It’s coming up for Breast Cancer Awareness Month. Four years ago I was commissioned to write a feature for Grazia Middle East about someone who had survived breast cancer. A friend of a friend agreed to be interviewed. She was candid and brave and whilst she was very open about her experience, I understand now I had absolutely no idea what she could possibly have gone through. The editor of the magazine at the time clearly had no idea either; a few days before the issue went to print she decided she didn’t want to include the feature after all. I suggested she told my interviewee herself as this wasn’t a feature about the latest celebrity gossip and quite possibly she’d need a very good excuse as to why, after asking this woman to tell us all about her harrowing experience for an issue focussing on Breast Cancer Awareness, she now wanted to pull it.
This editor was 30-something, very pretty but extremely superficial, with no experience of real life and a laugh that could stay a hyena at 50 paces. The glossies I worked on in the Middle East often seemed to have that certain type of brittle, youngish, single female at their helm. Fortunately, that October, Grazia’s editor buckled under the silent disapproval of her team. She didn’t make that call and ran the piece after all. I was glad. My interviewee said that it was the first time she’d written her whole experience down and had found it incredibly cathartic.
I never imagined that four years later I would be writing the pieces about me. I question daily how this could have happened. What did I do wrong? Why, why and why? And I am particularly frustrated, as the chemotherapy I have gone through has really affected my ability to write, focus or work. I look at simple copy and can’t seem to knuckle down to edit it. Work that I could get through in half an hour before my treatment started – or perhaps before my diagnosis was given – as after that I was severely distracted – is now insurmountable to me. I do realise that this will pass, that the chemotherapy affects the brain cells, and the body is currently in survival mode, coping with a day at a time and simple tasks. Editing travel pieces isn’t crucial, but it is my work and I want to do it. I just can’t.
So I read a lot. But having been a rapid reader, books now take forever. I can’t concentrate for long stretches. I drift around the house doing small tasks here and there. I panic if I’m faced with a list of ‘difficult’ responsibilities: filling out forms, changing the utility suppliers, recycling my rubbish. Actually, those last two? I have the measure of them now. Coming from the Middle East where recycling was non-existent it’s taken me several weeks to understand the bin and box system. But I’ve done it. I’m so proud of my recycling skills.
I graze the Daily Mail online. It’s my popcorn. I recently learnt that Euan Blair got married. In the scheme of things, this is not remotely interesting to me. But my stringy brain lapped it up. And then regurgitated it all in a dream. I was a spy. I had my laptop and in a spy-like way I was doing something of a spookish nature with it in the Blairs’ house. Tony (Blair, not Simpson) was being brisk and business-like and I was hovering in rooms making a record of things that were important. I wasn’t wearing my wig and Cherie was doing her hair in another room. I know this, because when we had to leave rapidly because they were onto us, I then had to return to do a wee. And retrieve my laptop that I’d left in a hurry. I ran into her bedroom and could hear her washing her hair in the bathroom. My mouse was missing from my laptop and I couldn’t leave without it, so I went into another room – another bedroom – and as luck would have it there it was attached to Cherie’s laptop. I then heard her go into the bedroom I’d just left and switch on her hairdryer. Tony (Blair’s) voice was approaching, so I had to run out the house clutching my laptop and the mouse. As I ran out, some men who were sitting on the wall said loudly enough for me to hear, ‘Do you think she’s a lesbian mum?’ Then I woke up, as I really did need that pee.
I’m aware my dream doesn’t require a Freudian interpretation, but I analysed it a little and concluded that Euan doesn’t look old enough to be getting married and it’s the first dream I’ve had in which I am me with cancer that I’ve remembered upon waking.
In order to avoid the lesbian mum look – not that I could care less if people think I’m a lesbian mum, but I’m not into the butch fuzzy look – I wear the wig most of the time. Except when I’m a spy in dreams. It seems to be convincing a few, as some women in town stopped me recently to lure me into the local hair salon to take advantage of their promotion. It doesn’t phase me anymore to explain that the hair isn’t mine as I’m having chemo. Unlike several weeks earlier when a nice lady in BHS asked me how I keep my hair so shiny and I was too embarrassed to go into the wig thing, so I lied and said that it was the John Frieda Frizz Ease Hair Serum, whilst my daughter said simultaneously it was the Herbal Essences Dazzling Shine Conditioner.
But several weeks have passed since then and now I’ve finished chemotherapy. Before that final session last week I felt ecstatic about the prospect of this. I got ready for my hospital trip with a light heart. Each chemo cycle sees two days of appointments. The first day is for blood tests and to see the doctor – to ensure I’m fit for chemo the following day. I was exuberant. I like going into London and having the opportunity to dress up. Sometimes I forget that this is not a jolly. That amnesia lasted until I saw the doctor. It was nothing particular she said, just the realisation that I was at the hospital because I have cancer; that this course of chemotherapy is damaging the nerve endings in my toes and fingers. That it might ease off when the chemo ends. But it might not. And no one knows what will happen one way or another. I was a bit gung-ho about the whole thing – let’s just get the last chemo out the way, I’ll be fine, I’m so brave, tra la la. But my mood plummeted the moment I left the hospital. Clearly my subconscious was having none of it. ‘Moron,’ it sneered, ‘who are you trying to kid?’
I took a trip to Topshop in Oxford Street to cheer myself up and sat in the café there. I had the urge to cry. It came from nowhere, but stemmed from worry about the nerves. What was the chemo doing to my body? Would I ever recover – not from the cancer – but from the chemo damage? I went home and the train was delayed because of a body on the line at Hendon. I wanted to cry a lot more. Then I argued with my family and found my excuse to cry and cry and cry.
And the next day I awoke exhausted. I tried to wiggle out of my last chemotherapy. My heart wasn’t in it. Will it really make any difference? But my doctor reassured me it would. I only had stage 1 of the side effects, she said kindly. I would be ok. They think. But can’t guarantee. So I had the treatment. The final one. Eventually, when they could find a vein that wanted to cooperate. The doctor said I should only have chemo in the left arm – as the cancer is in the right breast. (There is logic in this). The veins, like me, were fed up though. It took four attempts to find one that would accept the cannula. My arm resembled a pincushion. Now it’s a patchwork of brown and yellow hues. I was the last person to leave the chemo day unit that evening and not even a sticker to say I’d done my time. Just me and one nurse who was clearly anxious to get home.
As luck would have it, astonishingly, I’ve been let off the worse of the side effects this time. Maybe for good behaviour? Maybe my body’s just become more resilient! Side effects? Pah! I laugh in the face of side effects. It’s certainly all a bit random, what might happen each cycle. The one before this last was hard going. That may be an understatement. The pain and discomfort after that penultimate cycle were overwhelming. As I was going through it I mused that my expectations of those around me might just be unrealistic. I was also fed up as it was my daughter’s 18th birthday and I didn’t feel well. It wasn’t fair.
As I’ve never had to be the carer of a seriously ill family member before, it dawned on me that I was being unfair about what I wanted from those around me; that my requirements were arrogant or demanding. But a particularly brutal rush of self-pity hit me as physical pain racked my body. It was a day when the wigs and makeup stayed off and I looked like I’m ill. Not designed to make anyone around me particularly comfortable or happy. I wanted to go to bed, sleep till I felt better. Not interact or be nice or accommodating. Yet, perversely, I wanted everyone to be solicitous, to want to spend time with me, to offer me love, kindness and support. And to know instinctively that that was what I wanted, when I wanted it, without me spelling it out.
I didn’t want to be ignored when I was quiet, I didn’t intend to antagonise when I was irritable, and I didn’t mean to bore for England when I moaned about how I was feeling. I just wanted everyone to behave like the paid medical staff at the hospital. To smile, be kind and sympathetic and to understand that some of the time I just cannot cope. I know that everyone close is having to go through this with me. But they at least can escape to school, work, the pub, another country.
Three quarters of the time I can be normal about it all. I can. I think I can. I get up, make myself look presentable on the outside (I feel like a freak show on the inside, what with the wig, the effects of the chemo on my brain and body), put on a smile, and do an impersonation of someone who is capable, caring, in control. But 25% of the time, I find it becomes too much. The discomfort is too much, the side effects of either the chemo or the pills to counteract the chemo mess with my ability to cope at all. My body really hurt last time, the painkillers made me feel sick and drowsy, so negated their point, certainly in the daytime when I had to function and do the school run and there was no-one else around to take my role.
I know how tedious I have become in repeating how I feel. Again. And again. And. Again. Like a broken record. Each chemo cycle – eight chemo cycles spread over 20 weeks or so. That’s a lot of talk about Me and My Side Effects. I’m aware of that. I bore myself, so I can only imagine how dreary it is for the rest. But I’m pissed off. I want everyone to understand that and still be lovely to me. I want to be looked after when I feel like crap. I want to feel safe, not scared. And I want everyone else to know that if I have to live with this 24/7, it’s not the be-all and end-all to have to humour me, say an hour or two a day on the good days and substantially more on the four or five dreadful ones, each cycle, if it helps me feel a little bit better. I’m thinking it might have been useful to draw up an agreement on this – I’ll whinge for this amount of time if you comfort me for that amount of time – sort of thing.
Sympathy can be an effort. On those occasions when little Simpsons have been ill, I’m the last person to sit for hours playing Florence Nightingale. I do what has to be done and get on with chores and work. So multiply that by months, most of a year, in fact, and I can understand that playing doctors and nurses with me could pall. It’s a drag. And yet…I think this cancer malarkey deserves a bit of respect, a bit of understanding. It’s a long process, not an overnight thing. The treatment is harsh. The side effects are foul. And those of us who find ourselves in this situation feel vulnerable, down and a little bit terrified. The drugs pumping around inside create physical discomfort that is debilitating and cause emotional lows which wreak havoc on our capacity to cope in any rational way.
Of course now the chemo is finished I will start to feel better. And, most importantly, my hair will begin to grow again. I just can’t wait. I’m thinking blond crop, then hair clips, small bunches, a bob, streaks, ombré, choppy, curls, ooh the anticipation is beyond thrilling. This excites me more than anything else. As will being able to eat seafood again. Simple pleasures. Lovely and positive things to focus on. But when I feel lousy, even if I’d won a multi-million pound book deal with international film rights it would have diddly-squat impact on me. Shrouded in this cloak of discomfort and self-pity, I am a dismally negative pessimist.
Not all the time, I hasten to add. On occasion I am upbeat. I’d even go so far as to say happy. Those previous thoughts are just a glimpse of how I felt at a certain point during the chemo cycle. An earlier talk with the doctor, for example, gave me cause to rejoice and feel more positive than I’d done in ages – my treatment is apparently curative. Brilliant news. I was on a high. But the drugs are potent and when they engulf my body I can’t rationalise or be strong. My behaviour changes. I become angry and manic, self absorbed and upset. It’s not attractive and it’s not clever. So for that, I’m sorry.
This time however, the side effects have given me a break. But heaven forbid I should enjoy that. Absolutely not – just to keep me on my toes I’ve caught my first cold and sore throat in about 100 years. A cold’s a cold, and, to be honest, there’s something rather nice about having to bundle up and stay in bed. But I can’t indulge in slothness in the normal way, because on chemo something as simple as a cold could become a problem. Of the life-threatening variety. I’m watching out for the shivers or a fever so I don’t end up in A&E. I’m guzzling the blueberries, taking Vit C and Zinc pills, sucking Strepsils, gulping back throat linctuses and self medicating with paracetamol. It’s a full time occupation, staying well. Which made me question what my life has become?
If I’m not doing an extremely long school run – that’s what happens when you have to return to another country with no notice: local schools don’t have places – I’m still unpacking boxes. The trouble is, I’m not very efficient at the moment. I tend to get a bit sidetracked. I’ll wander into my study, decide to unpack a box, and realise I need a knife to open it. I make my way to the kitchen, then remember I have to put some washing in. I open the utility room door, but the washing is upstairs, and I need some breakfast first, so I go back into the kitchen and put some bread in the toaster. Whilst it’s toasting I amble back to my study to unpack that box. But I’ve forgotten the knife, so I tidy my desk and fill the bin with stuff I don’t need anymore. And now I need a bin bag for that overflowing bin, so I wander back to the kitchen and butter my toast and make a coffee. I sit down and turn on my laptop, go through Facebook/Twitter/Emails, steer clear of the Daily Mail – that’s for evenings only, open this blog to write, look around and remember I came in for a bin bag. But the dishwasher needs unloading, and that pile of dirty clothes needs to be brought downstairs, so I open the dishwasher, take out a plate, then wander upstairs for the dirty washing. I make my bed, open the curtains in my daughter’s bedroom, put on some makeup, come back down with my book and – I’ve forgotten the dirty washing. I can do this quite easily for a few hours. This is how I’ve become. Worst, I feel contentment as I drift. Until I remember that I didn’t used to be like this.
I went to the supermarket this morning, after the hour-long round trip to the new school had taken nearly two hours because a lorry had shed its load on the M1, and for a split second at the checkout, I reflected, dressed in the equivalent of outside pyjamas, with no makeup, bald, a nose to give Rudolph’s a run for its money, a wig that’s starting to imitate my head in its ability to shed, with no job, looking like I should receive benefits, that the sole purpose of my existence is now to drive 20 miles around the country lanes of Hertfordshire twice a day. On the plus side, being stuck in the traffic so long gave me the opportunity to hear several newsflashes about Asda’s faux pas with its Halloween Mental Patient Costume – a strait jacket covered in blood. I could go trick or treating in this outfit without my wig and resemble Ellis from One Flew Over the Cuckoo’s Nest.
Whilst I amuse myself with random silliness, I am waiting for my appointment with the surgeon to discuss my pending surgery. The choice is lumpectomy or mastectomy. I’m not thinking about it. At all. I’m just focusing on the new lingerie Santa Baby will be sending down the chimney this Christmas.
In the words of The Streets, I’ll ‘just try and stay positive’.
daniellesimpson 