It was three months ago this week that I got the cancer diagnosis and in that time a rather ordinary word has taken on a new meaning. That word is "normal".
In the days "BC" normal was getting the train to work, picking up a bottle of milk from Sainsburys, walking the dogs. Now "normal" in cancer-speak seems to be the most un-normal things you could come up with, for example.
"Now take these poisonous chemicals, they will make you feel really sick, that's normal. We'll give you some slightly less poisonous chemicals to make you feel normal again."
Another one was during chemo last week, bear in mind this is cycle three, I have another 9 to go. I'm getting used to the chemo sessions, trekking back and forth to the hospital is of course rapidly becoming the new normal. Everything is going fine up until they run in the second set of magnesium and calcium salts (another side-effect preventer) and the nurse asks me if I'd like a drink, what came out of my mouth sounded like Ph'nglui mglw'nafh Cthulhu R'lyeh wgah'nagl fhtagn as my mouth and tongue decided they had forgotten how to make words.
Now this only lasted a matter of seconds but caused a bit of a stir and the summoning of a man in a white coat bearing a stethoscope who, after a few questions, established that this can happen on quickly delivered high doses of calcium and that it was, of course, normal.
I'm sorry but accidentally summoning the Elder Gods when asking for a cup of tea and shortbread biscuit is never going to be bastard normal.
But as I'm discovering three months in, as soon as someone hands down the dread diagnosis, nothing will be normal ever again.
Sunday, 27 April 2014
Sunday, 13 April 2014
Radioactivity
I now make Geiger counters crackle
Fig 27: Yes Ralf, but it might just keep me alive too
So this week had me back in the hospital, this time for the big enchilada, the SIRT procedure.Just to remind you this is the bit where they put these tiny spheres dosed with Yttrium-90 directly into the liver where they should lodge up close to the nasty tumours and zap them with beta radiation and killing them, or at the very least giving them several hard kicks in the nadgers.
Now this is incredibly time critical becuase Y-90 only has a 3 day half life so the treatment needs to be administered whilst its still effective. These spheres are custom ordered from a company called Sirtex in Australia and they are then flown to a nuclear lab in Sweden where they get made radioactive - most likely a process involving nuclear reactors and a moose - then they come to the UK in, I am suspecting, a big lead box with "DO NOT OPEN THIS BASTARD!" written on it in big red letters. I mention this because as at 4pm on my date of admission the hospital were still waiting on a bed for me.
I made a phone call to the senior consultant oncolgist running the trial. I had my bed fifteen minutes later. And as an extra bonus I found when I got in they'd put me in a single side room. Result!
So a good, or at least reasonable, night followed and in the morning after the ritual 6am poking I toddle off for a brew in the day room. On my way back what do I hear drifting down the corridor...
"Nurse! Nuuuuurse! I'm going home now! Nurse!" Yep, it was the man from bed 7. He was still there, still shouting and still giving master-classes in Extreme Gittery. I went back to my room and closed the door.
So let's fast forward to the procedure. Essentially its the same as last week, they thread a wire up through an artery in my groin to the liver but this time squirt in the nasty stuff. I sign the forms and off we go only this time there's a problem as the access artery in my leg didn't like being poked last week and is trying to hide so there is lots of kerfuffle and multiple attempts at wielding scalpel blades, false starts they had to back out of and so on trying to get access.
This hurt. A lot. At one point they must have hit a major nerve as it felt like a flash fire was spreading down my leg. I may have screamed a bit.
However after a few minutes we are awash with local anathetics and the tubes are in position so out come the two boxes of Y-90 spheres. I was rather hoping they would play the incidental music from the Bond movies where the baddie's world destroying death machine is first show but no, NHS cutbacks I guess. The boxes themselves were perspex ones with a couple of knobs on the outside and two small glass bottles inside and from here on it it got all endearingly lo-tech. A couple of needles with tubes attached are poked in connected to me and there's some sort of flush mechanism attached and in the spheres go, helped along by one of the doctors gingerly gripping the output tube with forceps and giving it a gentle shake to make sure it flows smoothly. One bottle, a third of the total, goes to the left lobe and the rest after a wire reposition goes into the right. The whole thing takes about half an hour and we're done. The doctors are happy, Nuclear Medicine are happy we haven't contaminated the hospital and after half an hour pressing on my groin I'm allowed back up to the ward.
The following day I have a couple of scans to make sure the spheres aren't anywhere they shouldn't be and I'm allowed home. "You may feel a bit flu like" they warn me but actually I feel fine.
Well I did until that evening when I felt I'd been hit by a train. I've been in bed pretty much since then until today with what felt like flu without the fever, that bone-aching tiredness that makes you just want to sleep.
Still I'm here, nothing has exploded and apart from turning into SlumberMan I didn't get any super hero powers.
They do a CT scan in a month from now. Let's hope its done some good.
Anyway here's some more Kraftwerk, because you can never have enough Kraftwerk. Sing along now.
Fig 42: Reisen, Zeit, Medizin, Unterhaltung
Fig 27: Yes Ralf, but it might just keep me alive too
So this week had me back in the hospital, this time for the big enchilada, the SIRT procedure.Just to remind you this is the bit where they put these tiny spheres dosed with Yttrium-90 directly into the liver where they should lodge up close to the nasty tumours and zap them with beta radiation and killing them, or at the very least giving them several hard kicks in the nadgers.
Now this is incredibly time critical becuase Y-90 only has a 3 day half life so the treatment needs to be administered whilst its still effective. These spheres are custom ordered from a company called Sirtex in Australia and they are then flown to a nuclear lab in Sweden where they get made radioactive - most likely a process involving nuclear reactors and a moose - then they come to the UK in, I am suspecting, a big lead box with "DO NOT OPEN THIS BASTARD!" written on it in big red letters. I mention this because as at 4pm on my date of admission the hospital were still waiting on a bed for me.
I made a phone call to the senior consultant oncolgist running the trial. I had my bed fifteen minutes later. And as an extra bonus I found when I got in they'd put me in a single side room. Result!
So a good, or at least reasonable, night followed and in the morning after the ritual 6am poking I toddle off for a brew in the day room. On my way back what do I hear drifting down the corridor...
"Nurse! Nuuuuurse! I'm going home now! Nurse!" Yep, it was the man from bed 7. He was still there, still shouting and still giving master-classes in Extreme Gittery. I went back to my room and closed the door.
So let's fast forward to the procedure. Essentially its the same as last week, they thread a wire up through an artery in my groin to the liver but this time squirt in the nasty stuff. I sign the forms and off we go only this time there's a problem as the access artery in my leg didn't like being poked last week and is trying to hide so there is lots of kerfuffle and multiple attempts at wielding scalpel blades, false starts they had to back out of and so on trying to get access.
This hurt. A lot. At one point they must have hit a major nerve as it felt like a flash fire was spreading down my leg. I may have screamed a bit.
However after a few minutes we are awash with local anathetics and the tubes are in position so out come the two boxes of Y-90 spheres. I was rather hoping they would play the incidental music from the Bond movies where the baddie's world destroying death machine is first show but no, NHS cutbacks I guess. The boxes themselves were perspex ones with a couple of knobs on the outside and two small glass bottles inside and from here on it it got all endearingly lo-tech. A couple of needles with tubes attached are poked in connected to me and there's some sort of flush mechanism attached and in the spheres go, helped along by one of the doctors gingerly gripping the output tube with forceps and giving it a gentle shake to make sure it flows smoothly. One bottle, a third of the total, goes to the left lobe and the rest after a wire reposition goes into the right. The whole thing takes about half an hour and we're done. The doctors are happy, Nuclear Medicine are happy we haven't contaminated the hospital and after half an hour pressing on my groin I'm allowed back up to the ward.
The following day I have a couple of scans to make sure the spheres aren't anywhere they shouldn't be and I'm allowed home. "You may feel a bit flu like" they warn me but actually I feel fine.
Well I did until that evening when I felt I'd been hit by a train. I've been in bed pretty much since then until today with what felt like flu without the fever, that bone-aching tiredness that makes you just want to sleep.
Still I'm here, nothing has exploded and apart from turning into SlumberMan I didn't get any super hero powers.
They do a CT scan in a month from now. Let's hope its done some good.
Anyway here's some more Kraftwerk, because you can never have enough Kraftwerk. Sing along now.
Fig 42: Reisen, Zeit, Medizin, Unterhaltung
Sunday, 6 April 2014
Of Angiograms and The Man in Bed 7
Bit of a gap since the last post but my excuse was that I've been in hospital; properly, with a bed and nurses and everything. I've actually done pretty well as I'm knocking on the door of 50 years old and this was the first time I've had to stay overnight in a hospital.
The reason I was there was they need to fiddle around with my liver a bit before they shove the radioactive spheres into it. Now the idea behind these spheres is that if they squirt them into the correct artery that supplies the cancerous bits with blood these spheres are just the right size to stick in the artery where it narrows thus allowing them to offload beta radiation directly into the tumor. Neat! The downside is that this "correct" artery has a couple of branches off to the stomach and elsewhere and these need to be blocked off first so the spheres don't do to the healthy bits. This procedure is all done under a very clever (and expensive) X-ray angiogram machine and through a wire and tube that's been inserted into the groin and threaded up to the liver.
So on the day of the procedure I'm wheeled off the ward to the lift, then back to the ward as they've forgotten to take bloods to check my platelet count* and then off we go again. Everything is all explained to me and yet more consent forms are signed and then my role appears to be lie under the machine, don't move and hold your breath when we tell you to. In the meantime you get to listen to the two registrars and the senior consultant (the nice and amiable Dr See who came in and advised on the tricky bits) going about their work which, at times, sounded like you were in a machine shop and they were trying to work out which size screws and bolts would fit...
"... well that's a good sized gastric artery so we'll try with two ten-by-fives and the see if we can get a three-eighteenths Armstrong-Whitworth countersunk to close it ..."
Right at the end when all the stray blood vessels are closed in came the guy from Nuclear Medicine with a lead lined box. Now this isn't the treatment but it mimics it and is a very low dose of Technitium-99m which is used as a radioactive tracer. They inject this where they would put the spheres and if it only goes to the liver we're onto a winner.
So I'm injected with this stuff and I aquire my first superpower which is "lie completely flat for the next two hours and firmly press this cotton pad into your groin to stop the bleeding" which, as superpowers go, is a pretty crap one.
The wait isn't too bad mind as I spend most of it underneath a rotating gamma detecting camera which builds up a pretty 3D image of my insides. When it was done the technician showed me the image of my liver rotating round and round in pink and orange hues; it looked absolutely normal, just like in the text books and it's hard to believe there's something wrong with it.
So there we all are and its back to the ward.
To be fair I was expecting worse. It was clean but too hot** (enough to raise my body temperature to a nurse-worrying 37.9 at one point) and the staff were great - friendly, courteous and attentive. Even the food wasn't bad. The big problem was the noise and constant disturbance; the day kicks off at six and they didn't turn the lights down until midnight, everyone including me was on 4 hour observations so even if you do get to sleep they wake you up at 2am for blood pressure and general pokage and this being the oncology ward half the people in my bay of 7 beds are on machines that go "beep" so as they roll over in their sleep they block the flow and "BEEEP BEEEP FECKING ATTEND TO ME BEEEEEP!" happens.
And of course there are always the other patients. Now most were fine, nice people whom I exchanged pleasantries and a little conversation with. And then there was the man in bed 7. At first I was being charitable and thinking maybe being elderly he was a bit confused, frightened and in pain. Then I thought he was a bit of a git. Then a fully paid up git. Finally I settled on the fact he has a PhD in gittishness from the University of Gittingen and was currently Emeritus Chair of Obnoxiousness and Git Studies at Trinity College.
His constant background routine was like the old priest in the Father Ted comedy series except his yelled phrases were "Nurse!", "Bottle!" and "Tablets!". This went on all night. In the early morning he decided he was going home, whilst connected to two drip lines. The nurses, under lots of provocation including racial and extreme sexual harrasement (he offered a nurse "more than the NHS paid for an hour" at one point) managed to get him back into bed several times until he decided quite calmly to disconnect his drips - fortunately he was just on fluids rather that chemo - and stand up. And promptly fall down. At this point he got moved to a smaller side ward. Which was probably just as well as a queue was starting to form to kill him just like in Murder on the Orient Express.
They let me go home after two days in which, despite taking earplugs and eyemasks, I probably slept a total of four hours. That was Thursday. Now you know why I haven't blogged until today. I've been asleep.
A hospital is a treatment machine. It's there to do stuff to to you. It most certainly is not somewhere you go to get better.
And I get to do the whole thing again next week.
* That's important because if its too low I bleed out all over the angioscopy suite and that blows the NHS cleaning up budget for the month.
** But the hospital as a whole has the heating cranked up to the max
The reason I was there was they need to fiddle around with my liver a bit before they shove the radioactive spheres into it. Now the idea behind these spheres is that if they squirt them into the correct artery that supplies the cancerous bits with blood these spheres are just the right size to stick in the artery where it narrows thus allowing them to offload beta radiation directly into the tumor. Neat! The downside is that this "correct" artery has a couple of branches off to the stomach and elsewhere and these need to be blocked off first so the spheres don't do to the healthy bits. This procedure is all done under a very clever (and expensive) X-ray angiogram machine and through a wire and tube that's been inserted into the groin and threaded up to the liver.
So on the day of the procedure I'm wheeled off the ward to the lift, then back to the ward as they've forgotten to take bloods to check my platelet count* and then off we go again. Everything is all explained to me and yet more consent forms are signed and then my role appears to be lie under the machine, don't move and hold your breath when we tell you to. In the meantime you get to listen to the two registrars and the senior consultant (the nice and amiable Dr See who came in and advised on the tricky bits) going about their work which, at times, sounded like you were in a machine shop and they were trying to work out which size screws and bolts would fit...
"... well that's a good sized gastric artery so we'll try with two ten-by-fives and the see if we can get a three-eighteenths Armstrong-Whitworth countersunk to close it ..."
Right at the end when all the stray blood vessels are closed in came the guy from Nuclear Medicine with a lead lined box. Now this isn't the treatment but it mimics it and is a very low dose of Technitium-99m which is used as a radioactive tracer. They inject this where they would put the spheres and if it only goes to the liver we're onto a winner.
So I'm injected with this stuff and I aquire my first superpower which is "lie completely flat for the next two hours and firmly press this cotton pad into your groin to stop the bleeding" which, as superpowers go, is a pretty crap one.
The wait isn't too bad mind as I spend most of it underneath a rotating gamma detecting camera which builds up a pretty 3D image of my insides. When it was done the technician showed me the image of my liver rotating round and round in pink and orange hues; it looked absolutely normal, just like in the text books and it's hard to believe there's something wrong with it.
So there we all are and its back to the ward.
Fig 62: An NHS ward, last week .
To be fair I was expecting worse. It was clean but too hot** (enough to raise my body temperature to a nurse-worrying 37.9 at one point) and the staff were great - friendly, courteous and attentive. Even the food wasn't bad. The big problem was the noise and constant disturbance; the day kicks off at six and they didn't turn the lights down until midnight, everyone including me was on 4 hour observations so even if you do get to sleep they wake you up at 2am for blood pressure and general pokage and this being the oncology ward half the people in my bay of 7 beds are on machines that go "beep" so as they roll over in their sleep they block the flow and "BEEEP BEEEP FECKING ATTEND TO ME BEEEEEP!" happens.
And of course there are always the other patients. Now most were fine, nice people whom I exchanged pleasantries and a little conversation with. And then there was the man in bed 7. At first I was being charitable and thinking maybe being elderly he was a bit confused, frightened and in pain. Then I thought he was a bit of a git. Then a fully paid up git. Finally I settled on the fact he has a PhD in gittishness from the University of Gittingen and was currently Emeritus Chair of Obnoxiousness and Git Studies at Trinity College.
His constant background routine was like the old priest in the Father Ted comedy series except his yelled phrases were "Nurse!", "Bottle!" and "Tablets!". This went on all night. In the early morning he decided he was going home, whilst connected to two drip lines. The nurses, under lots of provocation including racial and extreme sexual harrasement (he offered a nurse "more than the NHS paid for an hour" at one point) managed to get him back into bed several times until he decided quite calmly to disconnect his drips - fortunately he was just on fluids rather that chemo - and stand up. And promptly fall down. At this point he got moved to a smaller side ward. Which was probably just as well as a queue was starting to form to kill him just like in Murder on the Orient Express.
They let me go home after two days in which, despite taking earplugs and eyemasks, I probably slept a total of four hours. That was Thursday. Now you know why I haven't blogged until today. I've been asleep.
A hospital is a treatment machine. It's there to do stuff to to you. It most certainly is not somewhere you go to get better.
And I get to do the whole thing again next week.
* That's important because if its too low I bleed out all over the angioscopy suite and that blows the NHS cleaning up budget for the month.
** But the hospital as a whole has the heating cranked up to the max
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