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.