50 Shades of Pink..

Day Three: The Chemo Fairy arrives, bearing gifts

General status update:
Hair - still attached, gradually defrosting
Nausea - moderate, no actual vomiting
Hiccups - intermittent
Unexpectedness stonedness - lovely surprise! At no extra cost!
Anxiety level (0-10) - sorry, what?
State of mind: Totally chilled, man.
 

I’ve had the first dose of chemo, I’m still in one piece, and I didn’t make a break for the airport – possibly because I was escorted to the chemo ward, if not exactly under armed guard, but with my partner, R, on one side, and my little sister on the other, both staying very close indeed as they marched me briskly down the Fulham Palace Road towards Ward 6 East at Charing Cross Hospital yesterday morning. 

I did suggest that I could make a quick detour to Pret to get some provisions for later, and meet them at the hospital, but this met with a very dusty answer – R went for the sandwiches, while my sister continued marching me down the road, thus eliminating any possibility of me doing a runner. Still, it was worth a try. 

The chemo ward was a nice surprise – comfort, calm, delightful nursing staff AND free bananas, always a plus. I was hoping to avoid the whole Pink Thing throughout this process - it just doesn't do it for me, and it's not compulsory, after all.  

Yeah, right.

 

 

Not only is the cold cap - with which you try to prevent, or at least delay for a while, your hair falling out - a particularly acid shade of Day Glo Pink, but the Chemo Chair, in which you recline in some comfort as the toxins are pumped into your veins, is also pink. Mine was, anyway:

The bright pink machine to the left of the chair is where the cold cap - or Ice Cap, as my friend Amanda has rather more appropriately dubbed it - is plugged in, and freezes your head down to about -7 deg C.

THERE IS NO ESCAPING THE PINK.

The first few minutes were spent playing with the remote control for the chair, obviously: it arranges itself into a number of different positions, and is very comfortable indeed. I'd quite like one at home, although I wouldn't want to upset the Ektorp, which has very adequately fulfilled, for several years now, my overwhelming need to be horizontal whenever possible. 

My chemo nurse, the lovely and impressively efficient Sister Elena, gave us an impromptu, and fascinating, lecture on how Romania had suffered under the yoke of various pesky imperial powers over the last two millennia. She does not have a good word to say about the Ottomans and really, who can blame her? I would very much have liked her to continue, and indeed encouraged her vociferously, but Elena saw right through this stratagem and moved swiftly on to the arcana of chemo and the dreaded Ice Cap, which makes grown men cry.

The protocol was very strict, and timed down to the last minute, viz: 

1)    A 30 minute infusion, by my special request, of the strongest intravenous anti-emetic drug known to man, Fosapprepitant - they even named it after me, apparently. This is very expensive, and usually not administered unless you have proved you really, really need it by vomiting continuously for 24 hours or so after your first dose of chemo. 

This seemed to me an inherently unsatisfactory arrangement for those of us particularly prone to nausea, so last week I put it to Stan, my oncologist, that I had already put in the requisite vomiting hours during the extended, highly unpleasant allergic reactions I suffered after the administration of radioactive dyes for various scans. Happily Stan accepted this argument, and agreed to give me the good drugs up front.  

A fine man, Stan. 

2)    Application of the Ice Cap, and initial, preparatory freezing of the head, to stop the chemo going into the hair follicles and making all your hair fall out. I was warned this would be very painful for the first 15 minutes, but that if you can keep going, your head will eventually go numb, and the pain recede. Some women rip the cap off, screaming, after 5 minutes. Stan told me that most men don’t even get to the 5 minute mark, which made me laugh immoderately.  

3)    Half an hour later, after repeated checks that the correct drugs are being administered, the sequential infusion of the 3 chemo drugs that constitute the FEC chemo regimen: Fluorouracil, Epirubicin and Cyclophosphamide.

      -  Between them they provide a dizzying (literally) array of possible side effects: moderate-to-extreme nausea, hair loss, severe fatigue, anaemia, mouth infections, including both ulcers and thrush, stomach pains, heartburn and indigestion, both constipation AND diarrhoea (covering all bases), bladder infections, conjunctivitis, skin rashes and extreme sun sensitivity, taste changes (all food tastes the same, of cardboard), your nails going black, thrombosis, changes in heart and liver function (not entirely surprising, that one). Oh, and loss of fertility.

     But don't worry, most of those are only short term - except the possible death from any random infection you may acquire while your immune system is down. Longer term effects include increased risk of heart disease and, as a particularly ironic twist just for me, of developing Acute Myeloid Leukaemia. My original fear of chemo was acquired after my former husband died of its sister disease, Chronic Myeloid Leukaemia -

     I have a PICC (Peripherally Inserted Central Catheter) line already installed in my upper arm, there to remain for the next 5 months. It has a narrow tube inside, leading up through a vein to the top of my arm and thence to a rather bigger vein near my heart, where there is a much greater volume of blood into which to dilute the poison (chemo drugs are so toxic that if you insert them into the smaller veins in your arm they may fry them, not to put too fine a point on it).

 

     Oh, and you’re still wearing the Ice Cap while this is going on; it takes about an hour, and for in-flight entertainment they give you a short and terrifying DVD to watch about the dangers of Neutropenic Sepsis in days 7-10 of each chemo cycle: during this time you effectively have no immune system, because the chemo kills all the good blood cells as well as the bad ones. Should you acquire any kind of infection

     

     - going out during this period is really not recommended, and best practice would seem to be compulsory fumigation for your loved ones immediately after they walk in the door -

 

     and your temperature rise to 38 deg or above, you must leg it to the A&E with your 'I am a cancer patient' document and demand to be admitted for tests and in-patient treatment. If you don't do that, death may follow quite rapidly.

 

     I've bought a really, really good digital thermometer.  
 

4)    After the chemo has finished, you have to keep the Ice Cap on for another hour to continue protecting the hair follicles from the various poisons that are by now coursing happily around your bloodstream, looking for stray cancer cells – ‘circulating tumor cells’ – to destroy. Many cancer patients have some of those left, apparently, even after surgery – they will have split off from the primary tumour site at an early stage in the proceedings and, if you’re unlucky, they find another organ to colonise. I read somewhere recently that you should think of the cancer cells as terrorists, and the chemo drugs as the crack SAS sharpshooters sent in to hunt them down and kill them. 

Yes, that works for me.  

I often find it hard to remember that the real enemy is the cancer, not the chemo, something obviously evident to my oncologist. A couple of weeks ago, after what must for him have a been a rather trying meeting, during which I inflicted on poor Stan a spirited and extended interrogation on the effectiveness or otherwise of chemo, exact long-term survival rates and the risks of iatrogenic illness, he said rather sadly to me as I walked to the door “Please remember that we are trying to help you get better, Caroline”

5)    Then they let you go home.

 

It’s quite a long day, but it doesn’t hurt – apart from the cold cap, and I didn’t really mind that all. After 5 minutes of fairly severe pain, my head was frozen, and for the remaining two and a half hours it just felt not unpleasantly cool and tingly.

This is not a competition, but I must admit to feeling slightly smug that I tolerated the cold cap so well, and even quite enjoyed it; it certainly distracted me from the chemo. Anyway, I think that makes me officially the 27th hardest woman on the Charing Cross Hospital Chemo Ward, currently. Those who can tolerate the nausea without the Weapons Grade anti-emetic drugs constitute the elite top echelon, obvs.

And just to prove I am not exaggerating about the ice, look:

 

 

That was the inside of the Ice Cap, after the chemo, and below we see the outside of my very frozen head. Not a good look, but needs must..

 

 

 

The only occurrence of note during the infusion of the chemo was that as the final drug, Fluorouracil, was going in I suddenly started to feel very, very Spaced. Out. There was something in the pre-chemo info mentioning 'possible feelings of light-headedness', but they were being too modest: for me, it was definitely at the 'off your face' end of the 'feeling woozy' spectrum.

 

Hey, no one told me that chemo makes you STONED…

 

I giggled all the way home in the taxi, saying to my sister ‘Wow, I can’t believe I’ve actually had CHEMO’,

and she replied ‘Yeah, and I can’t believe you’ve had chemo and been so CHEERFUL about it’.

Unspoken between us lay the memory of how I had been bouncing off the walls during the previous few days, and the 2 previous months of blank refusal to participate, fervent protests, and intermittent threats to catch the next plane to Goa and cure my cancer by sitting under a palm tree, consuming health-giving vegetable curry. And mangoes. 

And so to bed, for a blessedly vomiting-free night. 

Thanks for the good drugs, Stan. I owe you one.


Addendum, 23/12/12: I've just re-read this for the first time since I published it, and feel I should make clear that the cold cap is NOT compulsory - in fact most people don't do it. At Charing Cross they have had good results with the cold cap for people on the FEC chemo regimen (although it doesn't work for everyone), my oncologist encouraged me to give it a go, and my chemo nurse seemed more than happy to administer it; I'm told, however, by my online chemo 'buddies', that at some hospitals the chemo nurses tend to discourage people from trying the cold cap, telling them it's a waste of time, because it means additional work for them - a patient who uses the cold cap is there for a couple of hours longer than one who doesn't, and there's a lot of faffing about fitting the cap, and operating the machine. For anyone reading this who is about to start chemo, and whose hospital in theory offers the cold cap, then don't let them put you off if you want to give it a go - it is your right to do so.