The Crazy World Of Chemo

The Crazy World Of Chemo

But I don’t want to go among mad people,” Alice remarked. “Oh you can’t help that,” said the cat; “We’re all mad here.”

― Lewis Carroll, Alice in Wonderland

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Completely ridiculous….This is crazy…..Ha ha very funny…..hold on…..Seriously, your talking about me?

These were just a few thoughts racing through my (already spaced out) head when my consultant and oncologist both started using the word chemotherapy in reference to me. I didn’t feel ill. I didn’t look ill. The images  the word conjured up were not in the least bit assuring. Then, I only go and make it worse by ignoring the advice of new-best-friend-Breast-care-nurse and start googling it the next day and wonder why I am a puddle on the floor, jamming at the remote, searching for Sponge Bob and desperately looking for a tub of Ben and Jerry’s at 7am in the morning!

For the first couple of weeks I felt like an actress. This life wasn’t real. I was falling down that rabbit hole fast and resistance was not an option. However, once the lumpectomy had been done, and we waited to hear the results, I actually found myself wanting chemo (Now who was crazy?) I figured if I had youth on my side, wouldn’t it be safer to blast me with the whole bloody lot so we had crossed every last one of those dam T’s? If I had fallen this far down, I may as well go the whole course. I was anxious my team would decide against this form of treatment and vented my concerns in my diary. The madness of Wonderland had clearly struck hard and fast!

‘I feel angry that I was made to feel chemo was imperative. Ive been getting my head around it all and today I am practically told it’s all fine. It all went SO well and now I’m so confused and most of all, I am so fed up with all the waiting.’

– Diary, 4th January 2006

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Everyone is different. If I heard that one more time, but its true. Any other person diagnosed with the same cancer will have their own catalogue of treatment, their own personal puzzle of questions and answers. The treatment program is so unique  it becomes a special mark, a new stamp of identity, like a badge of membership into some elite club. I was quickly given my own program and as those six months stretched out in front of me (like some warped community service sentence) the realisation dawned; madness was compulsory. It was my ally. I was going to have to find my sense of humor and use it as my shield.

I’m afraid I can’t explain myself, sir. Because I am not myself, you see?”

― Lewis Carroll, Alice in Wonderland

After signing endless consent forms and totally surrendering control to the doctors, I tried to disregard the feelings of frustration and instead put complete trust in my team. The first day arrived, pretty much a month to the day post initial surgery;

‘I am force-feeding myself porridge with soya milk. It’s two degrees outside and dull and grey and inside my stomach is already a snow storm.’

– Diary entry 3rd February 2006

My own mad hatters tea party had begun. Every three weeks I would arrive on the day ward, chirpily order chips for lunch  (which I would lavishly eat in bed – oh the things I could get away with!) and have my bloods taken. While I suffered from first day nerves, Mum suffered from a mild personality disorder and went from Florence Nightingale to Hitler in the space of five minutes, marching down corridors, authoritatively demanding an ETA on the drugs, as if they were royalty. The wait after bloods to undergo the chemo was excruciating (but let’s face it, while the patient is sweetly hostessing the party, she needs an ally in tow who can throw their weight around as maître D! A job my mum did proudly!)

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My oncologist had warned me not to expect a thunder-clap; they wouldn’t start administering the drugs and the world would end, but there I was expecting a big black cloud to explode over my head while I held my breathe and did my best not to imitate Eeyore! There was, however, the cold cap to spur me on. Jockey Sam was in the room, riding ‘very-uncomfortable-hospital-bed’ with added bonus of freeze brain, and wearing a very fetching hospital gown. In a (rather fruitless) bid to save the luscious locks, my oncologist suggested I try the cold cap, a jockey looking hat which is designed to freeze your hair follicles during chemo, to prevent hair loss. He hinted it probably wouldn’t work, so what the hell, we gave it a try anyway. For the entertainment factor, it was a winner, for keeping my hair, a disaster (blog re hair loss to follow soon on the Beauty Despite Cancer website.)

‘So this is what it feels like having your head shoved in the freezer. I can’t  hear a dam thing and I’m constantly shouting. This treatment is going to make me deaf and bald!’

– Diary entry 3rd February 2006

I had two sets of drugs; FEC and Taxotere. The FEC was manually administered by angelic nurses, who would bring a literal suitcase of syringes (how very Bond!) and work through one at a time. It was time consuming to say the least. My ‘sober hangover’ would kick in day two post treatment and I would retreat on my very exclusive ‘hibernation weekends’ to my parents house, spend forty eight hours in a pair of comfy pjs in front of mindless TV and give in to the tidal wave of restlessness. With Worthers Original in one hand and a lovingly homemade juice in another, one to replace the metallic taste in my mouth with something sugary and one to replace missing minerals (chemo certainly has its own set of contradictions) I was all set! Mum reminisces how I would wheel spin out their gravel drive day four post chemo, as if nothing had happened, leaving her a mere shadow of her former self.

The first three sessions passed and I became  more familiar with the (once un fathomable) process and the gruelling three days post. After my third session I suffered a delay because my white blood cells were not high enough. We had been warned this may happen but the delay only resulted in intensifying my fear of needles, since for the following week I had to subject myself daily to self administered injections to raise my white cell count. Luckily this only happened once but self-harm now had a whole new meaning and since chemo my veins have never been the same. They took such a thrashing that gradually getting the line in became so traumatic, it involved mountains of hot water bottles, countless pillows and enough stress ball squeezing to rival Louis Walsh at the X Factor final! On several occasions Hitler (aka Mum) demanded a doctor to come and do it (oh the drama!) but I had chosen early on not to have a picc line because, on a  personal level, I didn’t want the constant reminder of chemo hanging over me on the days in between. It was bad enough having the added monthly injection of Zolidex (apparently protecting my ovaries required a needle the size of a canon) added to the list. Yet, my saving grace, that got me through those chemo sessions and helped me deal with resembling a veritable pin cushion, was what I fondly refer to as ‘my little blue pill’!

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Now, this had Eat Me written all over it! Though I’ve never been, shall we say, ‘rebellious’ enough to take drugs as part of my adolescence (I willingly admit I am a weed and prided myself on never getting so much as a penalty let alone detention, at school!)  I made up for it with the ‘pre med’ dosing of Valium, which, added to the array of anti sickness pills given post treatment, made me an official pill popper!  On a chemo Friday, at 8am, an hour before leaving the house, I would knock a Valium back and as the course neared its end, there were occasions I was so spaced out and relaxed I literally blanked out conversations, journeys to and from hospital and doing anything remotely human. I came down from my bedroom one Friday afternoon and innocently asked mum when we were leaving for the hospital! Just as Alice fell deeper into the chaos of Wonderland, I fell deeper too and just like the caterpillar smoking his pipe, I was enveloped in my very own blissful mindless mist!

‘She stretched herself up on tiptoe, and peeped over the edge of the mushroom, and her eyes immediately met those of a blue caterpillar, that was sitting on the top, with its arms folded, quietly smoking a long hookah and taking not the smallest notice of her or of anything else.’

– Lewis Carroll, Alice In Wonderland

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After eight sessions over twenty six weeks, I felt like a bald, baby faced Boudica! Hair loss, nausea, swollen parts of my body I didn’t even know existed, bloated stomach, constipation, insomnia and fatigue just some of the array of side effects. As crazy as it sounds, on hearing other stories,  I often think I got away lightly, but we all have our own tale to tell. All these little things contributed to my story, my climb and the diary I kept writing through it. It was hard, there were a couple of horrendous sessions where, like Alice, I was reduced to crying rivers of tears; of frustration, discomfort and sometimes just sheer fear, but what would throwing a tantrum do anyway? I realised early on, it was better to ride the wave because banging my fists on the floor wouldn’t change anything. So, mustering a degree of humor and an element of madness, we battle through, all in an attempt, really, at self-preservation. My moto became ‘Keep Buggering On’ because when the universe throws you a curveball you simply have to throw it right back!

“You’re mad, bonkers, completely off your head. But I’ll tell you a secret. All the best peopleare.”

― Lewis Carroll, Alice in Wonderland

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Me after my last chemo