And then all my hair falls off

"And then all my clothes fall off..."

fig 34: in the best possible taste

Well OK my clothes stayed on but my hair fell off.

I've had the chemo drug Irinotecan before and while they say that hair loss is a possibility it's never been a problem for me before. Sure it thinned a little bit and grew back a bit haphazardly but my nice thick and quite long hair was still there.

Not this time. A couple of days after the Irinotecan infusion my scalp started to feel quite sore, like someone had been tugging at my hair. Soon as I touched it loads of strands just came away in my hand. And over the weekend it got worse, whole clumps start to come out and  by Monday morning I look like a cross between a mangy fox and the guy with the bad comb over in that Hamlet advert

fig 58: unhappiness is a drug called Irinotecan

Yes seriously that bad, I looked awful and I'm still shedding bits of hair everywhere like a moulting dog and I seriously hope these drugs are messing up the cancer as well as they're messing up my follicles.

So drastic times call for extreme measures and so I go into town, find an old fashioned stripey pole barbers shop run by a sixty odd year old guy whose Teasy-Weasy skills begin and end at "number two on the sides and half off the top" and ask him to cut the lot off. Which he does.

Excellent, now I look like a particularly scruffy toilet brush.

However after the purchase of a new razor and a few minutes scraping in the bathroom I now have a nice smooth head. And to be honest I don't think that it looks too bad Sure it's not good and I preferred having hair but it could be worse.

I could have that comb-over.

Infected

So after the news that the liver mets have ganged up on me and formed one big one the time comes to see if we can do something about it and quite frankly not a moment too soon. Over the past couple of weeks it's becoming increasingly painful and I've decided to step up to the opiate painkiller Tramadol more or less full time. Now Tramadol is at the, as one of my friends puts it, "opiates for girls" end of the spectrum of fluffy clouds and pink unicorns narcotics but even so it does mark a bit of a sea change in managing the disease.

But anyway onto chemotherapy. FOLFIRI this one is called and you may recall I've had it before and so last Wednesday late on in the day off I trek to the day unit at Addenbrookes and off we go. There's a bit of a false start when the nurse is convinced she's got the gripper needle in my port but as soon as she flushed it I got a searing pain so I'm convinced she's missed. But no worry, new needle is sorted out and off we go. So we thought.

Anyway everything is going peachy,, irinotecan goes in no problem, right up until the end of the calcuim folinate bit when I start to feel a bit cold and shivery. Now the air con in there can be a bit random so I just put my jacket on but I keep shivering.

And keep shivering.

After five minutes I'm shaking so hard I look like I'm having some sort of fit, my oxygen sats are down at 91% and my blood pressure is so high you could use it to operate hydraulic machinery. At this point the on call doctor is summoned who recognised me from the last set of oncology wobblyness and he thinks I'm having a reaction to the Irinotecan whereas the nurses think it's an infection. If it was a reaction it was certainly not like the one I had on Oxaliplatin which was quite a classic anaphylaxis one and personally I'm not convinced it is, especially when the usual hydrocortisone / chlorphenamine does diddly squat and my temperature is now heading north past 38.5C. It's not colinergic syndrome either which is one of the things Irinotecan can give you.

There's a bit of round the houses backstage and conversations with the on-call consultant and I'm asked if I want to carry on and then go home with a few antibiotics. Now the dragon's lair is quite literally in the middle of The Fens, at least 25 minutes from the nearest ambulance station* and a good hour from the hospital so I'm not exactly keen on going into neutropenic sepsis under those circumstances so after huge doses of IV antibiotics and blood cultures being taken it's decided I should stay the night at the Hotel Addenbrookes who, miracle of miracles, have a bed free!

Anyway to cut a long story short a couple of hours later I start to feel better and after a night of "rest" (only disturbed by every single beep, buzzer, bell and thing that goes "ping" known to medical science) I'm feeling a bit like my scaly green self again and after a thorough check over and even more antibiotics I'm hooked up to the 5FU pump and set loose into the world and everything proceeds as well as these things ever do (fatigue, nausea, constipation, evil humours of ye spleen, etc)

I did get my discharge notes through the post today and although the blood cultures weren't back the white blood cell count was elevated above normal and the doctor's summary was it was an infection of "unknown origin". If you remember back at the beginning of this we had a bit of a problem with the port and at the time the nurse was thinking that maybe as it hadn't been accessed in a month there may have been some infection in the line that's got dislodged but I suppose we will probably never know. Either way if it is an infection that's kind of good news as it means I'm not allergic to yet another chemotherapy agent and I can keep getting treated.

And finally with my public service hat on if you are a chemo patient reading this I know they tell you all about infection and to ring them if your temperature goes above 38 but do heed them. Mine went from "why am I a bit shivery" to "oh shit this is looking serious" in the matter of 30 minutes so please don't hang around and wait for it to get better, because odds on it won't.









* we tested this some years ago when me and my 16.2hh mare parted company at speed