The F*ck Cancer Diaries project

I’ve stalled on writing my first novel. I don’t know why; it’s not writer’s block, exactly, just that I haven’t felt like writing it for months. I got to about 8,000 words and then sort of mentally put it in a drawer.

It’s called ‘Alexander Black’s Peculiar Year’ and it’s about a slightly depressed, lonely man in his late 30s whose life is turning out to be rather mediocre. One cold grey January day he walks out of his job as the editor of a business magazine, after hearing a the voice of a woman in his head. Then the mysterious young woman to whom the voice belongs turns up on his doorstep and moves into his spare room… I can’t let you in on what happens after that, but I promise there will be a happy ending. I do love a happy ending.once upon a time

I’m still excited about the story; it already exists in its entirety in my head, and really it’s just a question of getting it on paper. But. It just doesn’t feel like the right time, and I was confused by this (and feeling lots of ‘shoulds’) until me and DH had a slightly tipsy Thirsty Thursday chat about it and he hit the nail on the head. ‘Pinchos,’ he said. ‘I just don’t think the novel is meant to be your first book. I think your cancer blogs need to be your first book.’

Whoah. That’s an idea. We talked about it some more. We may have gone a bit Los Angeles, as words like ‘closure’ and ‘therapy’ (for both of us) entered the conversation. Then DH said he’d like to include his thoughts and emotions too, about what it’s like being a husband and father of young children when your wife is diagnosed with advanced breast cancer. Writing isn’t really his thang, particularly not writing about, y’know, feelings and shit. So we agreed that he would talk and I would take notes (dusting off my journalism skills) and we would include his perspective on key moments in the story.

The first step was to put all my cancer blog posts into one big document. I’ve just double checked and they amount to pretty much 60,000 words. Seriously. That’s a lot of cancer chat. Basically, it’s book-length already. I started with a light edit. Including our names, and our children’s names, for instance, getting rid of hyperlinks and giving a little more useful explanation of the terms, process and treatments involved. I began adding in stuff that I hadn’t talked about at the time for whatever reason. Creating a little more of a coherent narrative. Although because I spent so much time writing and editing each post in the first place, each post already feels like a natural ‘chapter’ – they are all of similar length, and have a beginning, middle and end. There’s funny bits and tear-inducing bits and warm fuzzy bits and plenty of drama. Real life, in other words.

I cried a lot, re-reading all the posts through as one body of work. Even at this distance, it makes me feel quite bilious. There were entire bits of my ‘journey’ that I had completely forgotten about, and aspects of the treatment came back to me with a jolt. I guess the subconscious has to tuck some memories away at the back of the cupboard; remembering everything, all the time, would be too much to bear.

I started work on the project in the summer. The wonderfully long, sunny summer hols caused a hiatus. Then the start of term was a bit weird because me and DH (and no doubt our families) were quietly counting down to the three year anniversary of my diagnosis, and therefore my annual mammogram and check-up with my surgical consultant Tracey Irvine. Throughout the weeks leading up to 13 October, I was preoccupied, and sleepless, and tearful. I began, like this time last year, noticing miscellaneous aches and pains. I felt a constant, low-level fear. Because what if it’s not good news, and we have to go through it all again, probably with less positive outcomes? What if I didn’t get that three year tick in the box? What if we weren’t actually over the hump in the five year period beyond which I would generally be considered to have escaped another invitation to the cancer party?

In the event, all was well. Tracey poked and prodded and squeezed every inch of my boobs, glands and torso, sneaked me in for an immediate mammogram (always a delightful experience…) so I didn’t have to come back again a week later, got my bloods taken, and then looked me in the eye and said ‘You’re fine’. Huge relief, I can’t tell you. The mammogram results came back just three days later confirming that there was no sign of breast cancer. Thumbs up all round. Phew.

So I’m again ready to pick up the work in progress I think of as ‘The F*ck Cancer Diaries’, and make it happen. It’s shaping up as half-memoir, half actually-quite-useful book for the growing number of relatively young women diagnosed with breast cancer every year, and their partners and families. One of our friends suggested we call it ‘Walking Two Abreast’, which is a marvellous pun.  I’ve had a huge volume of very positive comments over the past three years about the way I have written about my experiences, and I really hope the book is a worthwhile endeavour. A goer, as it were.

But I don’t know the first thing about book publishing, and I need your help and support, please. I would like, very much, your comments here on what you think of the idea so far. Is it a good one? Would you read it? What else do you think I might include? Know any agents or publishers? Have any advice on self-publishing? That sort of thing. If you could pass on the link to this post to anyone you know who might have thoughts or ideas or contacts, I would be terribly grateful. Merci beaucoup.

Because this feels like the right thing to be doing, now. The thing I need to do to finally close this extraordinary chapter, and move on to the next bit of the story. And one of those happy endings I am so very fond of.

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The Saatchi Bill: helping doctors to innovate

I was at the Houses of Parliament last week. In the House of Lords, to be exact. No, I haven’t yet received a peerage for services to the wine industry: I was honoured to be invited as a guest of Lord Saatchi (Maurice, the ad guy with the cool big specs, not his brother) to launch his Medical Innovation Bill, which is currently, and unusually, making its passage through the Lords and the Commons simultaneously.

Lord Saatchi and his wife Josephine, who died in June 2011.

Lord Saatchi and his wife Josephine, who died in 2011.

Instead of a big press conference, Saatchi and his team decided to hold an intimate event for 20 selected bloggers in one of the committee rooms of this ancient, beautiful and imposing rabbit warren of a building. We were asked because Lord Saatchi wants to spread the message far and wide about how important the Medical Innovation Bill is.

So why is he so passionate about it? Well, two years ago, his wife Josephine died from ovarian cancer. Overwhelmed by grief, and shocked by how little progress had been made in the effective treatment of ‘rare’ cancers in the past 40 years, he was moved to act. His research showed that many doctors are held back from doing everything they possibly can to help – from trying new combinations or doses of drugs, new treatments, innovative surgery, or simply doing nothing (because they know the standard ‘treatment pathway’ would not work in a particular case) – because of fear. Fear of litigation, and feel of ridicule by their colleagues. It’s crazy, isn’t it? So he has worked with parliamentary colleagues and the medical profession to draft the Medical Innovation Bill. The aim of the Bill is to ultimately save lives by encouraging doctors to innovate and find new ways of treating disease – not just cancer, but all diseases and conditions.

Most of us in the room had first or second hand experiences of cancer or MS. We were all moved hearing Lord Saatchi talk about his and Josephine’s experiences: his story of  the barbaric, medieval, degrading treatment Josephine had had to endure before she died was devastating, and resonated strongly. I understood a little of what he was talking about: I nearly died from a common cold after my first chemo because it poisons you and wipes out your immune system, had black and blue arms that were worse than a heroin addict’s some weeks from all the needles and canulas, and after the surgery my remaining breast tissue and skin was nuked by radiotherapy. As Saatchi said, hair loss is sort of the good news.

But my story was different: I knew from the outset that despite the advanced stage of the cancer, my prospects were excellent. I was ‘lucky’ enough to have had one of the ‘Big Four’ cancers where survival rates are high and treatment is evolving rapidly with successful outcomes. I also had a caring, inspired team that wasn’t afraid to innovate, putting me on a drugs trial and taking a new post-chemo surgical approach that meant I avoided a full mastectomy. Most people with cancer – and it will touch all of us at some point in our lives, either directly or through someone we love – are not so fortunate.

There is a lot of talk about breakthroughs in cancer treatment, and other diseases. Breast cancer and leukemia, for instance, are no longer a death sentence. But in most cancers, too little progress has been made in recent decades, and the status quo simply isn’t working. For many cancers, there are simply no treatments other than surgery: no effective chemotherapy, no drugs, nothing. For others, there have been no advances for 30 or 40 years. Sadly, there is a commercial imperative at work here: if there’s no money to be made from a treatment, drugs companies won’t invest millions of pounds and many years in the research and development required to bring a new drug to market.

We also heard from Prof. Andy Hall, a researcher specialising in blood cancers, who explained how innovation has worked in the past in finding new treatments for cancers, and why, in our increasingly litigious society, innovation is getting harder.

Finally, we listened to the almost unbearable story of Debbie Binner, whose teenage daughter Chloe died of a rare cancer in February this year. There was a drug that would have treated her rare sarcoma, which ‘only’ 35 young teenagers a year have in the UK, but it had been licensed as an (ineffective) treatment for lung cancer, not her condition, and proved impossible to get hold of until it was simply too late. Can you imagine how hard Debbie fought for her daughter’s team to prescribe the drug, take a risk, do things differently? It might have saved her life. Most of us in the room were parents and you could almost feel the collective, heartbreaking thought: how do you cope, when a child dies? How do you go on? But she has, and in Chloe’s memory she is supporting Lord Saatchi in his fight to give doctors, patients and judges greater clarity as to what is careful and sensible innovation (and also, of course, what is negligent and dangerous clinical practice).

Saatchi believes the Bill will allow good doctors who have the best interests of patients at heart to deviate from standard procedures and innovate safety and within the protection of the law, with patients’ consent. Although consensus from the patient’s multidisciplinary team will be an absolute requirement in advance of any innovative approach being taken, it’s true that often, innovation comes from the brilliant idea of one clinician.

The doctor at Barts, for example, Geoffrey Keynes, who refused to do what surgeons across the US and UK were doing with breast cancer – the Halsted method, whereby women automatically faced a double mastectomy and the removal of all tissue from the shoulder, to the chest wall and ribs – and instead removed only the tumour and followed it with radiotherapy. He was ridiculed, and his ‘lumpectomy’ was used as a term of derision. Today, it’s standard procedure. Penicillin is another example: it came straight from the lab to save soldiers fighting the desert campaign of WWII, with no clear evidence base of years of trials. It was a new treatment, and it saved men who would previously have died from their infections. That’s innovation. Today, they’d probably be sued.

The Medical Innovation Bill gets its second reading in the Commons on 18 October, proposed by Michael Ellis MP. You can read more about it here:

If you think it’s as important as I do, please write to your MP and encourage them to vote for the Medical Innovation Bill. The louder people shout, the harder it will be for the Government to brush the Bill aside. You can also follow @SaatchiBill and #SaatchiBill on Twitter to keep up to date with the Bill’s progress.

This is not a party political issue: it doesn’t matter whether you usually vote red, blue, yellow, or green. It’s going to be a long haul, and I will probably be banging on about this again. Let’s hope Lord Saatchi’s right, as he told us last week: ‘The Bill will not cure cancer – no Act of Parliament can do that – but it will encourage the man or woman who will cure cancer’.

You may also like to read some more perspectives on the launch of the Bill, from some of the other lovely bloggers at the event:

Thinly Spread

Vevivos

Tired Mummy of Two 

I Heart Motherhood

My Life, My Son, My Way

Mummy Central 

Alexander Residence 

Keynko

 

 

 

 

 

Now We Are Forty…

It was my fortieth birthday a couple of weeks ago. FORTY, for fuck’s sake! I am now a 40 year old woman! How on earth did that happen?

Oddly, I wasn’t in the least bit concerned in the run up to the day. No denial, no keeping it quiet, no plans to pretend, like the mum in Judd Apatow’s hilarious movie ‘This Is 40’, that I will remain 39 forever, no telling people not to make a fuss. That’s not my style: I like MAXIMUM fuss to be made of me on my birthday, and always make a fuss of people I love on theirs.  Any excuse for champagne, frankly. No, I embraced it utterly, and planned a big grown-up garden party.

As the Significant Birthday approached, people kept saying things along the lines of: ‘Ooh, the big Four-Oh, how are you feeling about it?!’ and I was then able to spout my ‘Theory of Being a Forty-Year-Old Woman in 2013’. Which goes something like this. There has never, in human history, been a better time to be a woman. There’s still a long way to go – there’s appallingly bad shit and inequality and unfairness and misogyny and sexism still going on around the world to women and girls – but nevertheless. In particular, there has probably never been a better time to be a woman over 40. Or an Actual Grown-Up, as I now think of what used to be called Middle Age.

At the RA on the Big Day

At the RA on the Big Day

Just look around you, at the musicians and actors and models, the business leaders and entrepreneurs, the writers, journalists, politicians and sportspeople. There are an awful lot of Actual Grown-Up Women among them. Some of the coolest, sexiest people in the world are now over 40. Kylie’s 45 (KYLIE!), and Madonna was 55 last week, for goodness’ sake. Jennifer Aniston is 44; Samantha Cameron and Susanna Reid are both 42. Paula Radcliffe was born the same year as me. Karren Brady is 44, and JK Rowling is 48. Cameron Diaz is a year older than me. Yeah, really! The original supermodels are all in their mid-40s. Women aged over 40 are at the top of their game: mature, confident in their skin, look frickin’ amazing, and have an attractive sheen of experience and wisdom.

In short, when I think of myself as a 40-year-old woman, I don’t think ‘Shit! I’m over the hill! I’ve done nothing with my life! In my advanced years I must cut my hair unflatteringly short and wear crap clothes and ugly shoes and no make-up and inexorably trudge down the path to old age and incontinence and death!’ Rather, I think this: Wow. This is totally going to be the best decade ever! This is the decade when I will accomplish my dreams and achieve my potential. Now my children are no longer tiny and totally dependent on me, now I have something approaching a life of my own again, it’s going to be amazing. This is where I get to be utterly myself, where there are no barriers. apart from my own thoughts, to business success, finishing that novel, being thin, being comfortably-off, being happy, and being fit and healthy.

That’s the most personal thing, right there. The healthy bit. My thirties weren’t all they were cracked up to be. Apart from giving birth to my two darling children, I was basically stressed, broke, anxious, depressed or having panic attacks for much of my thirties (and twenties, if we’re being honest). And then my late thirties were spectacularly crap thanks to my Cancer Experience. You know how much I hate the language of cancer – the battling, struggling, fighting, surviving stuff – but as I approached my 40th birthday I actually felt euphoric about having reached this ripe old age because (and you may never hear me use this word again) I survived. I got this far. And so my party was a chance to say thank you to (almost) all the people who supported me and DH through it, and to celebrate having actually got to 40, which looked like a distinctly shaky possibility three years ago when I was diagnosed. IMG_3210

Still, I do wonder when I’m going to feel grown-up. Does that ever happen? When I was younger, my mum would say she still felt 18, and I never got what she meant, until recently when I realised that in my head I am basically still 22 and feel no more emotionally mature, stable, sophisticated or cool than Taylor Swift. I am hoping that at some point I will know my limit on white wine, stop drunk texting and tweeting, re-heel my shoes on time, learn to play golf, or tennis, own a fancypants coffee machine, have regular manicures, and never run out of bog roll or milk. That time is not now.

My birthday itself was perfect: the Royal Academy Summer Exhibition (my annual art indulgence) with DH and the kiddies, and then champagne afternoon tea at my new favourite restaurant, Balthazar, with the surprise addition of my mummy, which reduced me to tears. DH bought me a stunning grey snakeskin Michael Kors handbag and, from the kiddies, a gorgeous gold ‘Pinchy’ name necklace, made for me by a stroppy little Polish man in Hatton Garden (His phone call alerting DH to the completion of the commission was a terse ‘Hello? Pinchy is Ready’. Dial tone). Then a takeaway and more champagne at home with our best friends, which accidentally got a bit drunken. Then an indulgent lunch the next day at Le Gavroche with my wonderful parents, and sis and brother-in-law, who gave me the most beautiful gold bracelet. Mama and Pops had created an amazingly nostalgic Aspinal leather photo album with photos of me from newborn to now, embossed with ‘Maja – the first 40 years’ on the front. (Mummy said she was going to put 1973-2013 and then realised that it would look like I had actually died…) IMG_3188

So I didn’t really need the party I had planned. But what a party it was. We cunningly shipped the smalls off to our dear friends’ house with an all-night babysitter so all the kiddies could have fun together and all the adults could stay at ours and have a lie-in the next morning.  We spent all day dressing the garden: hay bales covered with colourful fleeces, Chinese lanterns in sorbet shades, fairy lights, and bunting. At 8pm, guests started arriving and under the gazebo there was live music – a guy and a guitar, and his girlfriend singing Kings of Leon tracks beautifully – to accompany prosecco, and canapes made by my mummy and best friend. We even had catering – a deliciously meaty South African barbecue – and then the party really got started, with DH manning the ‘Marisco Disco’ (ie a playlist on my iPad attached to a proper sound system kindly loaned to us for the occasion).

Everyone had dressed up. The wine flowed. I danced on the patio under the fairy lights all night, with my best friends and my family (my mum and dad have got some stamina, I can tell you). I can’t remember the last time I did that. Being whirled around by gorgeous boys for hours on end was quite marvellous. I lost count of the number of times we had Robin Thicke’s ‘Blurred Lines’ on, with 46 people shouting ‘You know you want it, you’re a GOOD GIRL’ repeatedly. My sister (dressed as Chris Lowe from the Pet Shop Boys circa 1988, just because she knew I would love it) and brother-in-law presented my birthday cake: delicious chocolate brownies in the shape of the number 40, each with a candle. One of my oldest school friends had flown over from her home in Malaysia just for the weekend, just for me. Another lovely friend came straight from his flight from Ireland and arrived at 11.30pm to share my celebration. Almost everyone had booked a hotel room, so they could fully commit to partying. I was spoiled with gifts of every major champagne label under the sun, and some beautiful jewellery, and compliments on my last-minute dress, and many, many hugs and kisses. The old Salisbury gang was back together for the first time in years. My uni chums were there, and my mummy friends. Everyone had a ball.

The last guests left or went to bed at 4am. (The neighbours kindly asked us to take the music inside at 1am.) And when everyone else had gone, I stayed up for a bit by myself to savour it all and quietly open a couple of pressies. To soak up the last vestige of party atmosphere, and cement my memories. My jaws ached from smiling. My knees and toes were killing me from dancing in heels for seven hours. I’ll never forget it. It was perfect. IMG_3452

Being born in 1973, we’ve had a few 40th celebrations over the past year, and more special ones to come in the next couple of years among my closest friends. It does feel like a really significant birthday, a real milestone or marker in one’s life. Some people dread being 40 as it approaches, and I totally get that. It’s a natural trigger for quite a lot of self-examination and life assessment. I say: embrace it. Enjoy it. Celebrate it. Mark it, as noisily as possible with as many people as possible and as much champagne as possible. And when the hangover has abated, and life, somewhat surprisingly, gets back to normal, get on with the business of living, and loving, and start planning your 50th birthday celebration. I’m thinking Vegas…

The perfect age

I have a confession to make: I’m not really a baby person. By which I mean, I’m not one of those mummies who absolutely adores the newborn and tiny baby phase. I never revelled in that intimate milky haze. I love my children fiercely, and I would have killed for them the moment they arrived in my arms. But their babyhood was also an extended period of low-level panic: total responsibility for a tiny, vulnerable, helpless human being, who I struggled to understand and who couldn’t tell me what they really needed. It was two years of guesswork and feeling like I was getting it wrong, both times.

My tiny vampire and teddy bear.

My tiny vampire and teddy bear.

I regret, looking back, that I didn’t relax a bit, go with the flow and enjoy them more. It’s a cliche because it’s so true: they really aren’t babies for long, and it’s a very precious time. But we are are who we are, and some of us are brilliant with babies, and some of us are not. I was bloody good at giving birth, I have to say, but doing a good job of an actual miniature human being? Not so much. For me, it was a total headfuck. I wish it had not been so, but there we are. The moment DS was born, I knew we were done, our family was complete, and I have never had even a twinge of broody desire (luckily, since my ovaries were almost certainly nuked by the chemo two years ago) to have another baby.

Now, though, is a different pot of crustaceans altogether. I had an inkling, when DD started school nearly three years ago (OMG, where has that gone?!) that I was entering a phase of motherhood that I would be a darn sight better at. That would come more naturally to me. That I could really enjoy. Before having children, I always imagined myself with primary school-age kiddies. And lo: I have discovered that I really love being a school mom. Happily, I had two summer babies so this bit came round relatively quickly. DD is coming to the end of Year 2 and DS is about to finish reception, they are about to be seven and five, and I would bottle them, right now.

They are delightful, and I want this summer to go on for ever. I always want to watch them bouncing on their trampoline and inventing silly new jumps that reduce them to a heap of hiccupy hysterics. I want them to always be as funny and sweet and cuddly and delicious and adorable as they are right now. They don’t seem to have been particularly scarred by having a rubbish mummy early in their lives: they are disarmingly affectionate – it’s like they are teaching me new ways of loving and being loved and accepting love, every day. Every day, they break down my barriers and melt my cautious heart. Their kisses and cuddles are offered and demanded and given so freely. They are fearless with their love, still, and it is a total joy and privilege to be with them, most of the time. They are well-mannered, rarely horrifyingly naughty, and our minor spats are usually because they are so in the moment with what they are doing, they’ve tuned me out. Which is fair enough, really: pirates don’t need to put sensible shoes on.

I am pretty much the opposite of a ‘helicopter parent’ – I’m more of a stealth bomber, hovering out of sight in case of extreme crisis, and I encourage them to be independent and to make their own fun. And occasionally I hear a bored whine, and it is then that I know the magic is about to happen: in the space where they are a bit bored, their most exciting and imaginative new games and activities flourish, quite without my interference. They play beautifully together, and are completely in love with each other: DD is still unselfconscious enough to enjoy playing with her little brother almost more than anyone else, although he is starting to wind her up on occasion, being his father’s son. I avoid getting involved in their disagreements as far as possible (unless there is blood, obviously) not just because I can’t be arsed/am doing laundry/have a rather tricky level of Candy Crush to conquer, but because they are quite capable of resolving their differences, compromising and negotiating. In fact, I reckon they sign the peace treaty (ie agree on a movie or a game or who’s gonna wear the Cat in the Hat outfit) a lot quicker when I’m not doing a Ban Ki-moon act.

Every day, I take joy in the little acts of care for them. I take satisfaction from washing, ironing and putting out their uniform every night. I make their packed lunches with love (all those cute little Tupperware boxes!). I love making their beds in the morning, opening their curtains and letting the day into their room. I love doing the school run. They are so happy at our wonderful school, and doing so well. I love the little facts they come home with every night, and their excited bulletins about the next day. We are lucky that our homework burden is light, so after school they are free to ride their bikes and just be children. Apart from non-negotiable swimming lessons on a Monday after school, we don’t have any other scheduled activities at the moment. They are happy enough, stimulated enough, and tired enough as it is. Yesterday, we had no playdates planned, so we just hung out in the garden, the three of us, eating lollies, reading Grazia (me) and playing some sort of Charlie and the Chocolate Factory/Despicable Me mash-up (the smalls), whose rules I didn’t quite understand.

And the next stage is letting them teach me not only about love, but also about play. They are old enough, now, to play a rudimentary game of cricket, football or catch in the garden. They are old enough to write the clues for a treasure hunt. They are old enough to go for long adventures in the woods. They are old enough to make quite complex structures out of Lego or clay. They are old enough to try magic tricks and card games. I’ve never really enjoyed stuff like role play (no sniggering at the back), and puzzles, but the stuff they are into now is, well, more interesting. Take Harry Potter, who features large in our lives at the moment. IMG_2418They are mesmerised by the first three movies. I’m reading the first book to them at bedtime and they are properly enthralled. I think, to be honest, that that was the moment being a parent first made complete, joyful sense to me: when I started reading them books I love and saw the wonder in their faces. (Doing Hagrid’s West Country accent is no problem, as a Salisbury girl, but my Professor McGonagall is appalling). DH took great joy in whittling them a real wooden wand so they could properly be Harry and Hermione. They both saved up for a toy owl, so they have their own Hedwigs. I spent hours following a YouTube tutorial to make them Golden Snitches. DS is mooting a trip to Harry Potter Studios for his fifth birthday.

They want me to join in their play more than I do, and are surprised and delighted when I stop the chores and muck in. DD’s face when I actually got on the trampoline the other day and showed her how to do a pike was a picture – she lit up, which was worth the alarm caused to my pelvic floor. I plan to say yes to their games a lot more, this summer. Yes to water fights! Yes to races! Yes to hide and seek! IMG_2454

Because much as baby days were over quickly, this golden bit of my darlings’ childhood is rushing past. And this time I really do mind. I am already having conversations with friends about what age our girls will be when we allow them into town alone and let them have a mobile phone (the consensus seems to be between 11 and 12. That’s potentially only four years until the Letting Go starts…) It’s not going to be long before we have teenage strops and sulks and they don’t want anything to do with each other or us (but still desperately NEED us to get them, and love them unconditionally – I anticipate another challenging period of communication equal to having a newborn!).

In the meantime, for the first time in my almost-seven years as a mother, I kind of feel like I am doing a good enough job. I don’t always get it right. For every day that I’m calm, cheerful and easy to be around, there’s another day when I’m preoccupied, knackered and impatient. I really appreciate the silence in my home office while they are at school, and I rejoice, some days, when it’s time for the bath taps to go on and mummy’s little helper is chilling in the fridge. But I also rejoice on Saturday nights in, when they are allowed to stay up to watch trashy talent show telly with us, and we get through bags of tortilla chips and houmous together and discuss which mentor or judge we’d like. When we were in Rome for DH’s 40th at Easter, after the first two days we were missing the kiddies terribly and planning our next trip to the Eternal City with them in tow, and a bigger icecream budget. They are wonderful little humans, and great company. And, pelvic floor notwithstanding, I will be doing the Bottom Jump on the trampoline with them in a matter of hours. Lucky old me.

The rebranding of Pinchy

I did something small yesterday – tiny, really – that has a much larger significance. I removed two little words from my Twitter profile. So what? you may be asking, quite reasonably. Well, the two little words were ”F*cked Cancer’.

It just felt right to let them go. Or maybe it stopped feeling right to include them. I only have 140 characters to sum myself up for my trusty band of followers, and spending ten per cent of that on a disease I had a couple of years ago (I’ll be three years past diagnosis this October) suddenly seemed…what? Irrelevant? Awkward? Embarrassing? Like I was hanging onto something in the past and continuing to let it define me? Maybe even a little bit David Brent going back to Wernham Hogg after he’d been sacked. Sometimes it’s just time to move on.

This isn’t to say, of course, that I will ever forget about having cancer. The day I was diagnosed was, and will always be, as defining a moment in my life as getting married and giving birth to my two babies, in that it changed everything. There are moments in one’s life when it really does seem, quite tangibly, that you are one person one day, and a completely different person the next.

It's all about these little guys...

It’s all about these little guys…

Or, perhaps, that you see the world differently as one chapter closes and another opens. Like you are breathing a subtly different air; like the appearance of everything has been put through an Instagram filter. Marriage, birth, death, diagnosis, divorce, and lottery wins: they split your life into ‘before’ and ‘after’.

So pre-October 2010 was BC: Before Cancer, and everything after 13 October was AD: After Diagnosis. That sounds a little simplistic, but that’s how it was. One day, life is a certain way. The next day, your previous taken-for-granted existence has disappeared, forever.

I was accidentally reading some emails from the BC-AD period this week – you know when you press a button on Outlook and you’re suddenly looking at your oldest emails, rather than the newest ones? – and it was plain weird. In the weeks leading up to The Big Day, it’s all chat, jokes and making arrangements with friends, liaising with existing clients on projects, and setting up meetings with new clients. I marvelled at the normality of it. The innocence.

From 14 October, the emails have a different texture and tone. Cancelling meetings and dates, and explaining why. Announcing, carefully, my news. Asking for help and support and advice. I was astonished at my calmness, my clarity, my eloquence, the lack of panic or distress in my words. But it’s really obvious that nowhere, in not one single email, do I say the word ‘cancer’: it was still too raw, too powerful, too shocking.

My 40 year old boy on his birthday trip to Roma.

My 40 year old boy on his birthday trip to Roma.

I’ve said before that I don’t consider the day I was diagnosed to be the worst day of my life. It was probably up there for DH, my sister, and my parents, but not for me. And I’ve said before, also, that I wouldn’t have not gone through it: I don’t want to go through chemo again, ta, but I honestly feel it was a critical experience, a positive turning point, and full of important lessons. I’m still processing all of that – it takes time to become someone new, or rather, to slough off the crap that has accumulated over the years and allow yourself, with love and approval, to just be yourself.

Rome and Cosmopolitans: what's not to like?

Rome and Cosmopolitans: what’s not to like?

Nevertheless, I have never defined myself as a cancer patient, sufferer, victim or survivor. It’s just something that happened to me, it’s not everything I am, by a long way (although I know I do go on about it rather a lot in this blog…) And it’s time, now my scars are silvering and my hair is finally thick and growing, to move forward. I’ll still nod respectfully to  cancer, of course: it will never not be a significant part of my life and history. I honour its memory. But it’s not part of my present or, god willing, my future.

And I don’t want it to be one of my ‘things’ any more. My adorable children, their education, the marvels and bafflements of love, books, writing, cats, trees, good light, cooking and eating good food, good wine, good company, the pop music of the late 80s and early 90s, quantum physics, the mysteries of the universe, complementary therapy, Italy (we had an amazing time in Rome for DH’s 40th in April…), London, social media, art, stripey tops, pretty necklaces, spa days, heels, being a red-headed Leo – all of these will continue to be my ‘things’. Cancer doesn’t belong  in that rich, colourful tapestry any more. There will always be a bit of me that’s ‘the girl who f*cked cancer’, but it’s rapidly becoming a 1970s-orange-tinted Polaroid.

Someone I adore once told me I had ‘f*cked cancer with dignity and courage’. I look back on that brief interlude with my head held high, but only for a moment. I turn round to face today, and tomorrow, and the sun on this golden afternoon is warm on my face, and I am smiling, and the view is really quite something.

Little Big Things

I was fiddling about on Twitter recently (as is my wont) when someone from AXA PPP Healthcare asked what were the ‘little big things’ that made a difference while I was going through cancer treatment. The insurance company hosts a pinboard of hints, tips and suggestions on its website from people who have gone through treatment, and their carers.

This got me thinking. I didn’t think much about it at the time, you see. I was just getting through it, in my little bubble. Oddly enough, it’s only now, a full year after my final surgery, and two years after my last chemo in March 2011, that I can look some aspects of being diagnosed with and treated for breast cancer in the eye. There’s just enough distance, now, for me to not simply ‘keep buggering on’ but to think ‘OMFG, that was absolute hell. I had CANCER, for goodness’ sake! I’ve had chemotherapy! My personal health nightmare came true!’ And then I have to lie down for a little bit with a cup of tea and a Twix and do some deep breathing.

The terror, oddly, is entirely retrospective.

So here, in honour of, and with thanks to, all the amazing people I had around me for that torrid time, are the Little Big Things that made a difference:

The hour after I was diagnosed with Stage 3 breast cancer, still shaking, but with a clear, calm belief that I would be absolutely fine, the toast went up from my best friends over an emergency cup of tea: ‘F*ck caaancer!’ This became my mantra, my rallying cry, throughout my treatment. DH got it printed on a pink t-shirt that I wore to every chemo.  This ongoing black humour helped, enormously. A lovely school friend from days of yore sent me 12 cupcakes spelling it out for my very first chemo session – a very, very long day, with four intravenous potions including a new trial drug. As it drip, drip, dripped through, my mummy – who stayed by my side for the entire 11 hours – and the nurses watched me carefully, as if I might do something whizz bang, like Grandma after taking George’s Marvellous Medicine.

Attractive (and very cold...) hat, there, Pinchy.

Attractive (and very cold…) hat, there, Pinchy.

No matter how long those treatment days were – not to mention the interminable scans and check-ups – I had company for the full length of almost every one. New friends, old friends, my sister, my mummy, my mother-in-law and my husband came in shifts. My best friend bought me an M&S tuna salad every time so I could pass on the grim hospital lunch on the chemo day ward – always the last tasty thing I ate before my taste buds were nuked and my mouth went dead for a fortnight.

My sister – my rock – brought sweet lattes, and trashy magazines, and a beautiful Merci Maman necklace with the names of DH, DD and DS engraved on tiny hearts. My brother-in-law lugged Uggs back from a trip to the US so I would be warm and comfortable over that long, dark winter. My mummy bought me a sheepskin bear to cuddle, and made me flasks of ice chips to suck to save my mouth from blistering. Most importantly, she and my Pops, and DH’s parents, took turns to look after DD, who had just started school, and my DS, who was at nursery, and keep life as normal as possible for them.

It would have been an altogether difference experience without social media. The texts and Twitter and Facebook messages on every treatment milestone, from chemo through surgery, radiotherapy, months of herceptin drips and more surgery – became my oxygen. I was truly bombarded with love from all around, transcending time and distance and family fall-outs. It was overwhelming at first – I honestly had no idea how much I was loved – but people just saying they were thinking of me was a little thing that made a huge difference.

My friends saved up gossip and made me laugh, to take my mind off the pain of the canula, and the throbbing freeze of the cold cap, often arranging their own childcare just to be with me. One dear friend, who appointed himself my court jester throughout my treatment, texted me with a terrible joke every single time I was wired up to a drip. My biggest client bought me a real Hermes scarf to cover my bald patch! Another amazing friend handled all the woo-woo stuff I love: driving me to Essex to see a healer, and finding a kinesiologist and an acupuncturist to help with the side effects. Someone I hadn’t seen for years sent me some beautiful crystals. Another lovely friend sent me Figleaves vouchers after my surgery so I could buy some new, smaller bras. And my darling husband was always there: holding my thinning hair back when I was throwing up, gently stroking my sore skin, providing tissues for the constant nosebleeds, ferrying me around and generally trying to make life as easy as possible for me.

Chemo days almost felt like we were waiting for a flight to an exotic holiday, not battling anything – just buggering on through it, with humour and patience and as much dignity as one can muster when one is constantly required to get one’s tits out for examination. Trench camaraderie, maybe, but I’ve always thought of cancer as an interesting journey and my most important lesson, rather than a war against rogue cells.

And perhaps the biggest of all the little things was my loved ones’ willingness to indulge me in this. They never cried in front of me. They never showed their fear. They were never too sympathetic. No-one ever said ‘poor you’, thank goodness. They took my rejection of ‘cancer language’ such as ‘fighting’, ‘battling’ and ‘surviving’ on board.

Whatever they talked about between themselves or felt inside, I was always, consistently, buoyed up with laughs, and love, and extreme care. They let me be optimistic, and stubborn, and cheerful and sociable. They encouraged (or at least didn’t completely dismiss) my exploration of complementary therapies. They let me treat cancer as a terribly big adventure. They let me take the controls.

They let me f*ck cancer in my own way. And so I did.

Anger management

This is going to be a hard post for me to write, I suspect. But you know I’ve never shied away from looking myself in the eye and critically assessing my emotions and behaviour. And when there’s a Big Thing going on in the background, it’s kinda tricky to honestly and engagingly write about anything else. So I’m just gonna blog this one out. Be patient with me, gentle reader.

So. This is the thing. [Deep breath]. I lose my temper.

OK, I can hear a chorus of wry guffaws from other mums there. We all lose our rag, I know that. It ain’t pretty, but it happens. Sometimes our reaction is out of proportion to the crime committed. Often, we feel bad and guilty afterwards. But I’m not just talking about ‘normal’ exhausted mummy roaring when the smalls or their father have just tipped you over the edge. I’m talking about a truly disproportionate, terrifying fury that is extremely scary for everyone involved, including me. I’m talking about Losing It. ‘Seeing Red’, like Lucy, the little girl in Roald Dahl’s ‘The Magic Finger’, who finds sparks flying out of her fingers when she gets cross. Being out of control. Anger that bubbles up from deep inside, on a rush of adrenaline, and then explodes with little warning, leaving everyone traumatised, and weeks or months of relationship flotsam and jetsam to mop up. magic finger

Last May I wrote (Moodswings to the Max) about how hard I was finding it on the Tamoxifen I have to take for a total of five years to prevent my particularly aggressive, hormonally-linked form of breast cancer from coming back. I admitted that I was being a nightmare to live with, very up and down, and had on occasion gone off on one with people I love. I was still in that state, though, and not really ready or able to see things clearly.

What’s changed now is that after those horrendous first nine months or so on this powerful medication, I really did settle down, and the mood swings disappeared. And then something weird happened at the start of this year: I started to feel happy. Truly, peacefully, content. It started on a Thursday morning, on the way back from the school run. I was in the car, close to home, and suddenly had this overwhelming feeling that I can only describe as bliss. Like all the love in the world was available to me, and like I could only conceive of expressing myself in loving ways. I know this sounds extraordinary, but that’s how it was.

And it didn’t go away. I had nearly two months of feeling completely marvellous. Work was effortless, and fulfilling; my relationships with DH, my children, my family and friends were relaxed, and loving, and joyful. Nothing really wound me up; I didn’t sweat the small stuff. I stopped worrying about things I couldn’t change. My inner sea was calm, and I was cheerful. I also experienced what I can only describe as compassion for the first time. For someone who has spent much of her adult life in various states of anxiety, depression, resentment and martyrdom, it was a revelation. This was how good life could be, with not a single thing changing other than my outlook! And it was easy, and unconscious! I was happy. Seriously, how cool is that?

All of which loveliness made it even more shocking when a few Saturdays ago, out of the blue, I EXPLODED with anger at a family dinner. No-one saw it coming, least of all me. It was like I was watching myself. I went ballistic, about a small thing, that had always mildly irritated me in the past but which I had never mentioned. I stood up. I shouted. I gesticulated. Doors were slammed. The row escalated – fire was met with fire – and then very soon afterwards I started to feel a terrible sense of remorse, horror, and utter worthlessness. It felt like I had smashed something really precious. I felt utterly drained, wrung out, and like I didn’t want to exist. My thoughts were scrambled.

And then endless apologising, and the validity of the thing I had been trying to communicate negated entirely by the manner in which I delivered it. There were mutterings about me needing to see a doctor, and even mental illness. And then I felt very flat, and very low, for a few days. So sorry. So disappointed and frustrated that I had shattered my own state of calm and happiness. So conscious that the relationships involved would take a long time to get back to normal.

And then I realised that this was the third time since starting on the Tamox that I had done this. There have now been three separate occasions, all with close (safe?) family members, where I’ve been annoyed about some relatively minor bit of behaviour for a while, and then the next time it happens, BOOM. Pinchy, having never mentioned that she was irritated by this behaviour before, throws a grenade into the room. Friendly fire is always the most shocking. There have also been other occasions with acquaintances where I’ve suddenly gone from being Mrs Nice Guy (with a particularly rubbish cleaner, with a jobsworth postman, with a nosy neighbour) to being the Crazy Angry Lady.

And I can only see this now. It’s so obvious, in retrospect, but at the time, on every occasion I really did feel that the other person was to blame, that they had pushed me so far that I had snapped. This gives me hope, actually: I think my Rose Period at the start of the year meant that I was in a good enough place when this last episode happened that I could reflect on and evaluate it in a much more honest way.

Anyway, DH and I went to the doctor (which we both felt was a box-ticking exercise to appease worried family members, to be honest) who was sympathetic, and not at all surprised or concerned given my current chemical make-up. She also cautiously suggested that DH and I go for some joint post-cancer counselling. I have never had any feelings of anger about having had cancer, and feel I’ve dealt fully with my own experience, with outside support in the forms of my wonderful Health Creation Mentor, Kit, and my coach Amanda (not to mention my amazing family and friends). DH has also had his own course of counselling, but we’ve never spoken to anyone together about the hell of 2010-2011. We literally have no idea what the other has gone through. And his tendency to get angry himself when I go off the rails (thus not really helping the situation) may be rooted in his fear of losing me, which we’ve never explored together in a safe place.

I have also taken what feels to me like the most appropriate action: getting some tools under my belt to diffuse anger if and when I feel it brewing. I have just got back from my second cognitive hypnotherapy session with the quite brilliant Teresa Harvey who uses a mix of counselling, hypnotherapy, NLP and EFT (Emotional Freedom Technique – the ‘tapping’ that you sometimes see Paul McKenna using to help hardwire positive suggestions more effectively). We’ve looked at my memories and experience of anger, in the past and recently. We’ve done some visualisation stuff in a trance state. We’ve looked at how I might, in the future, be able to calm myself down and respond, rather than react, from a calm, assertive, loving place. It’s exhausting work, because I re-experience all the emotions I felt at the time, but it also feels very cleansing, and important, and positive.

So. I wish I could turn back time and not have put my loved ones – or myself – through these episodes. But sometimes things have to get really bad before they get better. Every experience teaches us something valuable. And if I come out of this more able to deal with conflict and my emotions, then that’s got to be a good thing for my children, my marriage, and my relationships with everyone from our parents to our siblings to my best friends to the bloody jobsworth postman. I’ve only got three and a half more years on the Tamoxifen. And hopefully, in the not-too-distant future, I’ll be able to say that I used to lose my temper. And get back to being calm and cheerful again.

Most of the time, anyway: I need to continue to teach my children that experiencing a full range of emotions, positive and negative, is normal and desirable, and it’s how you handle those feelings that counts. Also, I’m not the new Pope, or Buddha, and there’s always going to be some tosser who cuts you up on the roundabout.