Cancer Timelines

Quarterly checkups

2012-01-27T03:20:00.000-08:00

Not been a lot of cancer related stuff to report, which is of course the best thing, in an ideal world I should not have to ever update this blog again, but I do of course still have to do the quarterly checkups..

And thats the subject of todays blog...it was fast, I'll say that, bit of a feel around, check inside, a few questions about health. Done! I again asked about the scar mass in my neck that is still tender and can feel lumpy, but was again told its just due to there being no fat in my neck so all the muscle tissues and scar tissue are more evident.

Also he pointed out that as we approach the 2 year mark, we are moving out of the danger zones, 1st year being most likly to have problems, less in 2nd year and odds improving continually. So that is indeed nice to hear.

Nothing to report then, all clear for another 3 months.
So forgive me reader if I say I hope to not post anything more, other than useful info/tips for another 3 months or so.

Next one is in May. speak then.

oops forgot.

2011-11-27T06:03:00.000-08:00

sorry, forgot to update

yes mouth was sore for a few more days and I was on the point of calling the doc, but it started to heal...now all good again. Back to normal discomfort and inability to yawn.....sigh!

hmm

2011-11-21T02:04:00.001-08:00

getting close to booking a doctors visit...in pain, not getting better...don't think its serious but it is causing me to drool and lisp a bit more than normal....give it a few more days.

ouch

2011-11-19T09:17:00.000-08:00

ok I know its a common theme but just reporting the status.

mounth is sore after yawning, and attempting to open wide...side of my face is a bit sore and tender and I'm slurring a bit as a result...hmm

also had a nice glass of scotch last night and my mouth felt like a raw sore when the booze touched it....

damn I have no pleasure.

fine again

2011-11-10T04:15:00.000-08:00

yes the sore mouth healed up as expected, I can now open fully again, still not quite at the yawn click phase but it feels so close (yawning as I type this to confirm).

Really not much to report, am in overall good health, couple of sore spots on my neck that I need to massage and the usual tightness. Nothing new or out of the ordinary....sad when discomfort and mild pain are considered ordinary..but you know what I mean.

onward and upward as they say (who...I mean really who actually says that???)

Yawning...has consequences

2011-10-31T17:33:00.000-07:00

I was ever so close...just that tiny fraction away from a couple of proper yawns last week...But they hurt...and it seems I've done some damage...which has resulted in more swelling and pain in my jaw, and we're back to the old days of restricted 2-3 finger opening, and pain...rather a lot of it.

Its nothing to worry about really, I stretched the muscles a bit too far going for the yawns and tore some fibres, and now I have to wait for things to heal again but it means I'm back to doing my finger and thumb push ups on my teeth to stop things siezing up. Worse still is not being able to eat cleanly again...food keeps banging on my teeth and falling of the fork...bahh.

As usual, I'll give it a week or so to settle down and if no improvement will go see the doc.

One new thing...my tongue...does not feel quite so numb down the edge as it has done...its not that I have regained feeling as such..just that the actual sensation is different, like I'm no longer aware of the numbness...hard to explain really.. This may also be why I've noticed a slightly more pronounced speech defect in my voice when I am recording my terrible singing, certain sounds are just not coming through as clearly as previous recordings and I sound like I have something in my mouth when talking/singing...its subtle but I have noticed it.
Something to keep an eye on...or an ear!!

all fine

2011-10-14T05:32:00.000-07:00

lumps and bumps are nothing to worry about, I just have less flesh and fatty tissue on my neck so I feel things more sharply that you would expect.

check up in 3 months.

Appointment

2011-10-06T16:33:00.000-07:00

Appointment booked for 14th Oct.

Just as a small note, prothesis is becomeing much more wearable, can keep it in for hours at a time now though eating does cause some cleaning problems..it does have 1 huge huge bonus, I'm sorry I ever doubted it.

When in place, the prothesis covers up the very ternder new "gum" area which can't abide chillies.....I can eat curry again ;) (so long as no sauce slips under :o)

Sooooo happy.

too damn quiet and worrying developments.

2011-10-03T15:05:00.000-07:00

Ok nothing heard from the docs, since my last checkup. I missed my last appointment by accident and have been expecting to have a new appointment sent to continue checks, so far nothing...and now I'm a bit worried.

A lot of the swelling and fluid that surrounded my surgical site has eased away in the last couple of months, which is good. But its also allowed me to feel about a bit at my neck. Now granted it won't feel the same on the bad side as it does on the good site due to lots of missing fat and flesh an a couple of still tender spots, but it does appear to be quite bumpy there..How much of this is scar tissue and how much is natural bumps I don't know but given the nature of these things, bumps are a bit of a worry.

Also in the last week or so, my neck has been feeling quite uncomfortable and tight around the scar..no issues with eating swallowing or anything just a sense of discomfort and tightness....and today that discomfort has turned to very very mild pain...
I emphasise very mild but still..pain isn't good.

Have booked an appointment with Drs van Gemert via the online appointment system they have here, so hopefully will see him inside the week.

I must admit a very slight trepidation at the moment, I hope its nothing of course...
hmmm what to put...yes scared and worried..but its probably nothing at all...but posting here for posterity and the usual record keeping..

oh...before you get all worried mum...its almost certainly nothing at all, more likly a scar tissue problem so lets not get all moody and stressy...See what the doc says 1st.

I will keep you posted.

Quiet!!

2011-09-12T13:35:00.000-07:00

Not much happening at the moment, my last dentist appointment was a quick in an out to check that the prothesis isn't rubbing or causing too much pain.

Its not, though I have realised eating with it and wearing it for too long are no no's. But the dentist says I should stick with it. He does not want to see me for a year now so that side of things is over.

Now that I've had it a week or so though I am starting to question its worth..apart from the bit about stopping my upper teeth from falling out in time it does not really add much.

hmmm anyway..am going to book a checkup, since I missed my last one, and they have a funny habit here of dropping you when you don't book followups at appointments. So that I can get my regular 3month checks done...

thats all for now!

Lotta metal

2011-09-05T05:26:00.001-07:00

voila...the new teeth

Big chunka metal and artificial gum there. Also I should point out thos sharp looking points, are indeed sharp and I've pricked my lip/tongue a few times putting them in and taking them out.

tbh, I am finding the benefits hard to quantify, yes I can eat with it on my right side for the 1st time since my surgery, but nothing too hard, and after an hour or 2 it does start to feel a little uncomfortable. But I am trying to persevere and overcome that.

Eating with it in though is much more trouble than its worth, eating anything with it in means you need to go remove it and then brush your teeth....so probably best to just remove it before eating.

Anyway...will keep going with it for now. My mouth still feels all strange and odd with its new teeth in place.

The implant is a fantastic success as I can now eat any kind of crunchy food, something I was unable to do before, but like the implant, I often find I must brush/pick/floss immediatly after....We'll have to see if this is going to be a constant, or just a bedding in process.

New Teeth

2011-09-01T03:12:00.000-07:00

Back from the dentist. My implant is in and feels ok, though perhaps its a tiny bit high so might need leveling on the next visit. At the moment I'm just getting used to biting down and I have to wait till my jaw muscles settle into a new pattern. It was screwed in pretty tight, then the screwhole plugged up with filler, it looks totally natural.

But more impressive, the prothesis on my right side is also in place and I have teeth again. A fact my tongue seems a bit put out about after having all that space to itself again.

It feels extremly odd, I have to say. The 1st thing I did when I got out of the dentist office was pop over to the hospital canteen to try some food. I only risked a sausage roll (This is Holland, there wasn't much more choice) but yeah, it was ok, I could chew on both sides, no discomfort, though as I said it does feel a bit odd. I wonder how it will cope with a nice steak!!

One thing though my tongue can't get up and over the prosthesis to clean the cheek pouch when and after eating, my tongue is weak/numb on that side so it seems to have problems. So I need to either practice that so my tongue regains that function, or make a point of cleaning after eating pretty much anything.

The thing is locked onto my remaining right and rear left side teeth with a bar under my front teeth. It all feels quite strange, and it also has front steel/tungsten/shiny whatever metal, at the front, so I have a distinct Jaw's from Bond look on that side..But since I can't smile on my bottom right that will never be seen.

I have never had dentures, so I am wonderng if this is how people feel when they have them fitted, like they have a gum shield in place.

Talking is very slightly altered too, I think its the toungue being pushed back into its normal place again and the area the tip of my tongue being slightly different,gives me a very slight lisp again...should sort itself out.

I'll post pics soon.

A bit of creative writing

2011-08-18T16:11:00.000-07:00

Every morning, I wake up...I yawn, it hurts. I have not had a proper full blown jaw cracking yawn for nearly 18months. I miss that, it might happen in time, I hope so even though I suspect it'll bloody hurt.

My saliva glands don't operate at full capacity any more, so I always wake up with my mouth bone dry, sometimes my tongue and lips are cracked, that hurts. I focus on getting the juices flowing to get my mouth wet and working again.

I check to see if I bit my tongue in my sleep because I won't have felt it, if so, I might be lisping and spitting at people today...last week or so has been pretty clear, no one got wet.

I feel for the scars on my neck which have swollen and stiffened while I was asleep, and have stuck to the muscle/fatty tissue I have left on my neck, the skin needs to be moved around a bit to free up my neck.

I try to painfully massage the swelling down to loosen my jaw, and get freaked out by the fact rubbing my neck makes my earlobe tickle, no really rubbing my neck makes my earlobe tickle. I can't feel my earlobe any other way.

I rub my chin, to feel the bald patches where my beard used to be, The radiation treatments they used to finish off my cancer cost me a much loved furry facial pet. Only one 1 side though, so I now have to shave every day..I hate shaving...thats why I had a beard. Now I have no choice..a half bearded fat bloke would scare the kiddies.

I do this routine every morning, as I wake up, a constant reminder of what Cancer took from me and gave me in return. As I do this, I realise once again the 50-50 chance I have of making it through the next 4 years till my all clear, is still in my favour.....yeah for statistics. Thats a good day, I savour those days.

On my dark days, and there are a few, those odds worry me. Sometimes the worry overwhelms me, and my mood crashes like a stone and I want to change everything or run away or ignore it or just sulk and let the pain win and give up, hurting others as I wallow in my own self pity.
Fortunately...they have drugs for that!!! yeahhh for drugs.
Time works too, with help.
But yeahhhh for life. 1 year down, 4 to go, then an all clear...maybe, I don't really keep count.

Its good to be alive, even with the odd hassle, the pain is pathetically minor compared to what so many other suffer, to what others have lost. I have no cause for complaints..When people ask me, "Hows life..", I say. "Better than the alternative". They think I'm joking. I'm not. But I smile...a crooked smile, at the fact they chuckle, a crooked smile is every bit as effective as the smile I used to have

I am alive...or at least I will be when I get some coffee!!

I owe all this to a surgeons skill and the care and attention of many dedicated medical people. Not a bloody guilt trip Facebook status update put up for an hour.

Cutting and pasting what your mate put up becuase his mate put it up becuase her mate put it up, and you don't want to be seen to be uncaring as the post suggests.

A cut and post job, won't change a thing. I don't care if you know who your real friends are, I don't care if you know the ones who will post it..I don't care if you have people you know affected by it, don't post it because someone else did, I won't. I'll post messages to remember people, I'll post messages to encourage people I'll post messages to warn people, but I won't post your chain messages.

I don't need to to paste text to let people know that cancer exists, my friends see it in my smile, my family see it in my eyes on my bad days, I see it when I have to bloody shave half a beard and I feel it when I want to finish a yawn.

Please....stop doing it!!! Send 1 hours wages to cancer research...it'll actually be a good use of your hour

Ermmm you can re-post this if you like!!! no guilt, but I know the people who will ;)

Cancelled

2011-07-24T10:03:00.000-07:00

My dentist appointment got cancelled last week, my non english speaking angry dental assistant called me to let me know the appointment was cancelled.I understood Geen Afsprek Donderdag (no appointment on Thursday) but the rest left me mystified, going to have to pop in and see when the next appointment is.

Cavities....

2011-07-14T13:23:00.000-07:00

I didn't realise dentists give you cavities as well as fill them :)

I have had a couple of holes drilled into my teeth to hold my new plate, odd sensation having a drill working without anisthetic!

There was also some more imprints taken using much stronger rubber based compounds that were a nightmare pull out.

Annoyingly I got a telling off for not brushing teeth well enough...twice a day and after sticky meals....grrr what more can do?

Next week, I think I get my implant crownso that'll be an interesting day.

still in pain

2011-07-10T11:57:00.000-07:00

Started my dental stuff with a fairly standard impression being taken, nothing to write home about on that. I have 6 or 7 more appointments over the next 2 months to make a plate to sit where my jaw used to be, and to provide a crown for the implant stud.

I'm still in pain thougha couple of "big yawns" caused some tearing in my jaw muscles and depending on how many follow up yawns occur, my jaw can be quite sore. At the moment it does ache a bit and its meant I am back to a 2 finger insert...but it should clear up.

I'll update you as and when anything ineresting happens.

Pain....

2011-06-21T19:05:00.000-07:00

Well I think I finally managed that full yawn a couple of times this week. But in the process I have hurt myself so not sure if I quite got the the crack point before it hurt
The muscles at the back of my jaw are now quite tender and a bit stiff, also inside my mouth there is a lot of tenderness and some pain, if I am eating/sneezing or otherwise causing my cheeks to puff...It may be a sign of something worrying but I think its just the muscles reacting to their 1st full stretch in over a year.

I also have noticed a bit more sideways movement of my jaw while mouth is open wide, though not without some discomfort at the extremes, but again...its been a while and those muscles and tendons need a bit of easing in.

I have an appointment next week with the dental staff so will get them to have a proper look when I am staring up their noses, just to make sure.

In the meantime I have a cold and am again finding the numbness at the back of my throat to be a problem as snot drains away at the back but I don't always get the message to swallow..cue occasional coughing fits as I breath rather than swallow.

I have decided not to continue with my physio, mainly becuase of the disruption it causes trying to juggle appointments and work. Also I think we ran out of major benefits some time back. Its pleasent enough and after a few weeks there is a buildup of stiffness but I want to try to sort that myself. I bought a small non sexual vibrator, designed to ease away worry and laughter lines according to the bumph..I'm using that to stimulate the swollen and tight scar areas of my surgical site.

Anyway...better try and get some sleep, colds and coughing fits don't make for easy sleeping but I am now quite tired.

Implants ahoy!

2011-05-25T03:56:00.000-07:00

A month since my last post, shows how little has been happening I guess. My dry mouth in the mornings thing, has not really gone away, and the physio has been on her hols so I've not been subjected to any sadistic face massages for while.

But I did have a procedure yesterday to put an implant in my upper right side to replace a tooth I lost a few years ago due to a dentist mistake, once in place this will aid chewing on my good side.

Implant procedure was strange...a small surgical procedure carried out under a local, but I was all covered up, and had my eyes shieleded under surgical wraps so I could not really see what was going on. No pain at all in the area, though there was a definite thump from something at the back of my throat, I suspect something slipped and fell into my mouth which caused a shock reaction but no one explained what had happened.

Rather a rough tough process too, more like being in a mechanics workship than a dental surgery, lots of cranking of small mouth pinned tools some banging, lots of shoving and worst of all drilling.

Now when I say drilling I don't mean whimpy little bzzzzz bzzz dentist drills, nope, nosirreebob, I mean really bone boring BRRRR BRRRR heavy drills that go up through the jaw area. Several times until the correct size of hole was made.

I was then asked to blow down my nose while it was pinched by the surgeon and amazingly I was breathing through the hole...so I assume the hole goes up into my sinus area...I have no idea if its supposed to or not, but it was a very odd sensation blowing air out of my tooth gap.
Then the rod goes in, more cranking and twisting and shoving, after which a couple of stiches to close up the gum.

Totally painless, aside from the unexplained impact in my throat.
I now have a small metal rod in my jaw which will poke out a little once the swelling goes down. Then in 6 weeks I get a crown fitted to that and I have a new toth.

Once the local wore off it was a little painful, fortunately I was having drinks with my mate Martin then Bina joined me for a meal in town and I happily stayed tipsy the rest of the day, with help from some mild painkillers, I felt nothing.
I had some morphine left from the RT and was ready to use that if needed but it was fine.

Today, the day after my mouth is a bit tender and I need to be careful eating but its not too bad...more alcohol :D

I also had to go see the hospital dentist to book appoinments for the crown, and got a very stern telling off, in Dutch from the receptionist...quite bizzare really, last week I got a phone call from the hospital telling me I had missed an appoinment, and gave me another time (today actually) to come in. But it turned out due to language issues, they were telling me to come in right away and then ....something, something. My dutch is still quite poor.

With help from someone who could translate it seems I had a series of appoinments lined up to sort out the plate on my bad side...trouble is I never actually received notice of these appointments so of course missed the 1st and possibly second one, hence the irate call, and the even more irate receptionist.

I tried to explain that I had not been given notice of these appointments, much buck passing then took place about it and it became apparent they were not willing to accept I had not recieved the appointments.
I gave up...until the dentist himself came out and tried to give me a telling off for missing appointments and wasting his time...That was the last straw, I forcefully...well with numb lips, as forcefully as I could, told him I never got the appointments, so can't be held responsible for missing them...only to again hear the receptionist get annoyed because they had called me to remind me....cross puposes again..

The basic issue is that I never got the appoinment card, so ......everything after was basic miscommunication, and indeed I have no appointment today after all so I have no idea what the hell was going on.

Anyway, I now have 6 fresh new appoinments, on a card...which I will happily keep.
Lets just hope thats the end of that particularl hassle and the dentist does not take it out on me by forgetting to give me a full dose of local when he's messing about with my teeth.

1 down 4 to go.

2011-04-27T04:46:00.000-07:00

1 year since the op.

It really does seem like a lot longer to me when I think back, but no its a year...I have 4 more to go before I get an all clear and a few minor procedures to fix things ahead of me.

I suppose now's a good time for an update?

Mouth opening has improved considerably, yawning is gettign wider and wider. I still have some swelling under my jaw that is a little tender at times, but overall not bad. A few more months of physio then I think I'll knock that on the head.

Still can't eat hot spicey or strong mint flavours but pretty much anything else is ok.
Right side of my bottom lip is still paralysed though I have feeling, generally though aside from a lop sided crooked smile, occasionally slurred speech and a few random spits on people, its not causing too any issues.
Right edge of my tongue is also a little numb most of the time but its quite usable :D My sense of taste is quite normal.

My beard has not come back following its loss due to the radiation, I think thats probably going to be permenant. :(

Some tightness of the scar from time to time but thats not so bad.

Overall..1 year on, I'm pretty much fully recovered from the surgery and its other effects. Getting on with life and still moving forward.

Roll on the next 4 years.

all good

2011-04-26T23:25:00.001-07:00

After my quick check up with Dr van Gemert, it seems my glands are working fine, producing saliva and may just be a bit irritated by oedema or something, nothing to worry about, I need to chew gum and eat more citrus to stimulate the saliva glands a bit more.

Paranoia after all, but well founded, he agreed that if anything changes its best to get checked out before it escalates..

Paranoia is good sometimes

2011-04-16T01:08:00.000-07:00

I've noticed something different, not being the hypochondriac type I tend not to get too worried about my body doing odd things or bits falling off or not working, I am getting on a bit after all.

But anything mouth related needs to be checked out ASAP. The last couple of weeks I've been waking up with an incredibly dry mouth, it now seems that I am not producing much saliva on my right side, and also a slightly odd taste is developing there...I also have become more numb at the back of my throat on that side causing me to lose my naturual swallow reflex when mucus drains from my nose into my throat...(technical eh!) This has caused me to have some slight coughing fits that are becomeing more regular.

No idea what this is, but its not right so have made a request for an appointment with Drs van Gemert and will get it checked out.

I'll update after I've spoken to the doctor.

1 year

2011-04-07T02:50:00.000-07:00

I missed an anniversary yesterday, surprising considering how there are 2 dates imprinted on my brain. April 6th and April 27th.

April 6 2010 is when I was told I had cancer...it was quite a rollercoaster day, I had already suspected because of the questions the Dentist and Doctor had asked (are you losing weight, feeling ok, tiredness, etc) but to actually hear the doctor say "malignant" it was both a shock and relief. I'd spent a whole weekend stressing about things which accounts for the relief, but the shock was more understandable.

1 year on...I seem to be well, touch wood, still having treatment of various kinds, lots of follow ups of course and soon to have some dental work that I am not going to enjoy and every day the yawn is getting closer and closer.

Yup, cancer sure makes life interesting. I can't believe I actually forgot..I guess thats a good thing.

April 27 2010 is the date of my op...strangely that seems so long ago now, much longer than a year but it does mean I'm 1/5th of the way towards my all clear. Maybe I'll have a small celebration of that anniversary!

April Fool

2011-04-01T11:31:00.000-07:00

Well not quite, but todays appointment didn't have a lot of content to it. A Check up and arrangments to have my implant done in May. Otherwise all seems fine. I need to get a slight tickle in my throat checked out if its still there when the time comes to jam lumps of metal in my jaw but other than that, very uneventful.

I can get 3 full fingers in..

2011-03-22T07:18:00.000-07:00

ok, reading that back its not the best headline in the world and may even attract some pretty strange google hits...but I am really quite pleased that I can shove 3 fingers in. ;)

My jaw has been getting looser and looser, possibly due to the regular massage, but more likely due to my stubbern willingness to let my body do its own thing and try to allow my yawns to go the distance. They don't yet..but each time I am aware of a little bit more stretching, some tearing, an occasional fair bit of pain and ultimatly a wider and wider yawn.

Still can't quite manage to get a full blown yawn out but I do feel its very close, perhaps on the aniversary of my surgery?

And as a measure of how wide I can now open I can put 3 fingers in (no pinky's) without scraping teeth...Considering at one point I could barely put 1 finger in and had to squish food into my mouth, this is a huge improvement. Doughnuts no longer hold any fear!.

Nothing much else to report, physio is still ongoing, doc/dentist appointment on April 1st. Depression seems to be under control, though I have been putting off making an appointment with the counciller...not sure why...just want to see how things go.

Might have a crack at a big mac soon.... :D

oops sorry

2011-03-05T14:06:00.000-08:00

Not been a lot to report, having regular physio facials with nothing much to say, aside from the fact the trainee physio has been having a go and a butterfly flapping on my face would have more impact...which is nice but probably not very effective.

I had a dental hygenist visit, much more sadism on show there, have to go every quarter for a couple of years.

And have a trip to the Doc and dentist lined up to discuss a plate in my right side as well as a possible implant on the left side to plug a missing tooth and improve my chewing ability. It seems the insurance are happy to pay for this so thats all good.

I'll update if anything interesting happens....

oh oh there is something, my mouth opening is definitly getting wider, through yawning, it hurts and sometimes it hurts more the next day but there is no doubt continued yawns are causing my mouth to open wider and wider.

Sadly still no sign of lip control so occasional biting of my lip when eating is still a problem, but at least I have a lot of feeling there now so I can feel when I am biting.

How much?

2011-02-14T08:03:00.000-08:00

It seems I have to pay a certain amount of my treatments, the 1st €170 to be exact, got a bill in last week and asked the physio about it today. She explained it was the norm..

oh kay...well I guess thats just how it is here with insurance based healthcare there's usually something to fork out.

session was uneventful, am definitioly feeling the area around the surgery site is much softer and more pliable, even if a lump does build up I find I can smooth it away now..so progress.

getting soft

2011-02-10T01:50:00.001-08:00

A very relaxing and enjoyable facial today, hopefully not follow up pain like last time.

Trainee sadist

2011-02-07T08:33:00.000-08:00

Today my physio had a student/intern in and asked if it was ok if she try out a few moves...I had no issue with that and in fact becuase she was so scared to hurt me, it was actually a very nice head/shoulders/facial massage in the end, interspersed with some harder painful bits when she was being shown how to do it properly...whimper.

I'll be interesting to see how long it takes for her not to care if she's hurting me :), then she can graduate.

A few hours later though my face was really sore and twinging...so I guess even the gentle stuff does something.

I have my referral letter for my depression councilling, I need to give them a call to arrange times etc. I also got a script for 90 days worth of Prozac to keep me chilled out...then promptly lost the drugs on the way back from the pharmacy...I had to go back to the docs today to get replacements...ah well.

All taped up

2011-02-03T01:50:00.001-08:00

As a result of some increased oedema and general swelling my Physio has taped up my face again in an effort to ease the flow, so to speak. Going to look a bit silly for the rest of the day but I don't mind giving it a go.

Physio was a little painful at times, as usual, but no real issues.

Depression is definitly lifting, I am feeling a lot more capable and while I won't go as far as saying I look forward to the challenges of the day, I'm not dreading them, which is good, consdiering I have a lot of school marking to get through as quickly as I can manage so I can look forward to an easy evening.

Doctor has sorted out a referral letter for me to go see the depression therapist and we'll hopefully start that pretty soon to round things off.

More physio next week.

Get Ready for new teeth

2011-01-28T00:53:00.000-08:00

Had my follow up appointment with Drs van Gemert and Dr Mel, the dentist. They're going to try and use a simple false plate to start with, on the toothless side, since there's not a lot of bone available to fix anything long term.

If that doesn't work then they will do something a bit more drastic, which hmmm, I'm not sure about! Hyperbaric treatments and bone implants then teeth implants...All sounds a bit extreme and a bit of a long haul painful slog. We'll see how we get on with the prothesis 1st which while not giving me complete chewing freedom will help I am sure...it may work or it may not. I will give it a try. Dr Mel should start fitting me for it in April.

Also he's going to apply to the insurance to have an implant on my upper good side, to replace the missing tooth. The argument being that as that is my dominant side I want reduce any restrictions I have with chewing, crusty/sharp food for example is a bit of a no-no at the moment.
If the insurance don't go for it though I will pay for it myself, since I can see a major benefit with that, and tbh I had always planned on having that missing tooth replaced after my previous dentist broke it, splitting it in 2, resulting in its removal. We'll see what the insurance has to say.

Learned a new fact today...teeth which do not have opposites to bite down on, tend to grow down to fill the space...never knew that!! Its something to be aware of apparently.

Oh and finally he wants me to carry on with the physio, even if the benefits now are small it will help avoid problems with oedema build up so...might be something we have to keep up for some time.

Penultimate Physio?

2011-01-27T04:44:00.000-08:00

Subject to Drs van Gemerts opinion, todays will probably be the penultimate physio session. I have an appointment with him tomorrow and he agrees that we're getting no more benefit then we'll have 1 last session next week and thats that...

Today's wasn't so bad actually, little harsh around the scar on my neck but fairly relaxing as I took some pre-emptive painkillers to take the edge off things.

feeling more normal

2011-01-25T15:55:00.000-08:00

The 5 day or so bender on tranqs may very well have been a bit of a downer, but in actual fact I have come out of it feeling a lot better. The incident that upset me no longer preys on my mind as much, even though I still feel hurt by it, I'm not reliving it over and over in my head any more and screaming in my head about how hurt I am.

I've caught up with my admin work and can now look forward to dealing with some intense marking followed by a relatively long period of not much to do where I can indulge my own interests at work to develop a new course.

So..back on track I think. Prozac doing its thing and starting to lift the mood a bit. Councilling to start soon and see how that goes.

I found some useful information on post cancer related issues...makes interesting and very recognisable reading...which helps me realise this is just another part of the disease that needs to be dealt with so life can return to normal.

no thats enough

2011-01-22T05:32:00.000-08:00

The tranqs are leaving me totally wasted, I am literally a zombie, walking around like the living dead or sleeping...nope..not good.

Not taking any more, we'll have to deal with any anxiety issues in some other way.

eek telling total strangers why I am sad.

2011-01-20T09:20:00.000-08:00

I have had something of a setback in my depression, I got very upset at the weekend and am totally unable to shake feelings of betrayal and intrusion that resulted, which are making me incredibly stressed, sad and generally feeling very dark, listless and uncommunicative.

Logically I know there's no real harm done and people had my interests at heart but but the mind is not happy and its making its point. I genuinely feel shocking and unable to focus on much more than my guitar playing...though I am focing myself to get my work admin done so I can relax when its complete.

Doc wants me to take the tranqs more to settle down my highly increased feelings of anxiety and stress and to generally calm down. I'm keeping more to myself as I know I am grumpy and emotionally unstable and Bina is pissed with me which I can't really cope with.
And the clincher...gotta go see a psycologist, the doc is going to set it up. I've had counselling in the past for depression, though that was more life/situation based so we'll have to see how this works for situations where there is a tangible physical reason for the emotional turmoil that follows.

Still though, its apparently a quite normal if not 100% common, post treatment kind of issue from major surgery and cancer treatment...but damn, it feels a bit like I'm on a loony wagon and can't jump off.

And no booze while I'm on the pills...being depressed really really sucks!! The only time I feel totally normal is when I am in social situcations and the pills stop that.

hmmm pain and sorrow.

2011-01-18T11:28:00.000-08:00

yup, quite sharp and strong..ish pain today after the session. Feels like someone hammered a nail into my jaw..not happy.

We're going to do a couple more and ask Drs van Gemert if he thinks we should continue. Its had a benefit for sure, swelling has been reduced and my face is much more "normal" but I think we've reached the end of any tangible benefits and its now just a weekly S&M session which I'm not really enjoying that much.

I have been noticing a slight increase in mouth opening though, yawns are getting a little bit wider, though I still can't crack my jaw open yet it feels close. Not without some discomfort though, but who knows, maybe the yawns are doing more to open my mouth than the finger thumb stretch excercises.

Depression is quite severe again after a bit of a lift. I had a really horrible horrible weekend alone and felt very very stressed and paraniod over my sense of self being taken away...sounds daft, but things that were important to me were "harmed" and I have trouble dealing with it. I'm climbing the walls a little.

I had to pop several tranq's to calm myself down and spent a lot of time sleeping. Getting back to work today has helped a little, being busy takes my mind off things, but I am not being very effective unless I am dealing with students, my admin is going to pot though and thats snowballing some stress that I need to deal with...glad that I have a very easy few months coming up at work.

I can feel my chin!!

2011-01-11T11:01:00.000-08:00

well the left side of it...todays rather deep physio massage seems to have eased the swelling around my chin quite a bit so I can actually feel my chin again.

nice...though it did hurt of course.

Happy New Year

2011-01-05T11:08:00.000-08:00

And after a nice break, we're off again, Physio today, not as bad as usual, I think quite a bit of healing got done over the break, so it was not so painful.

Quite looking forward to the end of it though, its getting to be a bit of a chore.

Depression seems to be stablising...things don't "feel" quite so bleak, and I am starting to get some motivation back to do things, been doing some chores that needed doing. Anxiety and stress levels have reduced considerably, and I'm, not quite so quick to stress out..still there though, and once or twice have resorted to the tranqs to ease some fears...not that they seem to do a huge amount.

I have enjoyed the break from work, I think that more than anything has been the most benefit, just chillin' is quite helpful.

Another visit to the Docs tomorrow to repeat the script and wait a couple more weeks for the pills to really kick in.

He's ok

2010-12-28T04:49:00.000-08:00

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?

2010-12-21T23:26:00.000-08:00

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

2010-12-21T02:55:00.000-08:00

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

2010-12-16T02:31:00.000-08:00

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

2010-12-15T02:46:00.000-08:00

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

2010-12-12T10:37:00.001-08:00

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

2010-12-07T04:33:00.001-08:00

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

2010-12-06T07:19:00.000-08:00

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.

2010-12-03T22:59:00.000-08:00

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

2010-11-30T03:13:00.000-08:00

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

2010-11-22T04:18:00.000-08:00

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

2010-11-20T18:22:00.000-08:00

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

2010-11-20T04:18:00.000-08:00

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

2010-11-16T03:50:00.001-08:00

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

2010-11-12T02:02:00.000-08:00

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

2010-11-08T06:56:00.001-08:00

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

2010-11-03T13:05:00.000-07:00

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

2010-10-21T12:17:00.001-07:00

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

2010-10-20T01:36:00.000-07:00

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

2010-10-17T10:06:00.000-07:00

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

2010-10-13T16:07:00.000-07:00

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

2010-10-09T01:42:00.001-07:00

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

2010-09-29T17:56:00.000-07:00

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

2010-09-28T00:29:00.001-07:00

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

2010-09-18T06:02:00.000-07:00

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

2010-09-10T06:32:00.000-07:00

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

2010-09-03T17:10:00.001-07:00

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...

2010-08-29T07:04:00.000-07:00

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

2010-08-24T16:23:00.000-07:00

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

2010-08-21T03:28:00.000-07:00

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

2010-08-19T11:41:00.000-07:00

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

2010-08-18T07:54:00.000-07:00

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

2010-08-14T13:37:00.000-07:00

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

2010-08-13T17:03:00.000-07:00

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

2010-08-12T04:14:00.000-07:00

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

2010-08-10T05:33:00.000-07:00

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

2010-08-07T04:25:00.000-07:00

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!

2010-08-06T06:29:00.000-07:00

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.

2010-08-05T06:58:00.000-07:00

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

2010-08-04T04:25:00.000-07:00

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

2010-08-03T23:38:00.000-07:00

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

2010-08-03T00:25:00.000-07:00

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

2010-08-02T09:07:00.000-07:00

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

2010-08-02T04:35:00.000-07:00

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.

2010-07-30T06:45:00.000-07:00

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

2010-07-29T22:47:00.000-07:00

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

2010-07-29T08:41:00.000-07:00

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!!!

2010-07-29T05:40:00.000-07:00

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

2010-07-28T00:04:00.000-07:00

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

2010-07-27T09:19:00.000-07:00

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

2010-07-27T04:13:00.000-07:00

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.

2010-07-26T09:29:00.000-07:00

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

2010-07-26T04:28:00.000-07:00

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

2010-07-24T18:08:00.000-07:00

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

2010-07-23T06:14:00.000-07:00

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

2010-07-22T01:35:00.000-07:00

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

2010-07-21T01:16:00.001-07:00

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

2010-07-20T06:01:00.000-07:00

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

2010-07-19T16:35:00.000-07:00

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

2010-07-19T09:33:00.000-07:00

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

2010-07-19T05:26:00.000-07:00

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

2010-07-19T02:03:00.000-07:00

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

2010-07-18T16:58:00.000-07:00

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.