My life has taken on a strangely Groundhog Day-esque quality: I go to bed each night feeling relatively pleasant and calm and wake each morning lacking the urge to leap out of bed trilling:
Zip-A-Dee-Doo-Dah, Zip-A-Dee-Ay
My oh my what a wonderful day!
Mr Bluebird seems to be on vacation at the moment. Selfish bugger.
That’s not to say I don’t attain a level of tra la la joyfulness after an hour or so of waking, but certainly upon opening my eyes I feel exactly the same as I did the day before and the day before that. And it’s becoming tiresome.
My days working on archaeological digs in Bahrain (I used to live abroad, I used to have a life, boo hoo…Moving swiftly on) have come into their own. Digging deep has become a necessity; those reserves of positivity, optimism and contentment are somewhere close to the bedrock. Reliance on others, to offer me their generous one-way projections of admiration, praise, strength, affection and plenty of sunshine, is compulsory.
This sense of cranking through the emotional gears: shit-down-tired-anxious-uncomfortable-sorry for myself-not bad-relatively normal-optimistic-happy is becoming too familiar, with those first six being far better oiled than the last four. Got to be honest, those last four are getting a bit rusty. A good cup of coffee, some toast and marmite, nudge me towards the flatter plains of ‘not bad’. Ignoring the mirror, dressing up nicely, going for a long walk, enjoying good food and spending time with people who care, slowly tip the balance and propel me downhill to ‘optimistic’ at an ever-increasing pace. And with a bit more effort I make it to ‘happy’ most days. But my internal autonomous mood barometer is jammed and so I must rely on others to jolt me from ‘shit’ to ‘happy’ rather than get there by myself.
A brief aside…the time it takes to effect the transformation into Normal Person is disproportionate to the results. Though, for the purposes of research (on how to look like a Healthy Person), it did give me much pleasure to raid Boots last week in search of the definitive under-eye concealer. I’m not sure I discovered it, but I had a go, and it now takes me three times as long to do my makeup. I also found the loveliest mint green nail polish that I daren’t actually use, as my toenails are currently at risk of falling off under the new chemo regime (an ‘uncomfortable’ day if that happens). And I’m concerned that if I remove the old nail polish the rubbing motion might facilitate my toenails’ exodus from my toes. (This is how my mind currently works). On the other hand nothing is stopping me from using the two new chubby stick lip tints, in juicy hues: Red Sunrise and Fuchsia Libre which I am applying at every opportunity as the chemotherapy can do absolutely nothing to my lips, even if it can give me mouth ulcers.
Then there’s the matter of the wigs. I must confess to the tiniest bit of satisfaction in being able to change my look at the drop of a hairpiece. But one is starting to resemble doll’s hair as it becomes fuzzy, fluffy and matted. (A bit like my brain). Spray-in leave-on conditioner doesn’t do what it says on the tin because this is not hair as we know it. And I still have at least 12 weeks until my hair might want to pull its finger out and start doing its job again. Though I wonder if that’s optimistic, the way it’s still shedding whilst it’s re-growing; I now have hair of different lengths – short and tiny-tiny short – on my pillow each morning.
And then there’s my arms. They have been my nemesis the last few weeks. They remind me, with their nagging pain, that they are the entry points for the chemo. Cannula is my new word. I can now spell it properly and feel smugly proud that it is part of my repertoire of experiences and knowledge. (Tube into body to deliver or remove fluid). Each cycle of chemo, I have a cannula (cannula – it’s such a nice word) inserted into a vein in my forearm to deliver the drugs. The first four cycles of chemo hurt my veins. They’ll heal, but my arms were sore. In the scheme of things, this is not so bad. But if I lifted a bag of shopping it felt like my veins were being dragged down and ripped out. Minor inconvenience. I have cream to rub on them, but when I do, it makes me cry. With sadness for my arms; as they too are being affected by a lump in my breast.
Whilst I’m indulging in this bout of self pity, I shall share the fact that my ability to be a good parent is on occasion also affected. Depending on where I’m at in the chemo cycle, I find myself unable to offer the normal levels of support and interest that my offspring require. Partly because the drugs fuddle my brain – chemo brain – it’s very real, more of that later, and also because my depleted emotional reserves are pooling to act as my own little cheerleaders, to get me through the day. It’s not that I’m indifferent, just a bit numb. I can’t seem to ‘feel’ the requisite maternal emotions that were an inherent part of my makeup. They become temporarily anaethetised. Whilst the chemo robot is going about its business exterminating all cells – good, mummy and bad – I’m having to ride this particularly uncomfortable wave of detachment; distressing for the children and humiliating for me.
As for chemo brain, not to put too fine a point on it, it’s a mind fuck. It hit hard a few weeks ago. I woke up one morning (I just typed in ‘won’ – wishful thinking, not there yet, brain clearly still fuddled) to find myself wrapped in bubble wrap, looking out with my eyes, but detached from my brain. My mouth made noises and words came out, my limbs moved and got me from A to B, my head on the other hand was having time out. A thick layer of cotton wool insulated my brain and I passed a few days in a complete fug. I’d like to say it was a liberating experience, but that would be a lie. I found out it was Wednesday when I was convinced it was Tuesday. Tuesday just disappeared. How could that happen? I was robbed. I felt cheated.
As I did with the new cycle of chemo: a different type to the last four. The side effects won’t be as bad, I was told. That was a big, fat whopper. They were gruesome. I felt like a zombie looks –with limbs that acted autonomously and jerkily. This chemo led me to believe on Day One that I would be exempt from all side effects. Silly me! Day Two, my body hurt from top to toe, in joints and muscles I didn’t know I had. No position was comfortable and nothing took the pain away. I know I’m defeated when I can’t be bothered to get dressed, the lipsticks lie dormant and the wigs resemble Marie Antoinette’s head. My sense of humour went to Ibiza with Mr Bluebird. I needed people to chivvy me along, but didn’t want to talk to anyone or be sociable. It was my party and I’d cry if I want to. I felt like stamping my tingly foot in a pique of rage. I’d just spent nine weeks mastering the chemo side effects. I had them under control. And without the slightest warning they got worse. I just want to get on quietly with the task of Having Cancer but Looking Great without suffering for my art. Is that too much to ask?
Last week, if I’m honest, was an effort. I became an Angry Person and I know this because my family told me so. In an observational, jokey, yes, yes, we know you have cancer but can you try and be nice, some of the time, sort of way. Well…no, actually I couldn’t. The drugs bludgeoned me into submission and I was overwhelmed with feelings of melancholy that threatened to swamp me. I felt vulnerable, scared, angry and unwell. I couldn’t rationalise or put things into perspective or remember what the future held. My ability to be witty, to find humour where I shouldn’t, disappeared. I just felt terribly sad. Sad for my family who are having to go through this; sad for my children having to lose nearly a year of their lives and their freedom – to be children, to have no responsibility, to act their ages, to remain free from pain – for a little while longer; for my husband who is having to be superman, everything to all of us with no one to support him and tell him it’ll be alright; for me as I’ve discovered those I can count on and those I can’t, as I realise that life’s a lottery and nothing is certain. I wanted someone or something to blame but I couldn’t find a scapegoat and no one seemed to have the answer I wanted to hear. I wanted to analyse this ‘til the cows came home and equally I never wanted to have to think about it again. I wanted that luxury. I wanted everyone else’s life –to go to work, to the two weddings I’ve had to miss this summer, to the theatre, or on holiday. Not sit in a hospital three times a week. I wanted all this and all I did was cry.
That is how I felt for a bit and then the chemo mist lifted, the symptoms dissipated and normality resumed. My brain cleared, my energy levels rose, my ability to assimilate, organise, cope, and be a competent human being returned. With immense relief I could look after my children, run my home, cook, clean, organise the house, the decorators, our internet, TV and landline, argue about the best utilities package, get school uniforms and think clearly and calmly. And knowing I had such a brief window of lucid opportunity I went a bit mad and tried to cram as much as possible into a frustratingly short amount of time, regardless of the fact that by the end of each manic day I had a sore throat and was exhausted. It was worth it. If only because it reminded me that I still have the potential to be a capable person.
But with the impending chemo I’m back to waking each morning on the shit-down-tired-anxious treadmill of emotions. You think you’re putting on a brave face until the slightest throwaway remark takes the wind out of your sails. Knocks you for six. Throwaway remarks. So innocuous. So lethal. It’s always the smallest ones, made by those in the medical profession, that sting the most. ‘Baby’s small for dates,’ was one – (that’s going back some, but it was made when I was about 8 ¾ months pregnant. Not much I could do at that point. But it had me stressing that last week I can tell you. ‘Baby’s’ six foot one now…) And this time, as the nurse did the ultrasound scan under vastly different circumstances, she said without thinking, ‘hmm, it doesn’t seem any smaller, probably your hormones, but it looks bigger.’ She might as well have said, ‘this treatment you’re going through, total waste of time…’ One thoughtless comment and the tears oozed out, as I lay there at her mercy. It didn’t matter that as she measured she discovered the lump had actually shrunk, that she’d just been thinking out loud. That was the remark I honed in on. That was the one that stuck. And that was the one which tipped my fragile emotional state into the well of distress for the rest of the day.
So despite the fact that actually the chemotherapy is doing its job. And despite the fact that I’ve succeeded in requisitioning enough industrial strength painkillers to knock out a small army, or suppress the new chemo side effects, whichever takes my fancy. (And despite the fact that I feel strangely powerful being able to ask for any drug I need, never having used anything stronger than a paracetamol before). Despite the fact that I’m embarking on my sixth cycle of chemotherapy, and have only two left to go. Despite all these things, I still feel the same impending gloom, on waking, that I’ve felt week in, week out for many months now.
Zip-A-Dee-Doo-Dah, Zip-A-Dee-Ay
My oh my what a very long day
When is the sunshine heading my way?
Zip-A-Dee-Doo-Dah
Zip-A-Dee-Ay
Mr Groundhog’s on my shoulder.
It’s the truth
It’s actual.
It’s anything but satisfactual.
Zip-A-Dee-Doo-Dah
Zip-A-Dee-Ay
Tedious feeling
Very long day
daniellesimpson 