Well the new portacath has been in a week and, miracle of miracles, it's working! Currently it's dribbling Cetuximab into me very slowly as apparently it's not a drug you really want to rush as very bad things happen if you do.
After this comes the Irinotecan, dubbed "Evil Irene" by some patients which can be given a bit faster but which has its own particularly fun side effect, acute cholinergic syndrome which the medical literature cheerfully notes "can be fatal." To combat this they give you a shot of atropine first which, equally cheerfully, is the active ingredient in the poisonous plant Deadly Nightshade, also called Belladonna. So they give you a poison to counteract the other poison.
Isn't chemotherapy wonderful.
After that it's a simple matter of pumping you full of Folinic Acid which serves to give the next drug, Fluorouracil (5FU) a leg up. That's a nice drug and only gives you the squits, make you throw up, stops your bone marrow making white cells and platelets so you're prone to neutropenic sepsis and/or bleeding uncontrollably and also throws in palmar-plantar syndrome and mouth ulcers into the mix. Oh and the most bone weary fatigue you've ever had.
It had better be working or I'm going to be one mightily pigged off dragon.
Wednesday 18 February 2015
Sunday 8 February 2015
The man in bed eight
If you've been keeping up with the blog you'll know that last week didn't exactly go very smoothly and come Thursday afternoon I was having a little bit of a sense of humour failure. So when I finally did get to sit down in the comfy chair and start connecting up to the necessary tubes and wires what's the last thing I want to hear from next door?
"Groan... Moan... Nurrrrse!"
Oh dear Jesus Christ on a Pogo Stick, it's the return of The Man From Bed Seven
Except it wasn't as it became quite clear that this chap was indeed in some kind of distress. I caught a glimpse of him when the overstretched nursing staff finally did get around to him, curled up almost in a foetal position on a hospital bed, wet from a spilt drink and a smell indicating that something had gone rather wrong in the stoma department.
"Where am I? What's happening?" he asked. Over and over again.
"You're in hospital Mr Smith1 they told him.
"Where am I?"
There were brief flashes of lucidity, he apologised to the nurses for the state he was in and the trouble he was causing, back in the day he had clearly been a civil and polite gentleman, but then the clouds rolled back in front of the sun and he couldn't understand why they needed to change his shirt.
"It's because you're all wet Mr Smith"
"What's happening?"
And then you hear the words you never want to hear in an oncology unit or quite frankly in any medical context. "Oh my god! <Senior Nurse Name> can you come here right away please"
I stuck my head in my laptop and tried to ignore the grunts and moans of pain from beyond the curtain.
After about half an hour whatever it was had been sorted out, treatment was over and they bundled up Mr Smith into his outside coat and humiliating knitted woolly bobble hat and plonked him in a wheelchair.
"Where am I going?"
"You're going home Mr Smith?"
"Home?" his voice visibly brightened.
"To the nursing home."
"I'm going home?" not so bright this time.
Then they left him. They were running late and had to cram the last few of us cancer dudes through the poking and prodding by eight when they shut up shop so Mr Smith just got unceremoniously parked up in a chair, hunched over in a huge coat and stupid hat like some kind of decrepit smurf who asked over and over "Where am I going?"
At one point he tried to move his chair. As the brakes were on all he succeeded in doing was making it rock backwards at such an alarming degree myself and another patient called out for one of the nurses to grab him as he was severely in danger of toppling backwards and dashing his brains out.
Eventually his transport must have arrived as some orderly came and wheeled him away, still asking where he was going.
He had nobody with him. He had no clue what had been done to him. He had no clue where he was going.
And as I sit here reeling from the effects of the treatment I consented to I have to wonder why we as a society were inflicting the same poisoning on this poor bastard. Maybe to ease his symptoms? Maybe some (absent) relative was a "You must save my grandpa at all costs" emotional mess? I don't know and I don't have any answers.
I'm not sure though that me and that other patient who called the nurse over did him any favours though.
1 not his real name of course.
"Groan... Moan... Nurrrrse!"
Oh dear Jesus Christ on a Pogo Stick, it's the return of The Man From Bed Seven
Except it wasn't as it became quite clear that this chap was indeed in some kind of distress. I caught a glimpse of him when the overstretched nursing staff finally did get around to him, curled up almost in a foetal position on a hospital bed, wet from a spilt drink and a smell indicating that something had gone rather wrong in the stoma department.
"Where am I? What's happening?" he asked. Over and over again.
"You're in hospital Mr Smith1 they told him.
"Where am I?"
There were brief flashes of lucidity, he apologised to the nurses for the state he was in and the trouble he was causing, back in the day he had clearly been a civil and polite gentleman, but then the clouds rolled back in front of the sun and he couldn't understand why they needed to change his shirt.
"It's because you're all wet Mr Smith"
"What's happening?"
And then you hear the words you never want to hear in an oncology unit or quite frankly in any medical context. "Oh my god! <Senior Nurse Name> can you come here right away please"
I stuck my head in my laptop and tried to ignore the grunts and moans of pain from beyond the curtain.
After about half an hour whatever it was had been sorted out, treatment was over and they bundled up Mr Smith into his outside coat and humiliating knitted woolly bobble hat and plonked him in a wheelchair.
"Where am I going?"
"You're going home Mr Smith?"
"Home?" his voice visibly brightened.
"To the nursing home."
"I'm going home?" not so bright this time.
Then they left him. They were running late and had to cram the last few of us cancer dudes through the poking and prodding by eight when they shut up shop so Mr Smith just got unceremoniously parked up in a chair, hunched over in a huge coat and stupid hat like some kind of decrepit smurf who asked over and over "Where am I going?"
At one point he tried to move his chair. As the brakes were on all he succeeded in doing was making it rock backwards at such an alarming degree myself and another patient called out for one of the nurses to grab him as he was severely in danger of toppling backwards and dashing his brains out.
Eventually his transport must have arrived as some orderly came and wheeled him away, still asking where he was going.
He had nobody with him. He had no clue what had been done to him. He had no clue where he was going.
And as I sit here reeling from the effects of the treatment I consented to I have to wonder why we as a society were inflicting the same poisoning on this poor bastard. Maybe to ease his symptoms? Maybe some (absent) relative was a "You must save my grandpa at all costs" emotional mess? I don't know and I don't have any answers.
I'm not sure though that me and that other patient who called the nurse over did him any favours though.
1 not his real name of course.
Friday 6 February 2015
Port-a-crash
So Wednesday came and I happily winged my way down to the oncology day unit for the start of my FOLFRI/Cetuximab treatment. The bruising where they put in my port the other week was going down, the incisions healing up nicely and a couple of days earlier it had bled back really well after a quick flush.
So I sit down, they whack the Huber needle in (ouch) and do the precautionary draw back to make sure its working.
Nothing, nada, zilch. Not the tiniest spot of the red stuff comes out. So we try a flush, still nothing. I stand up and cough to dislodge it if it's got stuck against the vessel wall, nope. At one point they had me bending from side to side doing an "I'm a little teapot" impersonations and still no joy.
Right, chemicals. Urokinase to be precise. This is an enzyme that should dissolve any blood that's clotted in the tube that leads from the port to just above my heart. It takes an hour to work so I get a cup of NHS "tea" (which is flavourless brown water with essence of might once have been milk) and dick around on Twitter for sixty minutes.
And guess what, still nothing. So we change the needle (more ouch) and of course it still doesn't work. The day unit staff ring up vascular access who recommend extra Urokinase and another hours wait and sacrificing a cockerel to Asclepius, the Ancient Greek god of medicine. Turns out cytotoxic pharmacy were all out of cockerels so we had to skip that bit; which is a shame as after more waiting it still isn't drawing back.
It's now knocking on the door of 4 o'clock and my treatment I know will take five hours minimum and the chemo unit closes at eight. "We're going to have to get it X-Rayed" say the nurses so off I go and come back 45 minutes later (this is the NHS, you queue up for everything). After a little chat the nurses go off to ask vascular access the score. Now they knock off at 5 so colour me surprised when the nurses come back with the news they're not answering the phone. "But we're just going to put a cannula in your hand and start the treatment that way." Poke... prod... "sharp scratch love", cannula in.
At this point I gently point out that my chemo has to be precisely co-ordinated; this drug, then that drug and so on culminating in a pump being connected to a slow speed infusion that runs over two days. Now I can't go home with a cannula in my paw so I further point out, a little more forcefully, that not only are they going to be putting in some overtime tonight they are going to have to get me that most precious of NHS resources, a hospital bed for a couple of days.
"Oh the portacath will start working," says cheery nurse.
I remind her the definition of madness is doing the same thing over and over again and expecting a different result. She goes off for a little meeting with her colleagues, they come back with the on call doc who's had a look at my x-ray and decided that the end of the line is indeed in the wrong position and it would be dangerous to use.
They send me home and will call me tomorrow they say.
---
This is the NHS as I keep reminding you and although they do treatment "free at the point of use" and that treatment is usually to a high standard timekeeping and customer focus are as mythical creatures to them as the manticore and basilisk. So at 10am the following day (they open at 8) I am on the phone to them. I'm told to come in as soon as possible, go straight to vascular access and they'll put a temporary PICC line in until they can sort out the portacath. So I run around like a blue arsed fly and get myself to the hospital for 12
"Can you come back at one" say Vascular Access, "half our nurses are on their lunch break"
I bugger off to the food court and have a heart attack lunch from the burger joint and report back at one to be told the port is unfixable as the line has completely worked its way loose and curled back on itself and is prodding into the wall of a major vein.
Good job they didn't use it then.
So that's got to come out and it does and an hour and a half later I'm duly PICCed and down in the oncology day unit reception. "They told me to come as soon as I could."
"Oh yes. You're booked in for 5pm. Take a seat outside"
I am normally a calm peaceful dragon but I was now ready to torch the place and told them I was going absolutely nowhere, taking a hospital porter hostage and would send back a burnt limb every 10 minutes until I got to see the person in charge.
30 minutes later we're hooked up the machine that goes beep and the festivities can start. It took the full five hours and a bit more. Only had to correct them on the treatment I was having twice (oddly over the same drug, Ondansetron, that's pretty important as it stops you projectile vomiting the whole time you're having treatment)
Now I'm a strong willed person and will stand up and advocate for myself. What chance does someone who's a bit weak, confused and frail stand in the face of this nonsence.
Well I'll tell you in the next post.
So I sit down, they whack the Huber needle in (ouch) and do the precautionary draw back to make sure its working.
Fig 36c - A Huber Needle, big buggers aren't they
Nothing, nada, zilch. Not the tiniest spot of the red stuff comes out. So we try a flush, still nothing. I stand up and cough to dislodge it if it's got stuck against the vessel wall, nope. At one point they had me bending from side to side doing an "I'm a little teapot" impersonations and still no joy.
Right, chemicals. Urokinase to be precise. This is an enzyme that should dissolve any blood that's clotted in the tube that leads from the port to just above my heart. It takes an hour to work so I get a cup of NHS "tea" (which is flavourless brown water with essence of might once have been milk) and dick around on Twitter for sixty minutes.
And guess what, still nothing. So we change the needle (more ouch) and of course it still doesn't work. The day unit staff ring up vascular access who recommend extra Urokinase and another hours wait and sacrificing a cockerel to Asclepius, the Ancient Greek god of medicine. Turns out cytotoxic pharmacy were all out of cockerels so we had to skip that bit; which is a shame as after more waiting it still isn't drawing back.
It's now knocking on the door of 4 o'clock and my treatment I know will take five hours minimum and the chemo unit closes at eight. "We're going to have to get it X-Rayed" say the nurses so off I go and come back 45 minutes later (this is the NHS, you queue up for everything). After a little chat the nurses go off to ask vascular access the score. Now they knock off at 5 so colour me surprised when the nurses come back with the news they're not answering the phone. "But we're just going to put a cannula in your hand and start the treatment that way." Poke... prod... "sharp scratch love", cannula in.
At this point I gently point out that my chemo has to be precisely co-ordinated; this drug, then that drug and so on culminating in a pump being connected to a slow speed infusion that runs over two days. Now I can't go home with a cannula in my paw so I further point out, a little more forcefully, that not only are they going to be putting in some overtime tonight they are going to have to get me that most precious of NHS resources, a hospital bed for a couple of days.
"Oh the portacath will start working," says cheery nurse.
I remind her the definition of madness is doing the same thing over and over again and expecting a different result. She goes off for a little meeting with her colleagues, they come back with the on call doc who's had a look at my x-ray and decided that the end of the line is indeed in the wrong position and it would be dangerous to use.
They send me home and will call me tomorrow they say.
---
This is the NHS as I keep reminding you and although they do treatment "free at the point of use" and that treatment is usually to a high standard timekeeping and customer focus are as mythical creatures to them as the manticore and basilisk. So at 10am the following day (they open at 8) I am on the phone to them. I'm told to come in as soon as possible, go straight to vascular access and they'll put a temporary PICC line in until they can sort out the portacath. So I run around like a blue arsed fly and get myself to the hospital for 12
"Can you come back at one" say Vascular Access, "half our nurses are on their lunch break"
I bugger off to the food court and have a heart attack lunch from the burger joint and report back at one to be told the port is unfixable as the line has completely worked its way loose and curled back on itself and is prodding into the wall of a major vein.
Good job they didn't use it then.
So that's got to come out and it does and an hour and a half later I'm duly PICCed and down in the oncology day unit reception. "They told me to come as soon as I could."
"Oh yes. You're booked in for 5pm. Take a seat outside"
I am normally a calm peaceful dragon but I was now ready to torch the place and told them I was going absolutely nowhere, taking a hospital porter hostage and would send back a burnt limb every 10 minutes until I got to see the person in charge.
30 minutes later we're hooked up the machine that goes beep and the festivities can start. It took the full five hours and a bit more. Only had to correct them on the treatment I was having twice (oddly over the same drug, Ondansetron, that's pretty important as it stops you projectile vomiting the whole time you're having treatment)
Now I'm a strong willed person and will stand up and advocate for myself. What chance does someone who's a bit weak, confused and frail stand in the face of this nonsence.
Well I'll tell you in the next post.
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