Today was my 1st trip to the clinic in a taxi....boy was it slow. I assume the taxi company are paid on a time*miles formula since the driver took the longest route to Tilburg I've ever seen and was in no hurry.
I certainly won't have hurt them to have added on the extra 40 mins I ended up waiting when I asked to see Dr Oie about the pain in my tongue that stopped me talking all weekend. He diagnosed mucasitis (already??) and asked what pain killers I tried. I told him aspirin paracetamol and ibuprofen, but that none were effective. So he suggested morphine....hmmm much as I quite like the idea of being stoned for a week or so to remove pain, I don't think I want to go on morphine quite so soon. so he suggested something else, having just spoken to his drugs rep, he had a new product I could try, Caphosol. Apparently its quite effective and used mostly by chemo patients with mucasitis but they are confident it is effective. Its also quite pricey but the rep had left some...so what the hell. Its a mouthwash process you prep by mixing 2 ingredients, rinse, spit and repeat after a minute, and I now have 2.5 days supply.
After spending only 5 mins with Drs Oie though I had lost my place in the radiation list, and had to wait quite a while before I was called in for my daily zap..nothing to report there, no breakdowns. I am back on the Opaal machine this week, which seems a bit more reliable.
Taxi driver waited in the hall for me at least, so as soon as i was finally finished it was time to head home, again very slow and long route.
Soon as I got home used the Caphosol, and I think I noticed a distinct improvement after about an hour, though my tongue was already loosening up by the time I got home and I was able to talk quite well without much pain, I fully expected todays Zapping to have an impact by this evening. So far, not really, my tongue is still stiff, making speech a little slurred but not really painful....so more Caphosol before bedtime and we'll see how things are tomorrow.
Swallowing is starting to get a little more tricky though..it feels a little tight when I swallow, soI need to try to make sure my food is properly chewed and wet before swallowing, but so far still able to eat without pain.
Monday, 5 July 2010
Via the medium of mime
I can't talk at the moment. The Radio Therapy I am having has started to kick in with its side effects, at the 2 week mark as promised pretty much on schedule.
As side effects go, its not too bad, and tbh I can cope with just not talking for 4-6 weeks..I'm sure it will meet with everyone else's approval :D as they get a word in edgewise...plus theres the bonus that anything I say won't be misconstrued and turned into something nasty.
But it is a bit strange, funny and frustrating. I "can" talk if I have to, it just hurts like hell when I form certain sounds which are a bit random and too painful to experiment with. Today is a little easier than yesterday but fact is I have another RT treatment later today which will kick it back in tonight and subsequent treatments will make it progressively worse. So silence is the other of the day now.
I'm kinda dreading this weeks sessions though since the dreaded sore throat from hell is due to make its appearance any day now.
Of course the worst thing is, while its perfectly possible to indicate you can't speak with a few hand gestures..I think its pretty much impossible to say, I can't speak, can you speak to me in English!!!!
I am thinking of getting a few t-shirts printed up, but can't think of anything funny enough to put on them, I'll probably just have to carry a card round with me, "Sorry can't speak at the moment due to medical treatment, please speak to me in English..thanks"...need to be a big card, might just hang it round my neck.
and maybe take up mime classes ;)
As side effects go, its not too bad, and tbh I can cope with just not talking for 4-6 weeks..I'm sure it will meet with everyone else's approval :D as they get a word in edgewise...plus theres the bonus that anything I say won't be misconstrued and turned into something nasty.
But it is a bit strange, funny and frustrating. I "can" talk if I have to, it just hurts like hell when I form certain sounds which are a bit random and too painful to experiment with. Today is a little easier than yesterday but fact is I have another RT treatment later today which will kick it back in tonight and subsequent treatments will make it progressively worse. So silence is the other of the day now.
I'm kinda dreading this weeks sessions though since the dreaded sore throat from hell is due to make its appearance any day now.
Of course the worst thing is, while its perfectly possible to indicate you can't speak with a few hand gestures..I think its pretty much impossible to say, I can't speak, can you speak to me in English!!!!
I am thinking of getting a few t-shirts printed up, but can't think of anything funny enough to put on them, I'll probably just have to carry a card round with me, "Sorry can't speak at the moment due to medical treatment, please speak to me in English..thanks"...need to be a big card, might just hang it round my neck.
and maybe take up mime classes ;)
Sunday, 4 July 2010
a little better today
Must stop starting these reports with ok....tongue is much less tender today but still hard to say certain words...so I am still communicating through the medium of dance and mime..and getting damn good at it too.
Got some Paracetamol to boost the Ibuprofen, but am going to have to get something stronger, if it gets as bad or worse than Friday night/Saturday morning then it'll be on to the heavy stuff pdq.
Got some Paracetamol to boost the Ibuprofen, but am going to have to get something stronger, if it gets as bad or worse than Friday night/Saturday morning then it'll be on to the heavy stuff pdq.
Saturday, 3 July 2010
Quiet if not silent
Ok, today my tongue is still sore, and stiff at the back, attempting to move it around my cheeks causes some issues. But I can talk a little more today, though not without some pain. I am doing my best to avoid overuse of my tongue though so sign language and grunts are the order of the day..You would think after 10 years together though that Bina's knowledge of my grunts would be considerably better than it is!! sigh.
Taking some Ibuprofen which is taking the edge of the pain, and hoping the weekend without zaps will calm things down. But of course its going to come right back when we start zapping on Monday. So will make a point of mentioning the pain and see what painkilling goodies are on offer.
Fortunately, though it is interfering with my ability to move food around my mouth, for chewing, my swallowing is still good and largly unaffected, the pain there is still very mild...thats a plus for sure, as things will get much worse if/when that becomes a problem.
A quiet Brian, is easier to deal with than a hungry Brian.
Taking some Ibuprofen which is taking the edge of the pain, and hoping the weekend without zaps will calm things down. But of course its going to come right back when we start zapping on Monday. So will make a point of mentioning the pain and see what painkilling goodies are on offer.
Fortunately, though it is interfering with my ability to move food around my mouth, for chewing, my swallowing is still good and largly unaffected, the pain there is still very mild...thats a plus for sure, as things will get much worse if/when that becomes a problem.
A quiet Brian, is easier to deal with than a hungry Brian.
Friday, 2 July 2010
Silence is not golden!
Ok, the pain in my tongue is now quite bad, and I've taken some Ibuprofen...and told the family I am going to avoid talking for a bit and see if it settles down.
Also been forced to take a few naps today, so some fatigue creeping in. Managed to eat ok but talking is painful so I'll give it up for a while....Bina will finally get a word in edgeways :)
Also been forced to take a few naps today, so some fatigue creeping in. Managed to eat ok but talking is painful so I'll give it up for a while....Bina will finally get a word in edgeways :)
RT10...and rest
Ok RT10 was interesting, in the sense that it wasn't exactly routine, the machine stopped 3 times and needed to be reset. Which is a bit of a pain as any longer than 3 or 4 mins pinned to the table starts to get a little painful in the back of my neck, and indeed 10 mins or so on the table and my neck was aching.
But thats RT10 done, 2 weeks in...side effects are now starting to show but so far nothing that can't be managed. I'm pleased about this, the longer the sideeffects can be delayed the less impact they'll have on me overall.
Time for the end of week recap.
The dry mouth is not too big a problem, though I have to remind myself to chew gum,......btw.....how odd is it only being able to chew gum on one side of your mouth, it just feels wrong... And/or use regular mouthwashes. So that is not a problem.
I have a painful "spot" at the root of my tounge/back of my soft palete which is unpleasent and sometimes announces its presence when I move my tongue around while chewing.
The sore throat is getting a little worse and I am now aware of a slight niggle when I swallow..but at least I can still swallow without effort.
My jaw is feelling a little tight (on the right side of course) and swollen though there's no visible evidence of any more swelling, and it's "tingling" a lot...odd, not unpleasent, and probably more a healing thing than RT, but I do find it harder to open my mouth due to the tightness, my finger and thumb stretching exercices are becomeing a little more painful too.
Physically, yes I am starting to tire..not helped by the fantastically hot weather I'm sure, but I do notice my engery reserves are dropping and after a walk or cycle, I am slow to recover, I even went to bed at a decent time the last couple of nights...most unusual.
People also keep commenting on how well I've caught the sun, but in truth I've not been in the sun much at all..and on closer examination its the area where I have been irradiated which is looking sunburnt :). I'm noticing that if I do get the sun on my head that area tends to be a little sensitive to the heat..so I am keeping in the shadows as much as possible.
Emotionally...well, still blubbing like a baby for no reason, one of our collegues from work came round with a big bunch of flowers for us, (combined get well and happy birthday) as she'd been away and had missed me at the office. I had a few girly moments as she was saying how well I looked and so on...damn!
Going to hold off on painkillers for now, the throat/spot is not that severe yet, though we still have to wait for todays zapping to make its effects known.
Taxis are booked for next week and now its time to chill and enjoy a lovely Dutch summer weekend..Lets hope Holland win their World Cup game later, it'll make the town centre quite a party place.
But thats RT10 done, 2 weeks in...side effects are now starting to show but so far nothing that can't be managed. I'm pleased about this, the longer the sideeffects can be delayed the less impact they'll have on me overall.
Time for the end of week recap.
The dry mouth is not too big a problem, though I have to remind myself to chew gum,......btw.....how odd is it only being able to chew gum on one side of your mouth, it just feels wrong... And/or use regular mouthwashes. So that is not a problem.
I have a painful "spot" at the root of my tounge/back of my soft palete which is unpleasent and sometimes announces its presence when I move my tongue around while chewing.
The sore throat is getting a little worse and I am now aware of a slight niggle when I swallow..but at least I can still swallow without effort.
My jaw is feelling a little tight (on the right side of course) and swollen though there's no visible evidence of any more swelling, and it's "tingling" a lot...odd, not unpleasent, and probably more a healing thing than RT, but I do find it harder to open my mouth due to the tightness, my finger and thumb stretching exercices are becomeing a little more painful too.
Physically, yes I am starting to tire..not helped by the fantastically hot weather I'm sure, but I do notice my engery reserves are dropping and after a walk or cycle, I am slow to recover, I even went to bed at a decent time the last couple of nights...most unusual.
People also keep commenting on how well I've caught the sun, but in truth I've not been in the sun much at all..and on closer examination its the area where I have been irradiated which is looking sunburnt :). I'm noticing that if I do get the sun on my head that area tends to be a little sensitive to the heat..so I am keeping in the shadows as much as possible.
Emotionally...well, still blubbing like a baby for no reason, one of our collegues from work came round with a big bunch of flowers for us, (combined get well and happy birthday) as she'd been away and had missed me at the office. I had a few girly moments as she was saying how well I looked and so on...damn!
Going to hold off on painkillers for now, the throat/spot is not that severe yet, though we still have to wait for todays zapping to make its effects known.
Taxis are booked for next week and now its time to chill and enjoy a lovely Dutch summer weekend..Lets hope Holland win their World Cup game later, it'll make the town centre quite a party place.
Thursday, 1 July 2010
RT9 and recipies for cancer victims
RT9 was uneventful as usual, photo image to make sure then zap
Side effects are coming on line though. The dryness really isn't too severe today but clearly evident, the sore throat is a tiny bit more noticable but so far still not close to having any impact on my swallowing, its a bit like when you sing too much or have been crying.
Back of my tongue though at the root, right side, is feeling a bit sore today, thats quite noticible now, as well as general thickening of saliva, (mucosis) which I have been expecting, more mouthwashing.
All told though, nothing too unbearable yet..we're nearly a 1/3rd into it and I appear to be escaping the mega wrath of the RT...for now.
Dietician is insisitng I find some "soda" to add to my saline mouthwash, apparently I can pick it up at the dishwasher supplies, its a cleaning product?? Ok now I am quite confused, I think I better get my dutch friend to help me to translate the "recipe" for my mouthwash which explains this soda, I don't want to be getting the wrong stuff.
Ironically she also suggested I should drink a little beer, presumably stout? But as I really cannot abide the taste of any kind of beer I tried to helpfully suggest a little scotch and water might be a good substitute...sadly she disagreed and said it was too strong for me.....hmmmm I would like very much to challenge that assertion, soon.
I'm not really quite sure what to make of my dietician, she wants me to follow her recipe plan and eat lots of prescribed heathly food...but as I keep pointing out, I do eat a very healthy diet. Bina and I both dislike processed foods and prepare meals ourselves. I have as requested, increased my protien intake with fish, sashimi, cheese, etc. So why exactly I should start eating Ragout just because its on her list is beyond me.
I really don't see the point of this at all..as long as I am eating fine, my weight is stable and I am still able to swallow, I think this is a serious waste of time but no doubt at some point it will have some value...After all she's the only one who can decide when I need to switch to liquid meal drinks...hopefully I can avoid those..we'll see.
I also have my list of appointments for next week, so I can now book my taxi trips for next week and its all covered by my insurance. That will make quite a difference to my schedule, speeding things up.
EDIT...Thanks to my friend Dominic and his google fu, which failed me for some reason..Soda, is bicarb of soda...I'll pick it up from the baking dept rather than the dishwasher section.
Side effects are coming on line though. The dryness really isn't too severe today but clearly evident, the sore throat is a tiny bit more noticable but so far still not close to having any impact on my swallowing, its a bit like when you sing too much or have been crying.
Back of my tongue though at the root, right side, is feeling a bit sore today, thats quite noticible now, as well as general thickening of saliva, (mucosis) which I have been expecting, more mouthwashing.
All told though, nothing too unbearable yet..we're nearly a 1/3rd into it and I appear to be escaping the mega wrath of the RT...for now.
Dietician is insisitng I find some "soda" to add to my saline mouthwash, apparently I can pick it up at the dishwasher supplies, its a cleaning product?? Ok now I am quite confused, I think I better get my dutch friend to help me to translate the "recipe" for my mouthwash which explains this soda, I don't want to be getting the wrong stuff.
Ironically she also suggested I should drink a little beer, presumably stout? But as I really cannot abide the taste of any kind of beer I tried to helpfully suggest a little scotch and water might be a good substitute...sadly she disagreed and said it was too strong for me.....hmmmm I would like very much to challenge that assertion, soon.
I'm not really quite sure what to make of my dietician, she wants me to follow her recipe plan and eat lots of prescribed heathly food...but as I keep pointing out, I do eat a very healthy diet. Bina and I both dislike processed foods and prepare meals ourselves. I have as requested, increased my protien intake with fish, sashimi, cheese, etc. So why exactly I should start eating Ragout just because its on her list is beyond me.
I really don't see the point of this at all..as long as I am eating fine, my weight is stable and I am still able to swallow, I think this is a serious waste of time but no doubt at some point it will have some value...After all she's the only one who can decide when I need to switch to liquid meal drinks...hopefully I can avoid those..we'll see.
I also have my list of appointments for next week, so I can now book my taxi trips for next week and its all covered by my insurance. That will make quite a difference to my schedule, speeding things up.
EDIT...Thanks to my friend Dominic and his google fu, which failed me for some reason..Soda, is bicarb of soda...I'll pick it up from the baking dept rather than the dishwasher section.
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