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.

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.

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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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