He's ok

Heard from Nate
He's pretty beat up and in the post treatment stage of recovering....but he's ok.

I am really pleased to hear it since it sounds like he really went through the mill and has had the worst of all the side effects listed. It really shows how cancer treatment is different for everyone, I think I got off really light with my treatmet.

There's not a lot happening at the moment with me, and no appointments due till after new year, so I will take this chance now to wish everyone a Happy New Year and many of them.

Nate?

Not heard from Nate for a while, left messages on his You tube, but no response. If you're still reading this, I expect your feeling pretty low after the rads and chemo, but let me know how your doing?

Tingles

After a week off for various could not make it reasons, had a physio appt today.

Ouch.

That much is to be expected of course, face is tingling like mad at the moment. I asked if there was likely to be much more improvement in the swelling, since it seems to me after the intial gains we don't seem to have much more to show apart from a sore tingly face after the sessions.
Also when I don't go to physio for a week or so, it "swells" up a bit more, I'd hate to have to keep going just to knock the swelling back to semi-normal levels.

We're going to keep going till the end of Jan, if no more improvements then we'll let nature take its course and see what happens.

It has been helpful, thats for sure but I am starting to feel its reached its limits..so roll on end of Jan.

yup Depression

Doctor agrees with me (good of him I thought), I'm in the middle of a depression. He reckons all things considered its perfectly normal after such a major life changing event.

Personally I dunno, I realy don't, I'm quite certain it contributes to it, but since I've had depression a couple of times in the past it may just be something I have to deal with every couple of years or so...or when a major life changing event kicks me in the mouth..literally.

I'm on Prozac and weekly visits, to be followed up with councilling once the meds start to have an impact and I'm feeling better.

Depression

Ok, I'm quite sure now, I have depression. I had a bad case of this a few years ago which prompted my first comments into the blogosphere and its pretty much the same feelings as before.

Cancer related? I dunno, probably, in residual cause kinda way probably. I really can't say, whatever the reason I feel I'm on a somewhat hopeless path, with poor emotional control, insomnia, hyper attentivness, anxiety attacks, lethargy, despair, desire for isolation, over sensitivity to things, and so on.

Its affecting me quite strongly now and so I've managed to snap myself into taking some action and will be seeing my doctor tomorrow to discuss.
Last time a course of happy pills and councilling did the trick, hopefully something similar will happen this time.

Stiff face

I'm tired and quite run down at the moment, really looking forward to the upcoming Christmas break and some sleep catchup.

The pills I've been given to help me sleep are actually good old fashioned tranquilizers, Oxazepam, though they are used for insomnia, I hate the idea of taking tranq's.
All the same, I've had a couple of them now, and I suppose they do their thing. I went to bed at 8.30 last night feeling incredibly drained and tired after a crappy day, so the pills probably were not needed but they let me sleep 12 hours solid.

Long sleeps do have one drawback though, I wake up with my face feeling very stiff and sore, jaw becomes hard to open and of course it aches....thinking about it, it always aches, I've just stopped noticing it as much as I get used to it. Every day I wake up and the 1st thing I am aware of is a sore stiff face..sometimes it loosens up and other days it doesn't. Every damn day!

Today it hasn't, its still stiff and sore, and wearing me down. I'm really quite fed up with it, I want it to go away.

Feeling very down today, rowing with Bina, pissed off, in pain, and all the other crap...I don't know how much of this is related to the cancer, if at all...but I just feel very very down.

oh...that makes a change

Todays Physio was quite nice, more of a gentle head and shoulders massage...a bit of pain thrown in of course, but very relaxing.

I also have noticed something, I am yawning more, and perhaps getting a wee tiny bit wider towards an actual yawn...who knows!!


B

Sore face, but smiling

Face has been very sore and a bit swollen for a couple of days, not sure what the cause is exactly, but it does hurt...physio tomorrow, might help or make it worse.

Went to the hospital today for my ultra sound scan to check on things and guess what...I was a week early....doh!
But you gotta love the Dutch medical system, the guy on the desk made a phone call and boom, I was in. Amazing..you can't imagine that in the UK can you?

Good news from the scan is everything is fine, no oversized lymph nodes either side of my neck, so all seems good. Phewwww...that is a major relief I do feel a lot happier now. Actually knowing there's nothing growing hidden away makes me feel so much better.

Picked up my sleepy sleep night time snoozy snooze pills so will make an effort to get to bed and try to get my sleep pattern sorted.

check up time.

Had my followup with Drs van Gemert...not much to say really, a poke around, a feel and a nosey with the mirrors. No signs of anything coming back which is good of course.

But I did take the chance to voice my other concerns..Will my mouth opening get any better? No not really. Hmm, my double whopper with cheese and bacon days may be over after all.

Is the feeling going to come back...maybe.

Is it gone?

That of course is the big question, and there's really no way to be 100% sure, its a thought that troubles me a lot at times, and is probably part of the reason for my insomia issues, which he gave me some tablets for.
To ease my worries though he's booked me in for an ultra sound to check a bit more. I feel better about that, knowing there's going to be a more indepth look around.

Also had an appointment with the dental hygenist, otherwise known as the apprentice sadist. Since the actual sadist was just supervising her new trainee who took to the task with gusto. Drills, spikes, scrapers, probes and strong flavoured mint polish. He was very thorough and by the end of it my gums were a nice crimson red from the bleeding..but I do have very clean teeth.

My intradental braun brush heads on my fancy toothbrush...don't work. So need to get some dental sticks to clean between my teeth...trust me to believe the marketing hype!

Back to the Pain

After a weeks rest while I was in the UK, I had another visit to the physio today.

Ouch.


I think that covers it.

But improvements in the swelling continue, and my jaw line is becoming more recognisable.
For a short period last week I even became aware of my teeth...I know that sounds off, but I can't feel the few teeth left on my right lower jaw so suddenly feeling them and being able to sense my lip was an odd but promising sensation. It went away soon after though and has not come back since but I suspect this means some nerves started working again and hopefully this bodes well.

Some Self image issues

One thing that I have not considered these last few months, is the way people view me, I know from looking at my handsome face in the shaving mirror that a few things are out of place and not quite as they were. But its not worried me much, Bina hasn't cowered in fear in a corner when I look at her so it can't be that bad.

But something happened today that, shook me, and has continued to nag at me since. I teach programming here in Holland, most of the time to programming students, but I am doing a block where I am teaching artists some coding basics....

Artists being artists they tend to doodle, so when one of my students came up to me after a lecture to tell me she'd drawn me I was curious to see.

It was a nice sketch, very recognisable, right down to the lop sided grin and lumpy jaw and asymetrical face....Kind of a good looking Quasimodo.

Like I say a nice sketch, honest and accurate but...is that how I look, is that what people see? Not how I thought I looked, I never really considered that I might have a facial disfigurement, however mild, and the nature of a sketch is to highlight features, but it wasn't a caracature, its how I am now! Well it has thrown me, quite a curve.

I need to have a long think about how I feel about this, I've never ever been a vain person, but to realise my features have changed so much is a bit of a shocker and something I need to come to terms with somehow...

Something to ponder on indeed.

No one is alone

Nate posted some kind words on here, and I want to return the compliment, he has a video blog on YouTube.

He's putting up a good fight and deserves all the good karma we can send his way, thanks to OCF and other internet bloggers he's not going into this blind and ignorant, he knows its going to be hard and he'll come out of it feeling like shit. But he's ready for whats going to happen and he will come out of it




one thing I will say Nate..turn the music down mate, I wanna hear you ;)

now very sore

As the swelling under my chin and on my jaw is being reduced, whats being left has been revealed to be quite tender. The last couple of days I have had a measurable increase in pain levels on my face, some internal swelling and my tongue also feels a bit bruised at the back. Scar tissue is aching, perhaps because of the bio oil I have started to use on it to help with suppleness.

Yesterdays session was a little shorter as I was late, and she didn't get into it with as much gusto as before so overall not bad.

Today my neck feels tight around the scar and I have to keep streatching it, and my face is sore....

oh well...

whimper

ok, I am a man, a big strong man, and my physio is a small older lady......and she nearly made me cry today...ouch...just ouch, that was bloody painful...But yes, it is effective the swelling is reducing after each visit and my "double chin" is more fatty and soft than hard swelling again, as it should be.

I am however wearing a rather large elastoplast finger thing on my neck today to keep my skin stretched and supple...its not as discrete as the small strips and people are looking at me very concerend that I may have had more surgery or something...ah well...lets see how it goes.

I'm sure she has shares in some cosmetic company too, as she is still wanting me to use some moisturising products for my "dry" skin...hmmm we'll we'll see. Next visit on Friday...maybe I'll get drunk before I go to ease the pain 1st?

aaahhhhhhhggghhh

Straight into the pain today, jaw is still tingling and sticky strips firmly attached to the neck are itchy. There is a distinct improvement though, the "lump" under my chin is now considerably reduced and I can almost feel my neck glands again when I squeeze...so unpleasent as it is..(its not intolorable but no one likes being hurt) it is having a positive effect..

Not having any impact on feeling in my lip or teeth though, and indeed I have noticed my tongue becoming more numb as the sessions have progressed, so much so that I am having a little more trouble controling my "lisp" which is noticible to me but others say I am fine..Perhaps its more the effort involved in trying to say particular words with forces my tongue and mouth to work harder which makes me aware of the odd sensation of saying particular words. We'll have to see, people are not asking me to repeat things (at least no more than my scottish accent normally causes confusion) so I guess I am still coherent most of the time ;)

physio and sticky plasters

I missed Fridays appointment, overslept, but re-booked for today. My face has been feeling qutie tight and stiff as a result of the massage, my physio says she feels nothing bad so its just the fluid shifting around the face thats doing that...oh well, more pummeling to move it away from my face is required.

As always the neck and shoulder part to stimulate the working lymph nodes is all
quite nice and relaxing then we get to the sore bit....ah well..ouch.

I also asked about the funny sticky plasters she gave me last time which I tried to apply myself but didn't quite see the point and she applied a couple to show me, they are bascially to try to keep the scar tissue stretched and supple, since that is causing a few issues. I've not got round to buying any products yet to help with that, I'll look into it.

The growing gums around my wisdom tooth is getting all ikky, its hard to clean around the floppy nodules that are growing down around the tooth. I was expecting to hear about an extraction date but nothing so far...maybe it went to the old address...might we wise to chase up.

Physio 6

After the short vacation its back to the kneading and pummeling...quite painful today it has to be said but certainly shrinkage of the swelling is noticable.

I've been given some sticky tape plaster things to help stretch the scar, but tbh I dunno how to use them, so will have to ask her to demonstrate on Friday.

I need to use "products" on my skin and on the scar to soften it all up a bit...off to the beauty parlour then!!

Physio 5

Quite painful massage, clearly working a lot deeper into the tissue but I have to say there is now a noticible improvement in the swelling under my jaw/chin which is reduced and much softer. Though from the massage it is still painful and probably going to be more so tomorrow.

I also had to do a bit of vibroblade work on my shoulder which highlighted some still quite serious weakness in my right arm especially the shoulder from the back..These muscles wasted a little after surgery and though they are getting stronger with use, its odd having most of my upperbody strength now located in my left side rather than my normal right. Its not a worry though it will come back up to normal with everyday excercise and use.

I get a week off from the sadism now, since its the Autumn holidays here in The Netherlands.

Physio 4

same as before, just like a deep reasonably relaxing facial with bits of pain thrown in to appeal to the masochists.

Day after though my face really hurts and is very tender. Not sure if I can see much difference but it does feel different, though not always in a good way.

Physio 3

Forgot to put an entry up after Thursdays' session. Nothing much to say, I think the swelling is getting softer and reducing but its very hard to say...am finding the process quite relaxing now, except when a tender bit gets pressed, despite my dislike of neck touching, the physio manages to avoid any direct contact with my throat and works mostly under my chin and on the jawline to remove the oedema.

She took some pics of my jaw and neck on the 2nd session, I forgot to mention, so I guess we will be able to compare at some point to see if there is much difference.

Something is definitly happening though, the twinges have been returning and the side of my face "feels" a little different especially for an hour or 2 after the session.

Next one is on Tuesday.

Physio 2

Very early morning yesterday...process is quite relaxing, a bit like an intense facial, some pain on tender areas but the physio is quite gentle.
Today my face is a bit more tender though, and stiff. The swelling area is softer though and loosening up...just keep it going and see what happens...next appt Friday 8-30...

Physio..1

Had my 1st session yesterday. Was a little uncomfortable at 1st but overall it was not as bad as I expected..basically some gentle massage to "activate" my existing lymph nodes and then some manipulation of the fluid mass on the jaw and under chin. A little bit of discomfort on the painful bits of the scar but actually not unpleasant once the initial soreness is worked away.

I have to have a few sessions ever couple of days to get the best effect. It does seem to have softened things a bit, we'll see how much in a week or 2.

I also have to do some neck and face oooohh ahhhh eeeee oooooh type stretching exercises :D

hot stuff

I had some jalapeno's today...with Nacho's
they burned ...but not as much as before, I think I might be getting my tolorance for hot spicey food back at last ;)



very happy.

1st Checkup

And everything seems to be fine. Though I have to have a bit of work done.

The hole in my top gum around my wisdom tooth is the tissue swelling healing and changing to suit the new conditions in my mouth. Unfortunaly its growing over the wisdom tooth and thats not good, since it is not being cleaned properly...so its gotta come out to prevent later issues. Not a problem really since it never fully erupted and it'll never have a mate to chew against (I had my lower wisdom's removed years ago).

So..an extraction is being planned. gulp.

More immediatly the oedema on my neck needs to be worked on, so they are sorting out an appointment with a physiotherapist who specialises in head and neck massage....not going to enjoy that, due to my previously mentioned dislike of neck touching. But needs must. It may help the nerve damage to my lip so it has to be tried, as I'd like to get my pucker back ;)

Once thats done, which should only be a few sessions I then need to see another physio to work on my mouth opening which according to Drs van Gemert is not bad, but can be improved.

And thats it, no pricks, prods, scans, needles or xrays, just a quick peek inside to check all's well and move on to sorting the swelling out.

Reconstruction in the form of a couple of implants can't take place till 6 months after radio therapy but its on the cards...apparently its up to me if I want to do it.
I think so, I'm coping ok with chewing on 1 side, but it would be nice not to have a big hole in one side of my mouth.

Next checkup on 3rd December...I'll fill you in on physio and extraction details as they come through.

It's Friday again....ermm +1

My Mum told me off last night for not updating this blog..she said she was getting worried??

No need to be worried mum I was just busy yesterday and there's not a lot to report.

I was supposed to have an RT follow up yesterday but work schedules and transport issues forced me to cancel it. Everything is fine though apart from the oedema under my chin which I was told about and probably need some massage to help reduce..but I'm one of these odd people who hates having his neck/throat touched so I will pass on the massage and continue doing it myself.

There really is nothing much to report, I am gaining in fitness, weight is levelling out nicely, I've lost my paunch and my moobs much to other people's amusement.
I've been playing pool with collegues as a means to gently stretch and excercise my neck and shoulder and overall I am feeling tip top, except in the morning when it takes a wee bit of time to loosen up.

The only long lasting issue I am having is my total inability to eat any kind of spicey food. Even the remotest sense of a chillie has my mouth screaming at me...shame. I keep trying but nope...avoid spice at all costs.

I have a full cancer status appointment with the surgeon on the 28th and we can see what happens next. Hopefully we can discuss some repairs to my jaw.

Probably not going to post much here till then, unless the oedema gets worse or something else crops up.

It's Friday

So it must be time for an update.

This week has been quite busy with students now starting, and I've had to give lectures and working classes most of the week. But all has been well, even in the large lecture hall I was able to make myself heard and was clear enough in my speech, despite being aware from time to time of some slurring of certain words.

I have been really pleased by this. the large hall was a worry for me but I didn't need to worry at all.

Stamina has been increasing constantly, I do still have periods of exhaustion, but only after doing something physical, like a long bike ride or 3 flights of stairs, but I am recovering within a few minutes, unlike last month where such efforts left me for dead for hours.

I'm not taking any painkillers at all now, pretty much have avoided them for 2 weeks, headache or 2 aside. And I'm coping fine. I am still in some pain, especially when opening my mouth or "yawning" (or as close as I can get to a yawn), but its more of an ache and tolorable.

Neck is still a little tight and tender around the scar areas, and feeling is definitly returning slowly. I am trying to massage this to loosen it up and break down the lumpy swelling under my chin, not too successfully yet but the more I do it the better it feels.
This tightness though is probably responsible for my aching shoulders as I tend to hold my head down a little to avoid pulling on my neck, again something I will discuss with the doctor when I see him

Inside mouth is odd, its clearly swollen and a little tender still at the back, efforts to improve my gape are not working, I can't get it open wider than 2 fingers, which does affect my enjoyment of eating if not the actual function. I hope its not going to stay this way, I would love to be able to open my mouth wide enough to fit some various forms of fast food in there withough pulling small bits off with my fingers 1st.

The hole in my gum appears not to be closing and is a possible source of infections so I am making sure when I brush nothing has slipped up there to hide. I have an appointment on the 17th so I'll mention it then.

Overall..I am feeling pretty good. Could do with a 24hr shoulder massuse on call, but aside from that I'm functioning pretty much at normal.

ha!

But Round4 has to go to the cancer, I took a helluva beating and it wins on points.. Round 5 starts when I see the Drs ven Gemert again later this month for my 1st cancer checkup.

updates

Well its the end of a good week at work so I guess its time for an update.

I'm feeling good..not got round to sorting out the gum thing as I have appointments coming up for checkups, but I try to do something.

Might have a very slight infection in there which is swelling up a bit and restricting mouth opening but not badly.

Tiredness and stamina levels are improving all the time, I can do more and recover quicker, not quite 100% yet, maybe 75-80 but certainly improving.

Scar tissue on my neck is twinging a bit, I've been gently rubbing it and the muscles underneath to loosen things up but the skin is still pretty much without feeling and the muscles are tender..Some parts of the scar tissue are quite painful too.

I really wish I could feel my right earlobe...there is some feeling there but not normal, and kinda painful when I pinch my lobe...all a bit odd.

Lip is still not working, there is feeling there but still not control, and it does look a little like my lip is wasting away a little on the right side...hmmm we'll we're see..I am still confident that it will come back, after all I have feeling so the nerve is intact still.
Swelling on my jaw is reducing, just one lumpy tender bit now.

All in all, doing well.

I've got this hole...

apologies to Jasper Carrot...

but I seem to have a hole in my upper right gum right at the back around about the partially erupted wisdom tooth...There are flaps of loose tissue surrounding it and I can, with a bit of effort stick my tongue right up there....I suspect...though could be wrong, that I have had an abscess up there, because a large amount of the pain I experienced on opening my mouth wide is actually at that point on the upper jaw at the back....if it popped or burst then it may well be the reason for this apparent hole.
Strangely its not painful at all when I shove my tongue in there...only when I open wide (a very relative term).....meh!!

Either way it seems to be slightly less painful up there now though still the source of most pain when I stretch my mouth open. I need to go see the Hygienist to get more fluoride gel, so will bring this up. I also want to see if there's anything that will help increase my gape as I am struggling a bit putting enough food in my mouth, which is affecting my enjoyment of food even if the process of chewing it is now easier.

Fitness levels are improving noticeably now, I can actually get up and down the stairs without needing a sit down afterwards. I'm probably only 50% fit, but its better than i have been the last couple of weeks/months. This has meant that I can now get more involved in things around the house and life type stuff..all good.

A good day

Today I went back to work, with little or no real issues with stamina. That may have been partly due to adrenalin and the sheer pleasure of being back with a great team of people but it was as normal as normal can be. I only had a couple of twinges to cope with.

Insomina is still a bit of a problem but hopefully a few early mornings will put an end to that at last.

Painkiller use is right down, I took some paracetamol this morning, but only becuase I had a major headache.

Mouth is a little swollen inside, which may be a cause for concern, it does mean chewing is a litte painful, but I think this is just the muscles finally stretching and tearing a bit due to excercises and ever wider yawns. I managed to eat a sandwich for lunch (discovering in the process that mustard is on the banned list for now)

A good day for sure, nice and normal.

Tired

Since stopping the morphine I've had really bad insomnia, which isn't too much of a downer since I can sleep very late at the moment while we are still off work. But the physical exhaustion I've been experiencing is improving very slowly, it may well be that the insomnia is not helping but its probably just a leftover from the treatment.
I'm still at a stage of being able to do one big effort thing a day, then needing to rest for several hours to recover, not easy in a new home with lots of things to unbox and place in their new homes.

Aches and pains are also much more pronounced...not surprising when you stop taking painkillers. My shoulders in particular, ache like I've been swinging a pick for weeks...Neck pain of course is still there, and the tightness caused by the swelling is a bit restrictive in the mornint, but eases up as the day goes on. Mouth pain itself is still worst, I have a permanent sense of heat in my mouth on the right side, with odd twinges of various levels of pain.
Eating is a game of russian roulette; will it sting or won't it? My mother in law has been making me some lovely Indian food, though without chillies as they clearly are off limits for a while.

And of course yawning is a luxury I've not enjoyed since the original op, I have to suppress it before it gets too wide, because it hurts like hell.....now...think about it...insomnia, tiredness.....no yawning without pain...owww.

My mouth is however starting to open up again, we're nearly at 2 fingers again and I am pushing it open a bit more to try and get a full yawn in eventually.

Some of the swelling in my neck which is still quite tender and is giving me a bit of discomfort..Its causing my throat to push in a bit with acts like an irritation inside at teh back of my throat and causes some occasional coughing fits. But that swelling is starting to soften a bit and I am massaging it as best I can, without triggering a cough.

Ah well. Gotta keep going. I think coming off morphine was still the right thing, even if I'm functionally taking a step back, I am sure with a bit of rest and recuperation I will be taking a few steps forward soon.

last regular checkup

Todays double appointments with the dietician and doc went ahead fairly straightforwardly. My weight and muscle strength are still perfectly stable and all is well.

Inside my mouth is clear of infection and now we just need to give it a week or 2 more to heal and all will be fine.
I still have to avoid hot spicy food and acidic drinks for a while and strong alcohol...which I can understand as a shot of strong vodka at a party last night was a bit similar to having alcohol poured on a wound.

Thats the end of the RT treatment...I do have a follow up next month just to make sure all is healed well, and maybe an appointment or 2 for neck massage to prevent edema. I could have had that today, but my neck is all still sore and tender since it was not fully healed before starting the RT so I am going to wait a bit.

An interesting thing though. I stopped taking the morphine, partly so I could have a drink at the afore mentioned party but also because I think its been long enough. Sure enough I managed well without it. Some pain for sure, but thats really to be expected, nothing like the mid RT pain that forced me on the morphine in the 1st place..But what was interesting is I had quite distinct withdrawal symptoms last night and all through the night, sweats, cramps, joint pain, psychedelic flashing, a fair old sample of the documented range, which, though mild by real opiate user standards, proved to me that it was time to come off while I still can. I think another week of Oxycontin use could have been a bad thing...Today I feel rough...tired and my joints still ache, still getting stomach cramps and upset tummy while feeling a bit twitchy, but I'm not going to take any more.
It may well be all in my head...but regardless its a problem that needs to be resolved.

I got a new box of Paracetamol to supplement my Ibuprofen and I'll use them for a week or so then ease up on them too....time to get the drugs out of my system, even the non addictive ones.

No more morphine

I prefer alcohol :D

Am going to try and stop the painkillers now, at least the strong ones. My mouth is still a little raw and feels it, but there's no more constant nagging pain and my tongue has healed up quite a bit. I did try to have one of my mum-in-laws delicious curry's yesterday but it was just too hot for me, and I had to go douse my mouth in lidocaine to ease the quite genuine pain it caused.

Which is sad as I am an avid curry eater and even though mum-in-law is Indian she can't make my curries hot enough for me. I guess I will have to re-build my tolorance to hot spicey food.

It'll be another week or so before I can say its all better but I want to drop the morphine now as it leaves me feeling a bit slow and easy confused plus I think my tolerance to it has built up making it less effective. I'll continue with paracetamol and Ibuprofen if needed but for the moment I am not taking any more Oxycontin.

Stamina levels are still quite low, but slowly improving I need to excercise a bit more, so will be renewing my interest in Golf in a week or 2.



Checkup tomorrow, will update then.

bit better

Definite improvement in the mouth pain today, still tender and I'm not going to go temping fate with a crusty baguette, but I have been able to east a decent amount today and not be in agony when the food makes contact with my sore side. Even managed a couple of teeth brushing sessions with tolerable pain levels.

I managed to stick to 5 mg of Oxycontin rather than 10, so am happy with that. Might try to just use normal painkillers tomorrow.

Fatigue is still an issue, though I managed to do some DIY jobs around the place today, that running on empty feeling stopped me in my tracks for several hours. But overall, a better day than yesterday.

small update

Physical exhaustion is quite bad, not just tiredness you can sleep off, but the feeling that just lifting your arm is an effort...I'm actually supporting my arms on my chair arms to type this.

I seem to be able to do 1 effort requiring thing a day, after which I really am useless, today we carried some Garden furniture from the nearby store to our back garden, and while I was quite able to do it at the time, I've been recovering from it all day and only a good nights sleep will give me back some gas in the tank.

Mouth pain is still very bad, and has finally put a stop to my eating, contact with the sore side is simply to much,even on a full dose of morphine. So I have been sticking to things I can keep on 1 side of my mouth, or in the case of chocolate suck till it dissolved. Even water stings at this point.

I am hoping the doctors prediction of this easing up after the weekend is true.

I'll let you know.

1st followup

Kinda pointless, and annoyingly they were running late. Bina had decided to come with me this time and we both ended up waiting ages to be seen.
Dietician had nothing new to say, weight is stable and strength meters still good.

Was then taken upstairs to see Dr Oie, waited over half and hour, before being asked to wait in a room with a very imposing endescope whirring away.

Fortunately Dr Oie just had a quick nosey in my mouth using some tongue depressors rather than the endescope and that was it. He did say this week would be the most painful around the irradiated areas, and I can believe that..since I wasn't even able to eat a plate of mince and tatties the other night due to the pain. But he expects it to get better by the end of the weekend. So at least there is an end to it.

I dropped my Oxcontin dose the last few days but I might up it again at least till the weekend to make me a bit more tolerable to other people as I am aware of constant bear with a sore head grumpiness.

Have to repeat the process next week, lets hope they are not as tardy then, or the bear might growl.

4 Days later

Just thought I'd put up a small update. Its now been 4 days since I had any radiation so we can assume things are starting to heal now.

Aside from pain, the most noticiable issue is my ability to open my mouth is very restricted. There's a lot of swollen tissue at the back of my mouth which is acting like a spring preventing me opening more than a fingers width. I think its a little better today, and hope it will improve daily.

Inside my mouth I am still quite tender and raw, my tongue in particular which has been the main source of the pain the last few weeks is still tempremental and a little swollen at the back. Which stops me having full use of it to clean my mouth out when I am eating anything sticky. Also some speech sounds are extremely hard to make, so I am not really sounding myself at the moment, but as always I think gestures and mime help to get most points accross.

But the sores do seem to be reducing in size and causing less direct contact pain, though the candida spots appear to be stubbornly refusing to budge despite the more powerful meds.

Constipation is still a problem, but I have been "going" without meds, even though it takes a few days, so I'm not going to worry about it. I think I have enough meds to chug down in the morning without the updated syrup of figs.

I have been warned to watch out for spells of tiredness and I think I understand now what they mean, despite several very good nights sleep and long lie in's, I have found that I still feel physically exhausted a lot of the time, especially after walking the dog or other light excercise (or DIY)..Not quite bed ridden but distrubing in a way that I need to stop and sit a lot more than I am used to.

I was taking 10mg of Oxcontin 2x a day at the peak of the pain, and its tempting to keep on that level, but I am going to try to reduce that back to 5mg again and see how it goes. I'm also supplimenting that and hope to replace it with Ibuprofen and Paracetamol.
Addiction to Oxycontin remains a worry for me, despite assurances that it won't be a problem, I'd rather get off it as soon as I can, and am dropping the dose while I can.

Neck area is a little odd, the area under my chin was swollen after surgery and remains so, but as feeling as returend I have noticed a tightness and a mild pain from the muscles in my neck, I'm attempting to gently rub my neck to loosen the swelling a little and also to sooth the muscles. It all still feels a little delicate to the touch though.

I lost about half my facial hair during the radiation, I have a pic that I'll try to upload. I also lost a little at the back of my head, which came out in a few clumps, but isn't noticable, so I don't think I need to resort to a post chemo head shave look. It should all grow back.




Teeth...seem ok, though one is still loose, and may give in at some later date. I'm trying to keep up with my 3 times a day brushing regime but at times its very painful. Since I can't open my mouth fully, and the foam from the toothpaste can be very sharp on the sores on my gum and tongue.

I also have to do the flouride bath thing every other day which I missed yesterday being unable to open wide enought to put them in. I'll try again later.

Thats it so far..

Sore mouth

Just a quick update, mouth is sore as hell today, so probably not going to be talking much, but otherwise am in good nick, having long lie ins now that I don't have to be up at 7am to go to the clinic.

RT 35 Done!

Taxi was way too early but not to worry I pulled on some trousers and swallowed my pills and headed off. Didn't have to wait too long when I got there, even though i was about 40 mins early. Scouse tech came out and took me in for my last one..Thankfully uneventful, and thats it.

They let me keep the mask, after cutting of the metal fastners which can be reused. And I gave Scouse tech a hug for all her help, then went off to see the doc.

Got some better drugs for the oral candida, more lidocaine and thats it. I still have to have weekly controle meetings for the next couple of weeks, to make sure the after effects are under control and to give me diet suppliments or drugs as needed but thats it! I'm done.

I feel quite battered and beat up, and very tired and sore but very very pleased its finally over.


Time to heal and let things settle down to normal.

RT 34......1 to go...just 1. phew.

Penultimate one done, taxi arrived ok this time and got there no problem. Machine broke down again on last part of the zap but was quickly fixed and done.
Scouse tech again was commenting on how well I am holding up and looking after such a long course of treatment. No burns, no major weight loss etc. But the tongue thing is still a problem, going to try get a pic of that today if I can get stoned enough to not feel the pain when I stick it out :D

Scouse tech also warned me to be in no rush to return to work in 3 weeks as I may well have effects from the treatment lating for 4 or more weeks. Mainly tiredness, but I am sure I can cope with that, so long as my tongue is working and I am able to talk I can give lectures. Its not as if they actually make me do any physical work :D

Dietician appointment also went ok, I have lost a bit more weight this week, which I was expecting due to the increase in mouth pain and inability to eat large chunks of food. But overall still well within the limits. Amazingly, my muscle strength is still improving. I assume its all the excercise we've been doing for packing and hauling for the move. Either way..its all good news as far as my body is concerend.

Looking forward to the last one tomorrow, then chillin' for a few weeks. I still have to do some controle appointments in Tilburg for a couple of weeks until the RT effects have worn off, but at least there's no more daily disruption in my life next week.

I had my 1st real experience of what going without morphine would be like since I took my dose early yesterday and didn't take any in the evening. As a result of a late night and a long sleep till 12ish today, I basically woke up with no painkillers in my system, they had worn off.

I.
Never.
Want.
To.
Do.
That.
AGAIN.

With the morphine, my mouth and tongue is sore, without it, I have a prety fair idea of what its like to walk around with a red hot poker in your mouth. Soon as I woke up I ran to the bathroom to douse my mouth with lidocaine then get some drugs in me before that wore off.
A combination of 1 blue (no its not viagra), 1 red, 2 white and 1 red and white pills was hastily swalloed and 15mins later I was able to deal with it a bit better.
Roll on tomorrow...or rather roll on 8pm when I can take more morphine ;)

rt33 2 to go

Taxi issues were eventually resolved and I was taken in a minibus and back..Seems my taxi did come at 7-40 but I must have been in the shower and missed him. We didn't hear the bell, so perhaps we need to invest in a better one.

When we did get to the clinic though I had a long wait as the machines, or rather the computers that control the machines had broken down, and quite a queue built up before I was called in.

Seems they had tried to call me to find out where I was and had not got my message that I was held up again...no worries I left my mobile number for them.

Depite double doses of morphine I am in mega pain still, my tongue and jaw are screaming at me and there seems to be little relief. I am tired as hell from the lack of sleep last night though so I going to try to stay awake today and get an early and hopefully long sleep tonight.

Was sad to hear that the taxi company who have been driving me are closing down. I was chatting with my driver yesterday (the one I missed this morning) who was telling me he was due to have his contract renewal interview yesterday and he was hopful he would get his permanant contract after 2 years of 1 year contracts..Sadly he was told he and all the others were being laid off in Sept. Quite a blow for him and the others who by and large have been nice to spend time with. I hope they all get new jobs soon. At least Taxi drivers are always in demand...just not for companies that specialise in transporting hospital patients.

Bahhh

More taxi issues, not sure if they never showed up or if they came too early when I was still in the shower, but either way have missed todays appointment. I have called in and told the clinic. I am waiting to hear from the cab company what the problem was/is and if they can't supply another cab I'll walk down to the train station and make my own way in.

Feeling very rough today, was doing a lot of talking last night and it really killed my tongue, even double doses of morphine are not having much impact on the pain levels today. So been using lidocaine to ease it and am not talking today if I can avoid it.

Bizzarly, despite the double dose of Oxycontin, I could not sleep last night, and in total have only had about 10 mins snooze, no where near enough, I'll have to have a few hours nap when I finally get back from the appointment and try to regulate my hours.

Don't want to miss this appointment, just because we're so close to the end and Friday is the big day, I won't risk having that postponed to Monday just to make sure I get the full 35 fractions.

3 more..just 3 more I can hold out for that, not sure there's going to be much left of my tongue after 3 more but it can heal after Friday.

RT32 3 to go

After the drama of yesterday it was a relief to have a totally uneventful drive to Tilburg for todays zapping which was equally uneventful.

Only issue with the early morning ones is having to get up very early to get ready which of course increases the tiredness when I return, but at least I have the day to myself now.

Pain levels are still quite high, have taken a single dose of my Oxycontin this morning, since I had one before bed at 1am, and it won't have worn off yet, but planning a double dose tonight around 6. I also need to pick up some more lidocaine to help with the tongue problems which are the main source of pain.

Eating is also becoming more difficult, as I can only open my mouth a couple of cm now, just enough to get a fork in :(. But spag bol and other reasonable softish/small foods are going in and so long as I don't have to chew too hard swallowing is still not a problem. Also is just as well I like pea and ham soup :D

3 days to go...so close now just want to limp over the finish line, dope myself up on the morphine for a week and veg out.

RT31 4 to go

Well, karma is not on my side today... The Taxi didn't turn up, it seems they made an error checking it in, and when I tried to call to sort it out, they used a premium rate number which very quickly used up all my credits and left me scrambling to arrange a new taxi.

Fortunatly the verbeeten are used to such things, so long as you call to let them know you will be late they juggle things around.

Eventually the taxi firm sorted out another taxi firm to come collect me and I was taken there on the meter...wow. 54 euros each way, and he actually forgot to include the waiting time...so probably around 110euros normally. Fortunaly, though they did at 1st ask me to pay and claim back, they managed to arrange for the normal taxi firm to be billed for the amount.

Once I actually got there, I was straight in and RT31 was uneventful....4 left. Lets hope the side effects won't get much worse, but I am going to give some serious thought to doubling the morphine as my tongue is just agony still.
we'll see how I manage after food.

Agony

Well so much for thinking that I had got through the worst of the side effects, this weekend my mouth has been agony, just absolute agony, feels like I have an infection in my jaw at the back, though its more likely to just be radiation induced swelling and soreness.

Aside from pain it has a big impact on my eating ability as my mouth is opening less and less each day. I have been doing my stretching exercise with my finger and thumb to push it open further, but man....oh it does hurt. But..I am still eating, soft foods at least, and after a short period of constipation, I took the meds with the required result a few hours later...so my insides are least are coping.

Also had a few times of waking up screaming in pain as my tongue was either bitten or dragged along my teeth in my sleep. The nasty sore on there is getting bigger after a brief period of healing and is very painful, reaching up to the top of my tongue now. I may have to consider doubling my morphine dose as per the doctors suggestion if this gets beyond tolorable.

Last week of RT this week, and I'll be heading off for todays dose a little later. In the meantime am keeping busy as best I can with the house move/organising rooms, doing what I can before tiredness kicks in.

I must admit I was pleased by how much I was able to do on the actual move day, loading and unloading all day keeping up with our friends, who were helping us move. But next day I was like a wet sack of sand....Mind you, I would have felt that way even before the cancer after shifting so much of our accumulated crap :D

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.

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.

RT 28 ...7 more to go

Argghh...

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.

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.

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.

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.

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

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!!!

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.

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.

Mum and Auntie Ann

Hello.

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.

If you don't have a google account or a blog elsewhere just tick anonymous , then the publish your comment box, and the comment will get sent to me to be moderated.

There now....is that so hard?

;)

RT21

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.

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 cool...it 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 warned....it is MEGA painful

that is all.

oww

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 www.caphosol.co.uk 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 wonder..so 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.

RT20

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.

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 spicey..it 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.

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)

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 that...am 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 BBQ...wine tastes terrible..but cider was very refreshing, though it did sting a bit. I know I'm not supposed to drink but bahhhh..

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.

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.

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.

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 beard.....it better come back when this is all done!!!

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.

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.

ugg

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 pain...so far its just about working.

RT12

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.

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 some...so 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 painful....so more Caphosol before bedtime and we'll see how things are tomorrow.

Swallowing is starting to get a little more tricky though..it 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 edgewise...plus 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 ;)