T - 4. The other, Other side of the Looking Glass...

Seeing as the majority of the previous entries were written whilst hooked up to the infuser by one and often two feed lines, I thought I'd try to capture what it feels like from a more considered POV  - offline (soz -  that Management Bullshit hasn't entirely left me) rather than trying to write from a viewpoint bang in the middle of the chemical gumbo pot.

It's 9pm now and in two hours I will be starting my last Busulfan infusion but in the meantime I am off the infuser for the first time today having started about 8.15am, I can feel my head starting to clear and I've been given a couple of paracetamol to soothe my smoking brain.

Today's main event was the 2nd infusion of  Thymoglobulin (the nasty) at 1.5.mg per kg of body weight - I currently weigh just under 80kgs. This drug is to supress or selectively kill my immune system so that the stem cells harvested from my sister will not be rejected when I get them on Monday. If the nasty didn't get it all today, well no biggie because there's always tomorrow and the day after that, but if my immune system hasn't been given a really really damn good kicking by close of business on Sunday I will have to take myself off to a corner to have a serious word with myself.

 As usual this was preceded by pills to prevent kidney or maybe gall stones, then anti-emetics, the Milk of magnesia stomach stuff (must get the name), another type of steroid tablets then a large syringe of methyl predisnolone liquid steroid and one of liquid antihistamine jacked straight into the Hickman line and up into the carotid artery.

The nasty doesn't look it, you kind of expect it come in one of those clear orange sleeves to protect it from sunlight (which would degrade all the evil) and for carbon dioxide type smoke to bubble off the top of it. But it's a  perfectly innocuous clear plastic Baxter saline baggie like all the others. In order to minimise the physiological impact it is delivered very slowly, so the normal clear infusion line is fitted to a reducer about midway along its' length which takes the bore of the tube right down. So whereas the longest time I've been hooked up before was four hours, the nasty is delivered into your system in very small continous flow over six hours, which makes it tricky to spot any incremental changes.

There was no clear point at which I went from thinking that I'd be OK to operate some heavy machinery today should it be called for, to whoah get that JCB away from me. I just kind of arrived at bug eyed and floaty without noticing it. At this point I'd pretty much discount Phenytoin from having been solely responsible for the sensation I've experienced during the previous infusions. From a lay (very) persons viewpoint I think it is the sheer quantity of the varied types of pharmaceuticals required to both protect and simultaneously destroy human tissue that causes the massive head rush that occurs during infusion. (duh)

As the next dose of nasty is only going to be 0.5 mg per kg stronger than today's jaunt I would say to anyone due for some of the same, don't worry at all -  it's a very heady intense experience rendered a bit dull by going on overlong. Be prepared to do a lot of staring at stuff, then rebooting only to start staring at something else. Music will relax you while this is going on, there was a point earlier this afternoon when I was having a good old bug eyed shout along to some decidedly non rocky stuff  - EBTG anyone ? and then Jeannette, I had a listen to our song and it made me cry just like it is now while I'm remembering crying while listening to our song.

Normal stupidity will be resumed as soon a pharmaceutically possible.

Breaking news Time 23.15 day T-3
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Didn't take long did it ?

One thing I can conditionally guarantee if you continue to read this blog is fairly frequent slapstick on my part.
Generally unintentional, but there you go - and here is what happened; nurse came to set up for 11pm infusion and was having a look at my Hickman Line which needed redressing as I had a shower before the nasty was started. On looking closer she said we cant do the infusion tonight because your line has started slipping out.

So when I had the shower it loosened the dressing to the point where the underside of the the line wasn't stuck to my skin and the weight of the tubes pulled the cleat around the top of the line free  when the infusion was unhitched after the nasty. So although all the nasty went in, the chemo can't continue until the Hickman is replaced which they think may be about 3am tmw - Friday.

A fairly common occurence apparently, but I still feel like a prize dong but all is not lost, because I'm having a consolation baggie of Aciclovir through a hand cannula at time of writing. YAY.