Friday, 30 July 2010

RT30 5 to go.

Aside from being very early because I needed to keep the day clear for the big move to the new house. the zapping was fast and uneventful. As indeed was the doc's controle consult which went a bit like.

"How are you?"
"Fine thanks just a bit sore around the neck, canI get some proper cream for it"
"Yes of course, I'll get the nurse"

He scribbled some notes and left me in the room to await the nurse, who gave me some creme with Aloe Vera in it to aid healing.

Well he might have mumbled something about being pleased with progress and nearly at the end, but I wasn't really listening as I was half asleep.

Then off to the zapping which was clockwork and quick

Getting ready to pack up the computers and stuff now, so will sign off and catch you again hopefully on Monday.

Thursday, 29 July 2010

Small disruptions to reports

We're moving house today, so not quite sure what our internet status will be till we plug the bits in at the new house and see.

If there's no access I will update this when I have access again.

RT 29 6 to go The end is in sight

Rt 29 with the Opaal machine, was quite eventful, mainly because it broke down before delivering its final zap which left me stuck on the table for a while. this was also the start of the 2nd set of boosters, at a reduced dose. so from now on I have to look forward to less rads and things starting to heal.

I managed to get a few pics taken of me in the contraption,

yes that corpulent mass is me pinned down and getting ready for my zapping.

The dietician appointment was also delayed, due to the machine breaking down causing some holdups But same routine, different lady this time, I have dropped another half kilo or so, which is not surprising with the problems I have had chewing recently, but thats still well within safety limits and my muscle tests are actually improving, so no problems with loss of muscle tissue, just dropping a bit of fat.

She was also pleased that at this point I am still eating and drinking ok, at what she said would normally be the pinnacle of the side effects, So I have got through it all relatively unscathed and I'm delighted to hear that things should be getting better from this point on.

The end is also literally in sight, as I collected todays appointment list for next week, there in black and white on the Friday appointment are the words Laatste Bestraling.. Last radiation...feels really good to see that!

I'm healing!!!

The skin on my neck is now all crusty and scabby..hmmm nice..but the important point is that it is actually crusty and scabby and not all wet and weeping which means it is in fact healing now that it is no longer getting a daily dose of rads.

Still hurts and tender to the touch but a marked improvement the last day or 2 so I'm quite sure the doc won't have any issues with me putting some moisturising creams on it when I see him tomorrow.

My tongue sore also appears to be improving, its still there, a big white/yellow glob under my tongue but its not throbbing and screaming at me constantly whch really is a relief as that was the most excruciating pain ever..

Most of the pain now seems to be centred around the tumour site, which is not unexpected since thats what they are aiming at. Friendly casualties appear to include the teeth and gum areas above and to the side, which are quite painful to the touch and restricting my gape considerably. Pretty sure I am going to lose the tooth above the site, it is wobbly and painful so probably infected despite all the oral care. Time to make an appointment with the annoying time wasting hygienist to check it out

Amazingly..I am still able to swallow, though actual mastication is a major chore and painful, if I can get it chewed up it goes down no problem. I suppose I just have to avoid the KFC for a couple more weeks.

Getting ready to go for todays zap and dietician appointment, but thought I'd comment on the neck which I am really pleased about.

Wednesday, 28 July 2010

RT 28 ...7 more to go


grumpy driver hassling me to hurry up when he comes early.

Zap normal, tech's a bit worried about neck and want me to report to the doc, otherwise, same old routine.

Tuesday, 27 July 2010

RT 27.....8 to go

White merc for a change, another mad woman driver...I mean considering these taxis specialise in the transport of patients, many of whom are really quite poorly you would think they would train the drivers to be a little more gentle in the gas/brake usage??

Nothing to report, uneventful, home now, tired going to have a nap and then see about a nice plate of mince and tatties as per my mum's suggestions. ;)

getting quite tired now

Have to say its starting to get to me now, the narrow focus RT is beginning to have quite an impact on my mouth, up to now I've been eating and drinking fine which has kept my strength and spirits up.

But as my Jaw becomes swollen in addition to the increasingly sore tongue and gums, from the RT and I find myself less able to chew effectively and I am starting to tire. Added to that the drowsiness of the Oxycontin and things start to become a huge effort.

I craved some KFC last night, and we drove over to the only KFC place in Breda to get ourselves a bucket, but in the end it was like eating cardboard and I could barely get it down...I did in the end, 'cos I'm stubborn about things like that but it was kind of a wake up call.

Going to try some less normal food tonight, something a bit mushier and see how I get on with that, but if that fails its time to ask the dietician for some supplements.

Monday, 26 July 2010

RT26 boost 3, 9 to go.

Time for a single figure countdown

Another minibus today with mad woman driver, but got there ok. Zap uneventful as usual, but tech noticed my skin is taking a beating and wasn't too pleased at me using moisturising creams on the worst area without permission from the doc. I don't really see the fuss, since that area is no longer being zapped, but I will check with the doc on Friday. In the meantime I'll use the thick white cream they gave me to keep it moist.

Nothing else to say....anti-constipation meds worked..once at home, and yes once when I went out to run an errand...I ran back pretty sharp when the rumbles started..fortunately I made it home in time.

burns hurt

The skin at the base of my neck took quite a beating, its now starting to heal and in the process is quite painful. The skin itself is very red, dry and parchment like and I am quite worried it might tear, adding to the discomfort. As its not being irradiated now I have applied some soothing moisturising creams to help it recover.

Interesting point is the area of hair loss around the chin on the red areas...most of my right side has stopped growing facial hair, though there is still some growth, but the difference between left and right after a few days of non shaving is marked.

I had an attempt to not take my OxyContin yesterday, at least I managed to avoid my morning pill, but by the evening my mouth was burning and my tongue was screaming at any attempt to move it, so I had to take one in the evening. I suppose cutting back is the best I can manage at the moment.
Sorry about the poor quality pic, trying to view the sore spot in a mirror with a crappy phone cam.....don't think it quite stands out, but trust me I am suffering.

I was quite shocked after going to the chemist on Friday, by how much OxyContin I was given, 3 boxes full, thats 45 days worth at my current rate of use. Given this is an addictive drug, that seems excessive to me. I am going to have to find out at what point i need to start worrying about addiction and make sure I don't reach that point.

I am having to stay at home today, at least until the anti-constipition meds (caused by the OxyContin) do their thing, I can't imagine anything worse than being out and about when those kinds of meds decide to do their thing.
Todays Zap is at 5.25pm...lets hope they have done their job before then and don't decide to start in the taxi.

Saturday, 24 July 2010

Casualties of war

A couple of my teeth on the irradiated side of my face are feeling a little loose....I hope that I'm not going to lose them but it may well happen. Teeth and Radiation are not a good match and there's a strong chance that I may lose some or all of them on that side. This despite regular brushing and fluride baths. :(

Will have to see if the insurance company will actually pay for implants if the worst comes to the worst.

Or it'll be good old fashioned teeth in a night jar before long.

Friday, 23 July 2010

RT 25 boost 2

I had the grumpy driver again today, who usually takes me all round the houses, but since there was apparently a massive traffic jam on the roads to Tilburg which made him chuckle each time it was mentioned on the radio, we went a fairly direct town to town route with no problems.

Zap was standard as always. Scouse tech was quite chatty today, she was pleased to see I was talking easier and also said how surprised she was I was still eating and drinking ok. Her way of putting it made sense to me. My skin is quite red and angry looking, where the radiation has been applied, though in truth its not bothering me a huge amount,but inside my neck is going to be just as angry and irritated and they would normally expect me to be having a lot of problems from that.

Aside from the absolute agony from the burn/sore on my tongue, I really am not having any major issues.OxyContin, the morphine like drug I am taking for pain is controlling the tongue pain quite well and I also have a lidocaine gel to apply to the sores if it flairs up. So all in all the pain management is going well.

Drs Oie said it was ok for me to take another OxyContin before bed, as it tends to have worn off by bedtime and I often wake up when I scrape my tongue in my sleep, so that will help. Other than that he's happy with progress.

Time for a recap then. At the moment I've got a pretty interesting collection of drugs going on,
Fluconazol Sandoz to keep Candida at bay...seems to be effective.

Caphosol to handle mucositis, which seems to be doing well aside form the established sore on my tongue which it helps with, the fact I have no mucositis elsewhere in my mouth seems to suggest its working well.

Lidocain gel...which I have to be careful I don't swallow as it will numb my throat and make swallowing quite tricky, though its effects are temporary and wear off after 20 mins or so, it is quite welcome when things flair up.

Oxycontin the high end painkiller which is a morphine substitute with pretty much the same effects as other opiates.
I also still pop a few ibuprofen or paracetamol since the Oxycontin takes a while to reach full effect but prefer the immediate relief of the lidocain.

I'm still eating and drinking ok, though I have taken to using the lidocaine before I eat to avoid pain.

The Oxycontin does leave me a little dull of mind and needing frequent naps, also as with all opiates its giving me a bit of constipation, though so far not total, and I've been given a script for some laxatives to ease things along.

I'm still in overall good condition, to everyones surprise at the clinic, low stamina and drug induced sleepiness not withstanding I'm bearing up well and as the radiation field levels become reduced from this point on I should start healing and getting back to normal.
Mentally as I say am a bit dull from the Oxycontin and getting things done can be quite an effort of will but thats the drugs rather than me. I would rather go for a nap than put my shoes on sometimes.

Taste is still off, but seems mainly based around an aversion to fatty foods, so I am avoiding them, as well as acidic fruits.
Saliva levels are still ok, only really find my mouth is dry in the mornings, and water /coffee hits the spot quite well.

Actually thinking about this, i think I'm in better nick than I was last week, how much that is due to the Oxycontin helping with pain I don't know but I do very much feel like we're on the home straight now and and looking forward to the end

Thursday, 22 July 2010

R24 Boost 1

Well the new sequence started today, they said it would be quicker but in fact it seemed a little longer as the zapping machine seems to take an age to whirl from one side..give a long prolonged buzz, then move to the other for an equally long buzz.

But I guess there were photo's again to sync it all up..We'll see tomorrow.

Dietician appointment today as well, I have lost weight, about a kilo, nothing to worry about and lets be honest I need to lose a few. But its mainly due to my not eating as much fat as before due to the taste being quite offensive at the moment.

Ahhh but there is of course a side effect of the morphine which is also giving a false reading on the weight...good old fashioned constipation!
Nothing thats causing me any issues yet, but I've not "been" since I started taking the stuff... 3 days now..most unusual for me. I have to try to drink more full fat milk and take some fat in some form to help ease things through, as well as discuss with the doc tomorrow who will give me some laxatives to get things moving before it becomes a problem.

ahhh Cancer, who'd have thought it would have me detailing my toilet habits on line eh!!!

Wednesday, 21 July 2010

RT23 wide range all done

That had to rank as the longest taxi ride I have ever had....the main road out of Breda to the motorway was closed forcing the driver to go the wrong way on the motorway, take 1st exit then go in the most obscure route so far.

But got there in the end.

Thats the last of the wide beam treatments on my neck. This is the point where it will either get very very unpleasant or if I am real lucky will simply heal up and not trouble me....hmmm we'll see.

Tomorrow we start 12 narrow focus treatments on the tumour site. This has the most potential to cause damage since its quite likely the skin on the jaw will suffer and burn, but as with every other day, we have to wait and see.

Morphine is working well to control pain, but leaving me a bit woozy and snoozy...which is exactly what I am going to have now, a short snooze.

Tuesday, 20 July 2010

RT22 Time for the heavy stuff

Mad bus driver arrived 20 mins early as I was in the shower complaining he had another pick up to go to so this morning was a bit of a rush. But I made a point of finishing my shower. In the end we were actually late for my appointment since the other passengers, the nice lady from the middle of no where who was doing her last RT today, was not ready either when he showed up.

Anyway...Scouse tech was very concerned by my lack of speaking today and clear and obvious discomfort when having to talk to tell her details, so after therapy she arranged an immediate meeting with Dr Oie, who wanted to be sure there was no infection. there isn't, just burns/sores/mucosits that the Caphosol is working on but needs time to get rid of.

He gave me an script for a gel to numb the area and provide some pain relief, he also gave me a script for the dreaded morphine that I've been hoping to avoid. But no, I think this is needed now. Caphosol works well to take away the pain at rest but any form of talking and some eating is agony, so its time for the pain killers.

Also was mega tired today when I got back, after pottering about for a bit had to have a lie down for a few hours, of course I woke up as soon as my tongue scraped over my teeth....owww...not the nicest way to wake up.

Last of these wide beam treatments tomorrow now, thats a good point to be at, I've reached a milestone.
Morphine will help cope with the expected post RT side effects and also expected skin burns from the concentrated beams I get for 12 days now.

Monday, 19 July 2010

Mum and Auntie Ann


thanks for checking my blog....look down below this post where it says... 0 Comments in blue

click on it, and you will be able to enter a comment, just put your cursor in the box and left click your mouse, and start typing.

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There that so hard?



Nothing significant, nice audi driver again but I wasn't able to chat with him this time as my talking is extremly painful. The Caphosol is working well to ease the pain but needs a bit of time to let the tongue heal so that I can use it effectivly.
I can take it 10 times a day, I don't plan to go quite so mad, but I will try 6 or 7 today and tomorrow to give it a head start.

RT was nothing eventful, if I am right I have 2 more of these left then the narrow beam stuff starts...speak, or rather make lots of grunts and hand motions, to you tomorrow.

2nd dose

After the 2nd dose about 3 hours later, yes there is a definite improvement. Talking and eating or using the tongue, is still painful, but at rest I am no longer experiencing the crippiling pain I was yesterday/this morning.

The pain relief is most welcome, lets hope it also does some healing to aid with speech and eating.

Caphosol arrived

Arrived just before 11, 1st thing I did was rip open the box and mix the solution and wash mouth.

Have to say relief was immediate as far as pain goes, but tongue stiffness still evident.....Effect has worn off a little after 15 mins, but certainly not as painful as before...will repeat process in a couple of hour, fully expect it to take several doses to provide proper relief.

Sunday, 18 July 2010

owww part 3

Sunday night/Monday morning and winding down now....mouth is agony, just agony, even brushing my teeth is an absolute nightmare of pain, when the foam gets into the sore parts, but fortunately the salt and soda mouthwash calms it down a bit. I've been squirming and squeaking all day as waves of pain shoot through my mouth and tongue, there's been little relief from it. Speech is variable and painful so I've kept quiet most of today.

I have managed to eat quite a bit today though which is really important when these attacks strike, lots of mushy, no chewing required food, and lots of water to wash it down.

In a strange development, the bald area on my chin where the beard fell off and was smooth as a baby's bum since then has developed some stubble....this is means it may well recover...Unfortunately it still has to endure 3 more days of radiation on that spot, but I am hoping that the hair loss in that goatee growing region won't be for long at all.

Counting down the hours till I get hold of the Caphosol....I really do hope it can remove or reduce these symptoms...will update here of course if it does.

oww part 2

Home made fruit juice with pineapple, mango and apple......does not go well with a mouth with open and painful sores.

be is MEGA painful

that is all.

Saturday, 17 July 2010


My mouth REALLY hurts....not sure if its candida or mucositis....I just know it really hurts, wish I had that bloody Caphosol, but then again I am probably expecting too much from it. A quick check on the ups tacking site shows they have the address now so it should be here on Monday.

All I can do is pop painkillers and use my soda and salt mouth washes..they help a little.

I suspect some more no talking quiet time tomorrow.

The Caphosol Saga

It may end up being quite a saga but as I have mentioned it a few times before I better discuss.

Dr Oie gave me a couple of days sample when I had my 1st mucositis attack it seemed to work within hours, but unfortunately its a new drug here in Holland and not currently on the list of approved meds that the insurance company will pay for. And the doc had no more samples to give me. so he gave me a script for the pharmacy but warned me I would have to pay for it myself..Fair enough thinks I. If it can cure the crippling pain that I experienced I'll fork out a few bob for it.

Sure enough it was a few bob, despite the docs efforts to supply me with a letter to ask for a free pass, and I ordered 2 weeks supply at €177 from our local pharmacy who promised it would be there Monday.

But I was aware after a bit of googling, that Caphosol could be bought straight from the makers at for much less..but its good to ensure you get things from reputable sources.

When the Pharmacy failed to source any and admitted they would have to order it internationally...aha twigs me, they are probably going to get it from the supplier, so I might as well do the same. I asked and received a refund and went home to order it online. a months supply for €199.

Unfortunately being a bit of a dozy bugger, I made a small error on the address field on my application and left off the house number...I spotted the mistake a few minutes after I received the acknowledgement of my order and was pleased to see they had a send correction option on the site.
I sent a correction and informed them of the full proper address...and even received a confirmation of the correction..phew.

So I waited
and waited
and waited
and on Friday I am starting to I sent them an email to ask if they had tracking info. sure enough they did, they sent me a screen shot of the UPS tracking report which showed that UPS were stuck because they did not have a complete address. They asked me to contact my local UPS office and resolve the issue

ARRGGHHHH what was the point of the corrections form if you don't pay any bloody attention to it????
I politely, yes I can still be polite, pointed out I had sent a correction on the address within an hour of making the order and that they really should have taken note of it and could they please contact UPS as my ability to speak due to the lack of these meds would complicate matters (yes I know..milking it a bit but so what)...

I got an email a few minutes later saying they had contacted UPS and I should expect my parcel shortly....shame UPS don't do weekend deliveries though..Lets hope its here on Monday because my mouth is really starting to hurt a lot and I want to see if the Caphosol will be just as effective this time as it was before.

Friday, 16 July 2010


Mad mini bus driver again, but usual and very uninteresting zap.

My skin is certainly getting to be more tender and irritated by the radiation, the sunburn effect is now quite pronounced and as soon as I am done with this I'm smearing on some cream.
Sad to report also the little tufty jazz bit of remaining beard under my lip is also dropping out...and I have decided the fat american/german look is not for me, so off with the moustache.

Mouth hurts like hell too, mainly under my tongue, the Candida is still present and causing issues, dunno if I am also experiencing mucositis as well but it is all very painful today. Hopefully the Caphosol will arrive today and help with calming the mouth down.

So end of week recap time.

Not a lot more to say really, sore mouth, irritated prickly reddening skin, shocking tasting saliva and ever decreasing sense of taste are the current main symptoms, fatigue is still variable, sometimes it hits and the rest of the time I am perfectly fine but need to pace myself on bike or walking. However well I feel I certainly have no stamina. Sore throat has pretty much gone for now, though I am still noticing a tightness when swallowing so need to avoid big mouthfuls, not that I can have big mouthfuls as the taste and texture of food really does put me off eating.

Weekend is here and 2 days of R&R to give my skin a break, then the last 3 days of the wide beam radiotherapy.
After which we have the start of post radiation therapy SE's to look forward to and document.

Thursday, 15 July 2010

Taste...who knew it was so important!

There are 2 issues with my sense of taste..probably mainly due to the nasty tasting saliva/candida.

1) everything tastes bland and dull.
2) anything remotely fatty, emulsifies immediatly in my mouth and tastes like raw cooking fat.

Today I had a jam doughnut and a sirloin steak, not at the same time obviously. Normally 2 of my favourite foods.

Both were a dull boring slimy chore to eat, but eat them I did simply becuase I was hungry.
I can smell ok still and they all smelled lovely, but the whole joy of eating, one of my favourite things to do btw...has gone as soon as I put the item in my mouth.

There's a 3rd issue as well, not directly related to taste, but I can't eat anything sharp or stings the candida sores like nothing I've ever felt.

Can't wait for the Fluconazol to kick in. Maybe then I can try some spicey food to cut through the nasty.

Must try to look on the bright side...its only a few more weeks.

Oh still no Caphosol...hopefully tomorrow.

And now the end is near RT19

Nothing special about the zapping, though a very nice friendly chappie in an Audi A4 who drove me today, was telling me all about his retirement plans in Thailand...sounded really amazing. As was his reasons for disliking Holland now...pretty much all the reasons I dislike the UK, he was intrigued to hear that Holland seems to be about 20 years behind the UK in its drop of social standards...that being the case in 20 years from now when Holland is like England is now I'll see about a retirement home in Thailand myself

Anyway Zapping was normal, photo's 1st which makes it last a minute or 2 longer, but no other issues. The scouse tech noticed my skin was getting quite red and suggested I get some cream so she got the Dr's assistant to arrange that. Which is good as it was starting to get a bit noticeable, Bina and I took the dog out last night and the change in temperature really irritated the hell out of my skin. The cream should help a bit..

Had Dietician appointment today, no significant weight loss and my grip test actually is stronger each time I go...maybe thats my super strength power starting to kick in.

She did tell me something interesting, which Dr Oie had also mentioned but I had forgotten. I get 23 wide range radiation treatments, of which this is the 19th...after that I go to a narrow field more aimed at my tumour site. Which means really that I am almost done with the neck zapping. She did warn me though to expect the full side effects to kick in once the wide range treatment stops, most radiotherapy pain/discomfort is not caused by the actual therapy, but by the healing process after..So next week when we move to narrow range, the other parts will start healing and the we "may" get the dreaded sore throat from hell.

That said, she is also pleased that I am still able to function as normal,eating and talking for the most part without problem. The Candida should clear up in 3 to 4 days which will be a big improvement in the tongue functions.

Wednesday, 14 July 2010

RT18 over half way

Only just over half way, today was 18 of 35. So its home straight now
Minibus today, mad driver, kept veering off lane...phew!!

Throat still remarkably good, mouth hurts though, going to go get my Candida meds in a bit which will make that a bit better I hope.

ermmm thats it...more tomorrow..

oh..still no superpowers, and my crying like a girly power appears to be wearing off (at last)

Tuesday, 13 July 2010

RT17..Candida strikes

RT 17 wasn't especially interesing...y'know the routine...go there, get zapped come out. But I did have a control visit with Dr Oie, who informed me the "burn" sores I have are candida outbreaks...oh...ok well thats fair enough and fortunately a quick fix. Got to get meds from the pharmacy tomorrow morning as they were out of stock...must be an outbreak ;)

The beard falling off at my chin rather than my jaw, is due to the angle of attack of the radiation beams..apparently it might cause my hair to fall off at the back as well, nice something else to look forward to. Dr Oie is sure its temporary.

No sign of Caphosol, though wasn't really expecting it today, maybe tomorrow.

Other than in good shape still, swallowing is fine, talking is ok but a little slurred and sore, "burns" are bearable and hopefully quick to fix when I get the meds. Bat taste is due to thickening saliva and just need to keep drinking water to clear it. But my sense of taste is tainted for sure.

I even had a few drinks tonight at the end of academic year tastes terrible..but cider was very refreshing, though it did sting a bit. I know I'm not supposed to drink but bahhhh..

Monday, 12 July 2010

And week 4 starts RT16

Nothing new to report. Went. Zapped. Came home.

That was probably a bit too quick, ok ok, the only real update is regarding my attempts to get hold of Caphosol. The pharmacy could not get hold of it from their usual supplier, and therefore said they'd have to order it from an international supplier. I decided to grab the chance to get a refund, since they were chargung 2x as much as the makers on their website.

So I went online and now have a months supply coming for €199 much better than the pharmacies 2 weeks for €177.

The receptionist at the clinic also gave me a letter from Dr Oie to give to the pharmasist to ask them to provide the drugs for free, but we already tried that last week and they said no, so I think this is the best option for now..After all we're not even entierly sure its going to work for the full duraiton of treatment, just becuase 3 days worth cured a very nasty attack, it does not mean it will work again or if the mucositus gets worse...still...worth a gamble I think.

Speaking is pretty much normal today. Swallowing is not too bad either, though since the weekend my mouth has been a bit sore from the "burns" inside my lips. I plan to discuss these tomorrow as well as why the saliva in my mouth tastes slightly acidic. Also surpisingly I seem to be suffering from an over abundance of this nasty acidic saliva...better than the lack of it I had last week.

ok that padded things out nicely...time to go off and do my soda and salt mouthwash.

Sunday, 11 July 2010

more burns?

hmmm got some more apparent burns inside my mouth at the edges of my lips upper and lower, right in the corner. they were stinging like mad after I used my fluoride gel this morning...I'm a bit confused why this particular area of my face and chin are showing signs of damage and not the area on the side of the face where the tumour actually was.

Anyway...painkillers taken and mouthwashes applied as usual taking the edge of the pain a bit.
Overall my mouth feels like its burnt and indeed burning, I hope they have some Caphosol ready for me at the pharmacy tomorrow..and I hope that it fixes the burning.....Need to speak to the techs tomorrow about their aim.

Saturday, 10 July 2010

Weekend update

Well the beard has gone, over the course of an hour or so's itching scratching and plucking, pretty much a clean half of my beard came out, that area of my chin is now oddly smooth and follicle count is 0....Even with a 5 o'clock shadow it stands out like a pink beacon. So out with the clippers and I removed the rest...I kept the little tuft under my lip for posterity...looks a bit silly but ah well...

I guess this marks a point where the skin is now reacting to the radiation so no more wet shaves...which seems mad to me since electric razors are much harsher on your skin....I'll try it for a bit and see.

Skin is quite red,itchy and warm to the touch, not unlike sunburn, especially around the scar. I am finding it extremely hard to keep out of the blazing sun, during this amazing weather we are having here, which certainly makes the itching worse. I am off in a bit to source a nice wide brimmed hat, so that I can go into town tomorrow and watch Holland win the world cup on the big screens....fingers crossed.

The sore on my tongue was absolute agony a few times last night as my tongue scraped around my teeth....woke me a few times...but it does seem to be healing slowly

I'm not quite so chipper today, everything seems to be a bit of an effort, psychologically and physically so I think after I've done with the hat shopping and a few other shopping chores I'm going to have a lazy day at home today, build up for tomorrows excess.

Only other thing to report is that the muscles/tendons in my neck (surgical side) really ache and are tender to the touch, as is my shoulder which is tight and sore in sympathy. Probably normal...but as always I'll mention it in my next control meeting with Dr Oie.

Friday, 9 July 2010

My Beautiful hair.......sob, oh and RT15

Well facial hair....I am sooooo pissed off. since I wear my facial fuzz in a nice trim goatee style I was rather hoping the RT would affect the area around my cheek and jaw and not have any impact on my much loved furry facial pet.

But sadly no, I noticed after todays treatment while looking in the mirror a small bald spot, which when I rubbed it, resulted in a larger bald spot....and of course you can't stop rubbing and pulling when you start.

Lo and behold...almost half my beard has gone.

sob...I do hope it grows back, I hate not having my furry facial pet.

RT15...again not a big deal, aside from forgetting I had my mobile phone in my pocket which the tech kindly took out of harms way.

Docs control visit was more interesting, he was very pleased to hear that Caphasol had worked so well on my sore mouth, and filled in a short survey from the makers, he gave me a script for it but did warn me I would have to pay for it, and it was expensive, he gave me a form from the makers that he hoped would let the pharmacy supply it free but, in the end they didn't.

Also something to help me swallow, Ulcogant suspension, I have to take it an hour before I eat and it will ease the pain.

The Pharmacy did not have any Caphsol in stock, and sure enough I would have to pay for it and boy is it expensive, €177 euro's for 30 doses...ouch...I have seen it cheaper online but I am always wary of these online pharmacy sites. So will get it properly and see if I can claim it back at a later date. I have to wait till Monday though as they had to order it.

Thats the end of week 3...and time to take stock. Week 2 was indeed when the side effects I was told to expect kicked in, the sore mouth/tongue being the worst of them, and happily eased.

Swallowing has become progressively more painful and physically a little harder to do each day but for now I am still able. The use of Paracetamol and Ibuprofen an hour before i want to eat helps a lot I am hoping the new meds will do the same

Skin wise...well I suppose the loss of the beard is a skin issue, but aside from redness that looks and feels a little like mild sunburn there are no other problems

Fatigue levels are variable really, sometimes I am really tired and need a nap, other times I'm perfectly normal, but i do notice much less stamina when cycling or walking. I think the secret really is just not to over do things.

The mornings are the hardest, waking up with a sore dry nasty tasting mouth and usually a sore scratchy throat. But after the morning dental routines and lots of water it gets manageable.

Overall though considering what others have said they are like at 3 weeks I have bee mega lucky and am not in bad shape overall, just need to keep swallowing and eating what I can.

Dr Oie said I could stop using the Chlorohexadine mouth rinse, its a powerful anti bacterial agent but now when I use it it stings like alchohol so I am going to stop for now.

Time to charge up the clippers and remove the other half of the better come back when this is all done!!!

Thursday, 8 July 2010

RT14 and new dietician

RT14, nice merc again taking me to Tilbug....another new driver, at least this one was faster and put his foot down while still going a very long route, not too chatty which is good at the moment, but had some kind of fascination with Sean Connery??

Oh well, conflicting opinions on the sore on my tongue..RT tech says its the therapy, dietician says not...we'll see what doc says tomorrow when he has a good poke around in my mouth.

My scouse RT tech wasn't so pleased to hear about my wet shaving, but I assured her as soon as I felt any irritation I would switch to the electric, my skin isn't showing any signs of problems yet though so I think I got away with it.

Not feeling too bad today, mouth is a little sore but wasn't as dry when I got up, though after coming out of the clinic I do feel a little light headed...might just be hunger so am going to have something to eat before heading to work to finish up my marking

Had a different dietician today who's quite happy with my weight and grip strength, I told her about the Caphosol helping with the mucositis attack at the weekend, and she pointed out a pack of samples she had on her cabinet which I thought were for me, but it later turned out I have to ask Dr Oie for more tomorrow.

Throat pain is a little worse/about the same as yesterday, still able to swallow and Ibuprofen and paracetamol take the edge of the pain allowing me swallow ok will see how I can manage food after I've entered this, but certainly I think its time to start switching to softer foods, had nachos with beef and chillies last night..good but starting to get a bit too hard.

Oh and dietician has no issue with ICE CREAM ....better go buy shares in the local ice cream factory..I'm going to be buying in bulk.

Wednesday, 7 July 2010

ooohhhh that's gotta hurt. RT13

I have a rather nasty looking sore on my tongue, it may have been caused by an acidental bite or by RT, I'm not sure..I have bitten my tongue a few times as it's been slipping around somewhat unhappy with the new shape of my mouth, and its also slightly numb still so not as sensitive as normal so a bite is quite possible. Perhaps a combination bite and RT burn, but I better mention it to the Dr on Friday.

RT13...nice new E class Merc took me an interesting magical mystery tour way to the clinic due to a hold up on the motorway, but we got there in good time for a totally uneventful zapping.


I took bottled water as planned but never had any chance to sip it. I just woke up as normal with a major dry mouth, sore tongue and horrible taste..oh and the throat is a little worse.

Dryness and taste quickly recovered after some water and a mouthwash/teeth brushing.

Swallowing getting harder but still currently possible if I build up to it and don't try to swallow too much, be that liquid or solid.

Talking is still affected by the stiff tongue but no noticible pain if I talk at a steady slow level.

Taking Ibuprofen and paracetamol to help with swallowing pain, as well as the Caphosol to control the mouth far its just about working.

Tuesday, 6 July 2010


No Merc to take me to Tilburg, this time a minibus shared with an old fella also heading to the clinic he spoke no English and unfortunately for me also seems to be suffering form speech problems because I really could not understand a word so he chatted or rather shouted incoherently to the driver all the way.

RT12 was uneventful as usual, aside from getting a telling off from the operator as I tried to quick scratch my nose before the machine fired up....A voice boomed out, over the intercom "Will you please lower your hands"

The Caphosol seems to work quite well, my mouth is less sore and my tongue stiff but I am talking. the sore throat is no better or worse at this point but swallowing is proving hard. Time to pull out the big guns ICE CREAM!!!

The gum around the surgery site has become very velvety as the skin seems to be dying ( or being infested with fungus..ugg)

I shaved again this morning with no apparent issues...not going to chance this too often though but so far still able so why not.

Fatigue levels about the same, nothing major to report....I will take a bottle of water to bed with me tonight to sip when I wake up with the sticky mouth rather than go back to sleep as I did last night resulting in my stuck tongue

spit or swallow

Just had some sashimi for lunch...and nice soft slimy food that would normally slip down nice and easy.

nope, hurt a lot.

Now THIS is when things get interesting.

Woke up this morning, had to crow my jaws apart.

yes I woke up this morning,.....had to prise my tongue off my...ermmmm not that won't work, love the blues but can't see me making a song out of that. :D

Anyway, had a bone dry mouth this morning, my tongue was rooted to the roof of my mouth and it took a fair amount of thinking about tasty food to get some saliva flowing to free everything up.

But I am talking..even though its in a slightly affected way due to stiffness where there was pain. Seems the new mouthwash is doing something.

Pity I cant get it down the back of my throat where the sore spot is starting to impact more on swallowing. Watch this space, I think the dreaded sore throat from hell is starting to appear.
Got a very late appointment today, will update after that.

Monday, 5 July 2010

RT 11 and slooooow taxis

Today was my 1st trip to the clinic in a taxi....boy was it slow. I assume the taxi company are paid on a time*miles formula since the driver took the longest route to Tilburg I've ever seen and was in no hurry.

I certainly won't have hurt them to have added on the extra 40 mins I ended up waiting when I asked to see Dr Oie about the pain in my tongue that stopped me talking all weekend. He diagnosed mucasitis (already??) and asked what pain killers I tried. I told him aspirin paracetamol and ibuprofen, but that none were effective. So he suggested morphine....hmmm much as I quite like the idea of being stoned for a week or so to remove pain, I don't think I want to go on morphine quite so soon. so he suggested something else, having just spoken to his drugs rep, he had a new product I could try, Caphosol. Apparently its quite effective and used mostly by chemo patients with mucasitis but they are confident it is effective. Its also quite pricey but the rep had left what the hell. Its a mouthwash process you prep by mixing 2 ingredients, rinse, spit and repeat after a minute, and I now have 2.5 days supply.

After spending only 5 mins with Drs Oie though I had lost my place in the radiation list, and had to wait quite a while before I was called in for my daily zap..nothing to report there, no breakdowns. I am back on the Opaal machine this week, which seems a bit more reliable.

Taxi driver waited in the hall for me at least, so as soon as i was finally finished it was time to head home, again very slow and long route.

Soon as I got home used the Caphosol, and I think I noticed a distinct improvement after about an hour, though my tongue was already loosening up by the time I got home and I was able to talk quite well without much pain, I fully expected todays Zapping to have an impact by this evening. So far, not really, my tongue is still stiff, making speech a little slurred but not really more Caphosol before bedtime and we'll see how things are tomorrow.

Swallowing is starting to get a little more tricky feels a little tight when I swallow, soI need to try to make sure my food is properly chewed and wet before swallowing, but so far still able to eat without pain.

Via the medium of mime

I can't talk at the moment. The Radio Therapy I am having has started to kick in with its side effects, at the 2 week mark as promised pretty much on schedule.

As side effects go, its not too bad, and tbh I can cope with just not talking for 4-6 weeks..I'm sure it will meet with everyone else's approval :D as they get a word in theres the bonus that anything I say won't be misconstrued and turned into something nasty.

But it is a bit strange, funny and frustrating. I "can" talk if I have to, it just hurts like hell when I form certain sounds which are a bit random and too painful to experiment with. Today is a little easier than yesterday but fact is I have another RT treatment later today which will kick it back in tonight and subsequent treatments will make it progressively worse. So silence is the other of the day now.

I'm kinda dreading this weeks sessions though since the dreaded sore throat from hell is due to make its appearance any day now.

Of course the worst thing is, while its perfectly possible to indicate you can't speak with a few hand gestures..I think its pretty much impossible to say, I can't speak, can you speak to me in English!!!!

I am thinking of getting a few t-shirts printed up, but can't think of anything funny enough to put on them, I'll probably just have to carry a card round with me, "Sorry can't speak at the moment due to medical treatment, please speak to me in English..thanks"...need to be a big card, might just hang it round my neck.

and maybe take up mime classes ;)

Sunday, 4 July 2010

a little better today

Must stop starting these reports with ok....tongue is much less tender today but still hard to say certain I am still communicating through the medium of dance and mime..and getting damn good at it too.

Got some Paracetamol to boost the Ibuprofen, but am going to have to get something stronger, if it gets as bad or worse than Friday night/Saturday morning then it'll be on to the heavy stuff pdq.

Saturday, 3 July 2010

Quiet if not silent

Ok, today my tongue is still sore, and stiff at the back, attempting to move it around my cheeks causes some issues. But I can talk a little more today, though not without some pain. I am doing my best to avoid overuse of my tongue though so sign language and grunts are the order of the day..You would think after 10 years together though that Bina's knowledge of my grunts would be considerably better than it is!! sigh.

Taking some Ibuprofen which is taking the edge of the pain, and hoping the weekend without zaps will calm things down. But of course its going to come right back when we start zapping on Monday. So will make a point of mentioning the pain and see what painkilling goodies are on offer.

Fortunately, though it is interfering with my ability to move food around my mouth, for chewing, my swallowing is still good and largly unaffected, the pain there is still very mild...thats a plus for sure, as things will get much worse if/when that becomes a problem.

A quiet Brian, is easier to deal with than a hungry Brian.

Friday, 2 July 2010

Silence is not golden!

Ok, the pain in my tongue is now quite bad, and I've taken some Ibuprofen...and told the family I am going to avoid talking for a bit and see if it settles down.

Also been forced to take a few naps today, so some fatigue creeping in. Managed to eat ok but talking is painful so I'll give it up for a while....Bina will finally get a word in edgeways :)

RT10...and rest

Ok RT10 was interesting, in the sense that it wasn't exactly routine, the machine stopped 3 times and needed to be reset. Which is a bit of a pain as any longer than 3 or 4 mins pinned to the table starts to get a little painful in the back of my neck, and indeed 10 mins or so on the table and my neck was aching.

But thats RT10 done, 2 weeks in...side effects are now starting to show but so far nothing that can't be managed. I'm pleased about this, the longer the sideeffects can be delayed the less impact they'll have on me overall.

Time for the end of week recap.
The dry mouth is not too big a problem, though I have to remind myself to chew gum, odd is it only being able to chew gum on one side of your mouth, it just feels wrong... And/or use regular mouthwashes. So that is not a problem.

I have a painful "spot" at the root of my tounge/back of my soft palete which is unpleasent and sometimes announces its presence when I move my tongue around while chewing.

The sore throat is getting a little worse and I am now aware of a slight niggle when I swallow..but at least I can still swallow without effort.

My jaw is feelling a little tight (on the right side of course) and swollen though there's no visible evidence of any more swelling, and it's "tingling" a lot...odd, not unpleasent, and probably more a healing thing than RT, but I do find it harder to open my mouth due to the tightness, my finger and thumb stretching exercices are becomeing a little more painful too.

Physically, yes I am starting to tire..not helped by the fantastically hot weather I'm sure, but I do notice my engery reserves are dropping and after a walk or cycle, I am slow to recover, I even went to bed at a decent time the last couple of nights...most unusual.

People also keep commenting on how well I've caught the sun, but in truth I've not been in the sun much at all..and on closer examination its the area where I have been irradiated which is looking sunburnt :). I'm noticing that if I do get the sun on my head that area tends to be a little sensitive to the I am keeping in the shadows as much as possible.

Emotionally...well, still blubbing like a baby for no reason, one of our collegues from work came round with a big bunch of flowers for us, (combined get well and happy birthday) as she'd been away and had missed me at the office. I had a few girly moments as she was saying how well I looked and so on...damn!

Going to hold off on painkillers for now, the throat/spot is not that severe yet, though we still have to wait for todays zapping to make its effects known.

Taxis are booked for next week and now its time to chill and enjoy a lovely Dutch summer weekend..Lets hope Holland win their World Cup game later, it'll make the town centre quite a party place.

Thursday, 1 July 2010

RT9 and recipies for cancer victims

RT9 was uneventful as usual, photo image to make sure then zap

Side effects are coming on line though. The dryness really isn't too severe today but clearly evident, the sore throat is a tiny bit more noticable but so far still not close to having any impact on my swallowing, its a bit like when you sing too much or have been crying.

Back of my tongue though at the root, right side, is feeling a bit sore today, thats quite noticible now, as well as general thickening of saliva, (mucosis) which I have been expecting, more mouthwashing.

All told though, nothing too unbearable yet..we're nearly a 1/3rd into it and I appear to be escaping the mega wrath of the RT...for now.

Dietician is insisitng I find some "soda" to add to my saline mouthwash, apparently I can pick it up at the dishwasher supplies, its a cleaning product?? Ok now I am quite confused, I think I better get my dutch friend to help me to translate the "recipe" for my mouthwash which explains this soda, I don't want to be getting the wrong stuff.

Ironically she also suggested I should drink a little beer, presumably stout? But as I really cannot abide the taste of any kind of beer I tried to helpfully suggest a little scotch and water might be a good substitute...sadly she disagreed and said it was too strong for me.....hmmmm I would like very much to challenge that assertion, soon.

I'm not really quite sure what to make of my dietician, she wants me to follow her recipe plan and eat lots of prescribed heathly food...but as I keep pointing out, I do eat a very healthy diet. Bina and I both dislike processed foods and prepare meals ourselves. I have as requested, increased my protien intake with fish, sashimi, cheese, etc. So why exactly I should start eating Ragout just because its on her list is beyond me.

I really don't see the point of this at long as I am eating fine, my weight is stable and I am still able to swallow, I think this is a serious waste of time but no doubt at some point it will have some value...After all she's the only one who can decide when I need to switch to liquid meal drinks...hopefully I can avoid those..we'll see.

I also have my list of appointments for next week, so I can now book my taxi trips for next week and its all covered by my insurance. That will make quite a difference to my schedule, speeding things up.

EDIT...Thanks to my friend Dominic and his google fu, which failed me for some reason..Soda, is bicarb of soda...I'll pick it up from the baking dept rather than the dishwasher section.