appointment

Posted this in my main blog by mistake, but I'll leave it there and re-post here

Just back from my 1.25 appointment with the dentist, an appointment I had to rearrange my entire day around..an appointment which was supposed to be so important they re-arranged their day around it when it was booked, an appointment where I had to cycle accross town to get there on time

And what happened during this appointment?

They just gave me my dental moulds and told me to give them to the Dental Hygenist when I saw her next....on Thursday.

WTF!!! That was a total waste of my time and interfered a lot with my day.
I hope they don't try that when I'm in a grumpy mood or they may experience a bit more of my dulcet scottish tones than they are used to hearing.

RT2

This could end up being a very boring series of entries..

Had 2nd one....same as 1st one but less explinations.

Oh and a buffalo was running loose in the hospital reception....well maybe not a buffalo more like a women in a wheelchair being pushed around by her elderly husband who clearly could not see and banged into a lot of things.


Still no super powers to report..

RT 1

So my 1st radiotherapy....a total non event really. Got there a little early due to trains being late, so I took a taxi from the station. But no problem, they shuffled me through reception to the RT check-in desk where I was given my appointments for the week.

All a bit helter skelter, some in the morning, some afternoon...and it seems these can't be changed so I have to arrange for things around these times.

But no matter, I was called in just before 8-40, my appointment time, the usual banter about not speaking Dutch with a Dutch name (starting wear a bit now tbh..I really must learn to return the conversation in better Dutch...mein opa was Nederlands...I think??

Was shown to a changing room, where I had 2 personal white dressing gowns waiting for me with my misspelled name (Brain, rather than Brian) on the hanger labels.
Asked to take off my top and wear a gown....which was actually a bit pointless, as you exit the changing room into a control area, behind which is the RT machine where you are asked to remove the same gown, less than 20secs wear in total.

A few details of the process are repeated again and then you're strapped into your mask onto the table, a few checks made to make sure you are still in the right place and off they retreat to the control room.

Machine spins around you a bit, makes a few buzzing noises and 5 mins or so later...all done.

Rinse and repeat for 6 weeks.

No sign of radiation based super powers...tried to fly when I got out into the open air but no joy.

Though I am totally sure it was 100% in my head my scar twinged quite a bit when I got outside and I was convinced the staples still in my face were hot....naaa was all in my mind.

chomp on that

Nothing much to report today, went to dentist to have my impressions taken for the floride baths. Pretty much in and out, not the chattiest dentist I've ever had.

Not totally uneventful as the bottom mould kinda stuck round the rear of my gum which was painful as he tried to remove it. He said there's no infection I just need to keep doing my mouth widening excersise to streach the muscles.

Wonder what that quick setting red goo is they use.

One thing did shock me..the dentist reminded me, again, of the damage radiation can do to teeth, and that I must clean much more often than normal, oh and use the floride baths for the REST OF MY LIFE!!

WTF..where did that come from?


No long term side effects my arse!!!


Back on Tuesday for a fitting (I think) and Thursday for the Hygenist to do her thing again.

Nice grey teeth

Well as I said I've never had bright white teeth, more a grey colour (which apparently makes them stronger) and after a visit to the hospital torture cham.....I mean dental hygenist. My Teeth are back to normal. No more ugly brown stains from the mouthwash, but since I have to keep using it (30 mins after brushing) the stains will return.

Fairly uneventful appointment, a full scale and polish of course, but info on the extreme importance of keeping my mouth as clean as possible, using salt water mouth washes regularly during the day and the importance of proper cleaning and brushing, up to 4 or 5 times a day with dental sticks and so on..Ok I get that.

Next a trip to the Dentist on Thursday to make moulds for my flouride baths, then back to the hygenist to demonstrate their use.

Weekly visits for scrapes and polish as well as checking all is well will be the order of the day.

After having my letter translated, Monday is indeed my 1st appointment for radiation therapy, but annoyingly they won't commit to a regular timeslot...hmmm not pleased..might complain and see how I get on.

Not 100% sure my cheek infection is quite gone, the AB's have run their course, but top of my cheek is still swollen and sore, though no where near as bad as it was...will discuss with Dentist on Thursday.

Not healing fast enough

It may seem a minor thing but 2 months later I am still having post surgical pain, sore swelling and generally feeling tender.

And I'm sick of it...seriously I want to have my face back to its normal size and shape and not constantly feeling wrong throbbing and pulling in odd directions when I sit still.

I realise I will have some limitations...my mouth opening for example is not progressing past 2 fingers despite the recent infection being cleared up (though may be back as its tender again). but I want to shave without cringing into a standing foetal position as the blades drag over the numb then sore parts of my right cheek.

Healing takes 3-6 months apparently...and I assume the RT is going to interfere with that for a while.

sigh....fact is, pain even if its not that severe has a way of getting you down when its constant..I've been "self medicating" a lot recently, with booze, which is very effective but I can't really do that forever, a few weeks of feeling sore and sorry for myself are one thing, but I need to avoid dependancy on any kind of drug to deal with it...so I'll cut down. I can't drink much if any when the RT starts anyway, so going to have to find other ways to deal with this.

Its important to me personally that I don't let this drag me into a depression, I know how dangerous that can be. Going to make more effort to fill my time with positive things and maybe less evenings in front of the computer
(but no scrabble :D I lost my temper last time )

Statistics shmistiks

So, we met with Drs van Gemert today for a quick check up, all good, the AB's are working well and my jaw is feeling much better and looser. I am able to open it much more and have near normal function (as I was able to demonstrate tackling a massive rare rib eye steak last night....slowly ). The biopsy on my clavicle node was clear, it was probably just swollen in reaction to the infection in my mouth.

I was introduced to the dental hygienist who is going to torture me every week and then I was given a run down on the statistical facts that are available.

I had a T2,N1 cancer, which means its was what's called a Stage III cancer. This is mainly due to the metastasis in the lymph node increasing the risks.

At my previous request Drs van Gemert then went through an explanation of how the cancer stage is calculated and what the survival rates are for different states. Statistically, and its important to remember that this is based on a wide range of oral cancer stage III victims, my chances are 50-60% to get to 5 years.


Pause for effect.


Not good really, and there's no hiding the fact this is a shitty kind of cancer that really does kill a lot of people.

But then again so what? It really is based on a wide range..There are several positives in my favour, the tumour was fractionally over the size that would class it as a T1, the metastasis was in only 1 lymph node and it was encapsulated and removed possible ending everything, it was on my gum, which is fairly rare and one of the least aggressive places to have it, and also there was no "spidery spread' into the tissues, the tumour was relatively smooth and contained, and there's no need for chemo at this stage.

I have said before that living in fear is not living, and I don't intend to live in fear of this cancer, its going to be dealt with then we get on with our lives. If it comes back, we deal with it again, and if it can't be dealt with...we'll see.

As a newly greying member of the middle age brigade, I think I have far more to worry about from heart attacks, blood clots, strokes, or genuine accidents than cancer. Which, though I can't back it up with figures probably kills more fat greying scottish blokes than this cancer ever has.

I need to be more aware of my body though, watch out for lumps and bumps and sore spots and get on the phone if I find any, I get regular checkups every 6 weeks for the 1st year and then it'll tail off. If its going to come back, it will mostly likely come back in the 1st year....so those checkups will be very important.

The positives today are that the biopsy was clear, and the AB's are working on my mouth....next appointment is in Tuesday with the dreaded dental hygienist.....

Masking it up

Back to Tilburg to get fitted with my "mask"

Interesting process, basically its more of a clamp that they use to make sure you are in the exact same position on the table each time.

Making it was amusing, 2 young nurses in white starched uniforms, start by asking you to take your top off (oh yes...) lay down on the table (hmmmmm), fiddle about with your head to get you in the right spot..(liking this a lot)
And then the blank mask, which is like a sheet of plastic with metal clips at various edges, which has been sat in hot water for a while is placed over your head and houlders and clamped into place.
After which, the 2 aformentioned nurses gently spread the plastic around your head and shoulders, a bit like a gentle head massage, I found it very soothing as 5 minutes was counted down till the mask was cool and hard. If one of them had asked me if I could feel it getting hard I would have had a serious fit of giggles.

After which a CT scan, with the now finished mask, where I had an IV fitted so they could feed me some kind of chemical marker for the CT machine..5 mins of whirring away and done..though the marker did leave me with a nasty metallic taste.

I can see why people find the mask claustrophobic, you are pinned down and its rather odd being able to feel your blood pulsing through both jugulars tapping on the mask..I dare say I will come to hate that mask but I do realise the need to be precise.

I've got an appointment to go back for the 1st treatment on the 21st,
but I need to get that changed as its Bina's Birthday and I want to try not to disrupt the day.

edit...managed to change the time to early morning, so I can be in and out and Bina and I can spend a nice day together.

And a bit less waiting.

Yesterday Dr Oie at Tilburg called Drs van Gemert in Breda about my cheek infection, and I was asked to pop into today to see Drs van Gemert.

So I did, went to the desk, explained I'd been asked to come in and after a bit of checking was asked to take a seat in the waiting room.

I turned to walk to the waiting room, to see ooohhhh approximately 30 people sat, waiting in that, god I'm bored, kind of waiting way.
uh oh...this could take a while thinks I, having been used to the waiting room system from the UK, but I had nothing much to do today so took my seat and waited.

2 mins later, Drs van Gemert's assistant calls my name and I'm in straight away.

I cannot tell you the looks I got....priceless.

Anyway..looks like its an infection at the top of the cheek tissue so he's given me some AB's to take for 8 days and also arranged my Dental Hygienist appointment for next week. I even got to meet the dentist, who wants me to work on opening my mouth a lot more so he can take moulds for the fluoride baths they want me to do to strengthen the teath. Drs van Gemert wanted to do it today but my mouth is too sore.

I should point out I like Drs van Gemert very much, he's a, lets do it now, I'll call him, kinda guy; none of this filling out forms. He "knows" this guy and sorts it there and then and I get sent off to the dept to find the chap ready and waiting. Oh and more waiting room stares as I walk straight in. Thats exactly the kind of guy I want cutting bits out of me.

I pointed out a slight worry I have with a swollen lymph node on my clavicle, which has grown markedly since the op, and in typical van Gemert fashion after a quick phone call, I was sent for an immediate ultrasound and biopsy to make sure all is well...lovely more needles!

I have a normal check-up appointment with Drs van Gemert on Friday, where he wants to explain more details on my cancer and treatment, and hopefully the results of today’s biopsy will be ready!


Pity I could not get the teeth moulds done but I have an appointment, or Drs van Gemert will just send me on Friday.

Oh and the cause of the teeth discolouration is due to the mouthwash, the regular clean and polishes I will be getting once treatment starts will get them all nice and white again…at least till they fall out!!

So begins the....waiting!!

So today was my consult with the new Radiotherapist/Oncologist at the Dr Verbeeten Institute in Tilburg . I suppose by British terminology you would call it a private clinic, seems to specialise in cancer and cancer treatment nice and posh.

I had no idea how long it would take to get there, so I decided to get a taxi from the station and off we went, 12 mins later I arrived 35 minutes early..oh well..I'll know next time.

Nothing much to report aside from a ridiculous Charlie Chaplin moment on my part.

On checking in they give you a token for the coffee machine, ok it was early so off I went to get my coffee. Token in...press for coffee/melk/suiker and voila...

Brown and white steams start gushing out of the spouts. Arrghh...no plastic cups, I rushed to grab a cup from the sideboard next to the machine, but too late, the precious fluid had stopped flowing..

I walked back to the fancy glass reception desk to ask for a new token, gesticulating fairly mildly I thought, pointing back to the machine. Not realising that the cup I still held in my hand was in fact a used cup, still containing a small amount of coffee from its previous use...

This small amount, now became propelled through the air, watched by me with sinking heart as it headed straight for the young blonde receptionist behind her desk and her extremely white blouse........fortunately for her at least, the momentum of the coffee was more of a slow arc than a straight bullet projection and it didn't clear the desk, but it did splash all the way down before leaving a nice splash on the carpet.

I apologised profusely as she handed me a new token and explained my actions, which she had missed as she was picking up a new token.

New token in place I took more careful note of the instructions in Dutch which I now realised said first put your cup under the spout...and I found clean cups.

So I sat and waited and watched mildly amused as 1st the receptionist, then a cleaner, then the cleaners supervisor, then the supervisors supervisor, all tried to remove the stain of coffee that could be seen had slipped in between the glass plates and the mounting bolts.....I must admit, even though I was the cause (and it was a total accident) I took some pride in knowing I was keeping these 3 fine people in work.


Anyway...it was pretty much the same deal as Utrecht, consultant went through the notes, discussed the process, he's going to do 35 fractions, 23 on my neck and 12 on my tumour site, or something. He needs to work it out before the 1st treatment. Interestingly, he does not believe there will be any long term side effects for this. We'll see I suppose. I mentioned my probably infection/pain in my mouth which he's a bit worried about and was going to give me some AB's but decided instead to contact Drs van Gemart who wants me to go into Breda hospital tomorrow to check it over.

Also he will arrange for a dental hygienist to get my teeth all nice and clean again...Actually there's a serious point to that, if they are not in good nick, the radiation can have nasty effects on teeth, so a full clean and polish. hopefully after they sort out the current opening problems.


Next is an appointment to have my mask fitted and a precision CT scan to work out the correct placement. Took them qute some time to sort those appointments though, ah well, wouldn't be a clinic if there wasn't a wait.

Took a bus back, only took 8 minutes including stops...think the taxi took the long way round.

wait a minute...they're not that colour

I have no idea why, but it looks like my teeth are taking a bit of a beating!

Despite regular brushing and mouthwashing with the prescribed mouth wash, there is an immense build up of tarter and plaque on my front teeth and probably the others too...I've never had perfect white teeth but I sure as hell never had brown stained kacky teeth.

Since I can't smile properly at the moment to the extent of exposing my bottom teeth, this went un-noticed but I spotted this the other day while trying to open my mouth wider and see inside (wanted to see what the pain was being caused by..but its just a big pink cave I can't see into)

As a non smoker I kinda object to having brown stained teeth....fortunaly I have a dental checkup coming before starting RT so this will be discussed.

Still oww

Have run the course of AB's and still sore, so will have to bring this up with the Radiologist on Monday and see if it needs closer inspection.

Thinking about it its probably just tearing of the muscles which were repositioned during surgery by the stretching exercise I have to do to get my mouth to open wider...its having the opposite effect at the moment though my mouth is getting harder and harder to open and its become quite painful to eat again.


yeah need to bring it to the doctors notice!!

Tilburg it is.

Monday 11am, for an intake appointment...basically the same deal as Utrecht, though this time I'll let the Doctor conduct his interview in relative peace and get things started.

Quite pleased about this, much much less travelling, its only about 15 mins from here, and I can probably just book a regular taxi and get the insurance to pay for it, I'll check that out.

Owww

No appointment yet but an unpleasant development. I seem to have a specific sore spot on the reconstructed tissue directly behind my upper wisdom tooth. Extremely painful and causing me huge issues when I try to open wide or sneeze....Suspect a slight infection of some kind so am going to use my AB prescription I was given as a backup from the hossie...not sure its still valid but it'll save me a trip to the docs.

This is really affecting my ability to open my mouth, which of course is already restricted, I have to do "exercises" to improve my gape, which hurt and seem to be very slow progress.

Still looking forward to that point where I can get a banana in my mouth without scraping it across my teeth.

Hello

I've discussed aspects of my cancer fun in my main blog, but it didn't seem to me to be 100% appropriate to discuss bad shit like cancer in what is essentially a fun blog.

So here we go an all new blog to track the journey I thought was over but is in fact just beginning..prepare to be depressed.

In case you can't be bothered to look at the main blog (I don't blame you, the spelling alone is enough to give most people a fit) here's a brief recap.

April 6th I was diagnosed with Oral cancer, after a visit to the dentist to investigate what I thought was an ulcer that had become infected..a subsequent biopsy by the jaw surgeon revealed it was in fact malignant..

April 27th I had a partial jaw resection to remove it, quite a nasty 5 hour op, but I was actually quite pleased since it wasn't the horrific 15hour full resection I had initially expected...6 days in hospital, the 1st 2 of which were pain killer free watching the worlds slowest clock tick tock tick tock......it stopped twice as well....thought I'd died the 1st time....

May 18th I had a visit to the outpatients clinic to be told...nothing, the pathology results had not come though

May 20th though I got a call the doctor saying all was fine, that there was a minor issue with the margin of error not being quite big enough but they would watch that and snip it out if it came back, 23 lymph nodes were removed and all clear...I was effectively cancer free

Yipee!!!

May 26th .....Doctor called again, my path results were double checked by the specialist team in Utrecht...the minor margin of error issue was actually 2 minor margins of error and that was unacceptable...but much worse..the cancer had in fact been detected in one lymph node.

In other words...they missed a bit.

FUCK!

yes I said fuck, its one of those words that people tend to overuse, me especially as a Scot its almost used as punctuation, but in this exact situation it is in fact the most apt word possible. I could perhaps also say Fuckity fuck...but I need to maintain the seriousness of the situation.


So...Surgery failed, it only managed to remove the main tumour, there are however cancer cells floating around in my lymph system waiting to find a new home to cause future issues...oh and the margin of error needs sorting out.

Or are there? This is the crux of everything now...frankly there's no way to tell, the metastasis was very small (small enough to be missed) but the problem is the lymph system, especially in the head and neck is vast, and they just took a random sample of nodes in the area of the tumour. Its just not possible to say if just that 1 tiny node was infected, which means I'm clear 'cos it was removed, or if there are others that were not removed with equally tiny traces, but which will grow. Stats would suggest however, if you have it in 1, its going to be somewhere else, so my cancer clear status is gone...I have to deal with this now.

Today we made a gawdawful trip to Utrecht Medical University to see the radiologist, to discuss the plan of attack, 2 trains and a bus, best part of 2 hours...

At this point the plan is to nuke the remains of the tumour site from orbit, its the only way to be sure, and also to gently fry the rest of my neck for 6 weeks to kill off any cancer hiding away in my remaining lymph glands.

Bina (my other half) and I spent 40-50 mins with the radiologist and his assistant quizzing him on exactly what they were planning, why they were planning it and what the after effects are..oh and why the hell do we have to have it done in Utrecht. I think the poor fella was a bit unprepared for the waves of questions that came his way.

When done though it was clear to me that I have to have this..I "could", not do it, and toss the dice to see if the cancer comes back or not, but it seems clear from the discussion the chances are it will come back and perhaps next time it'll do the job properly.. RT has side effects of course, mostly short term, but some long term (I still want to clarify those) but I have agreed to go forward with it.

However since this is going to be 5 days a week for 6 weeks, I'm not very happy at the idea of travelling to Utrecht, so the doctor as agreed to ask the hospital in Tilburg, if they can handle it. Tilburg is the next town from us and a much shorter trip. We should hear soon if that can be done.


So..round 4 (I described rounds 1-3 in the other blog) starts probably next week.


I'll keep you posted.