Sunday, 29 August 2010

I've got this hole...

apologies to Jasper Carrot...

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

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

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

Tuesday, 24 August 2010

A good day

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

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

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

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

A good day for sure, nice and normal.

Saturday, 21 August 2010


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 about it...insomnia, 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.

Thursday, 19 August 2010

last regular checkup

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

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

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

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

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

Wednesday, 18 August 2010

No more morphine

I prefer alcohol :D

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

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

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

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

Checkup tomorrow, will update then.

Saturday, 14 August 2010

bit better

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

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

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

Friday, 13 August 2010

small update

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

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

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

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

I'll let you know.

Thursday, 12 August 2010

1st followup

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

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

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

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

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

Tuesday, 10 August 2010

4 Days later

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

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

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

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

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

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

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

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

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

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

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

Thats it so far..

Saturday, 7 August 2010

Sore mouth

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

Friday, 6 August 2010

RT 35 Done!

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

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

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

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

Time to heal and let things settle down to normal.

Thursday, 5 August 2010

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

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

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

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

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

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


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 ;)

Wednesday, 4 August 2010

rt33 2 to go

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

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

Seems they had tried to call me to find out where I was and had not got my message that I was held up 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.

Tuesday, 3 August 2010


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

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

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

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

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

RT32 3 to go

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

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

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

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

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

Monday, 2 August 2010

RT31 4 to go

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

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

Eventually the taxi firm sorted out another taxi firm to come collect me and I was taken there on the 54 euros each way, and he actually forgot to include the waiting 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.


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 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