Turn and face the strange

This week, we lost Ziggy Stardust and Severus Snape, both aged 69, to the ravages of cancer. It’s no age, really, is it?

I have been quite surprised at my own distress at both deaths. I was just a twinkle in my daddy’s eye when *that* Starman moment aired on Top of the Pops in 1972, after all. I can’t claim that David Bowie changed my life, as he did for so many others. I just thought he was an awesomely cool creative force (even if my favourite Bowie song is the super-cheesy Absolute Beginners). But I still cried.

As for Alan Rickman, he was in some of my very favourite movies. My first year at uni was more or less back-to-back viewings of Truly Madly Deeply. Plus he was Professor Snape, for goodness’ sake.

And you just feel that bit chillier when a star has gone out, even if it wasn’t shining directly on you.

There’s another obvious thing, of course. An awful lot of people die from some form of cancer every day. Those rogue cells are complete and utter bastards. And every time there is a high profile death from cancer, I do some kind of quasi-non-Catholic-sign-of-the-cross thing in my head.

There, but for the grace of the universe, go I.

It resonates, deeply.

During this very sad week for creativity and movies and music, though, I have been doing this mental manoeuvre without the added acrobatics of crossed fingers, because on November 5th 2015, I got my official five year sign off.

This was very much a WHOOP WHOOP! moment.

My oncology team are no longer interested in me. I don’t have breast cancer anymore.

There’s no such thing as being “cured”, of course, and disclaimers abound: there are no guarantees that there won’t be a repeat performance at some point in the future.

But my prospects are excellent: I’ve had amazing, pioneering surgery, a super-powerful chemo drugs trial, belt-and-braces radiotherapy, and I’ve got another five years of daily Tamoxifen tablets as an insurance policy. I also get annual mammograms until I’m 50, and an annual chat and check-up with the breast clinic. It’s all good.

I felt, yet again, like the luckiest girl in the whole world when the consultant stood and smiled and shook both our hands and said: “Well done. You did it”. Me and DH cried outside the hospital, with relief and happiness. It really did feel like we could exhale after holding our breath for five years.

Serendipitously, it was Fireworks Night, so obviously we had a handful of family members and close friends and excitable small people over for low-key sausages and fireworks and champagne. It was awesome to be able to say, out loud, that, as promised, I have well and truly fucked cancer. Pretty emotional, all round.

Life was good. We could all chill out and move on.

Well, for six days, anyway.

Because on the seventh day after my victorious sign off, DH got made redundant.

“FFS!!!” doesn’t really cover it.

I felt like we were bloody Katniss and Peeta in The Hunger Games. We’d just wiped out one deadly opponent when another poisoned arrow came hurtling out of the woods towards us.

katniss

Me and the boy, recently.

My mum said, sagely, that you expect things to calm down by your 40s, but actually it often ends up being the most life-changing decade. It’s true that almost everyone I know is going through, or has gone through, some sort of Major Thing in the past couple of years: separation, divorce, serious illness, parental illness, bereavement, redundancy, financial stress.

Your 40s, in other words, are when you have to finally, properly, grow up. We are the adults now. The shit is happening to us and no-one else is going to make it all better or write a sick note excusing us from responsibility. That’s pretty scary.

DH had had a crap year at work, to be fair. After nine years doing extremely well in the same company, there’s nothing quite like being wrong-footed by your new boss at every turn, so your confidence is utterly destroyed. If he were a different man, he might have seen the eventual departmental reorganisation and redundancy as a blessing.

It was nothing personal, but my boy took it deeply personally. He has always worked hard, and cares very much about doing the best job he can. He’s all about achievement, and problem-solving, and efficient processes and spreadsheets and excellent relationships with clients and colleagues.

He’s also got the risk profile of a 70-year-old, according to our IFA: security, stability, salary, savings are his watchwords. My frivolous spending habits (“Ooh! Look! I must get that resin cockatoo for the mantelpiece!) and freelance life drive him potty.

Redundancy was literally his worst nightmare. In the days after he was given the shocking news, I could see he was imagining, somehow, that being made redundant would inevitably lead to losing the house, me, and the kids, until he was destitute and homeless.

How to support someone you love, who has got into that state? I was still out of breath from completing my own long, dark marathon of the soul. I had to put something of a shield up, to protect myself and not get dragged into the slough of despond. No use two of us crumbling under the pressure. I could definitely have given him more cuddles and sympathy, but at the time my gut instinct was that there was nothing to be gained by indulging the catastrophising.

Instead, I automatically went into Coach Mode, and encouraged him to Take Massive Action. It’s the only way of regaining some sort of control when all seems lost, really, isn’t it?

Reach out. Zsush up that CV and LinkedIn profile. Email and call everyone who might have a job, or might know someone who did. Take people for coffee. Arrange meetings. Go to every interview. Keep an open mind.

Above all, do whatever you need to do to keep your head in the right place, darling. Accept all offers of professional, moral, medical and therapeutic support.

Chin up. Smile. Shiny shoes. GO GO GO!

As with all of life’s big landmarks and crises, one finds out who one’s friends are. The lawyer and the headhunter truly stepped up, using their skills and love to support and advise, on a daily basis, sometimes for hours on end. Many others chivvied and cheered and were generally in touch and checking in. And DH was truly humbled by the number of colleagues and contacts who were as shocked as he was, and said lovely things about him.

Of course, when you take massive action, good things cannot help but happen eventually. And so it was that just five weeks later, on the very last day of term, just as he was breaking up for Christmas before being redundant on 31 December, DH was sent a contract for a very exciting new job Up That London.

He was never out of work for one second, after all. And I could not be prouder of him.

Two weeks in, and he’s loving it. Great, interesting people who have made him feel very welcome and can’t do enough to help. A boss who already knew and liked and respected him. A huge and stimulating challenge. Lovely jubbly.

So we started the New Year with me being officially healthy for the first time since 2010, with a job I love, and DH enjoying a proper silver lining in his career. Our quite extraordinary small people (DD is nearly nine-and-a-half and DS is nearly seven-and-a-half) have settled beautifully into their new school, where we moved them at half term, after all that nonsense with the last place.

There’s no way of knowing what 2016 will bring for us. But as Baz Luhrmann once wisely said: “Don’t worry about the future. Or worry, but know that worrying is as effective as trying to solve an algebra equation by chewing bubble gum. The real troubles in your life are apt to be things that never crossed your worried mind. The kind that blindsides you at 4 pm on some idle Tuesday.” True dat.

And, appropriately, in the words of the visionary Starman: “I don’t know where I’m going from here, but I promise it won’t be boring”.

PS – I wasn’t kidding about the cockatoo…

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The one where Pinchy gets a proper job (sort of)

So I haven’t blogged for a while. I’m sure you’ve all been feeling terribly deprived of my wit, pathos and insight since November, but hey. I have been busy, people! Busy doing what, Pinchos? you may enquire. Busy getting an actual grown-up proper job, THAT’S WHAT!

My new walk to work :-)

My new walk to work 🙂

Yup. This die-hard solitary writer now has a regular income for the first time since leaving my last salaried employment, 14 years ago. And actual colleagues! Since the start of January I have been working for one of the very biggest PR consultancies in the world, supporting the EMEA marketing team with copywriting, editing, editorial consultancy, social media content, training, and other word-related stuff.

Cool, huh?!

It’s been a very slow burner, but there was something inevitable about it. I’ve been working with this team since my earliest days freelancing: as soon as I resigned as features editor of trade mag PRWeek on a whim in 2001, my now-boss commissioned me to help her with some case studies, and to turn a couple of PR campaigns into entries for industry awards schemes. We discovered we worked well together. We became friends. Over the intervening years, our combined skills built an incredibly efficient, successful awards strategy, which has helped the consultancy become the most award-winning across Europe. I worked for her throughout both of my ‘maternity leave’ periods (which don’t really exist when you’re self-employed), and was even editing stuff to meet a looming deadline while strapped up to my drip on the chemo ward.

I also started doing award entry writing, editing and training for other agencies, of all sizes, around the world. I created a niche: there aren’t many former journalists who really get public relations and can do this sort of stuff well. My clients were often shortlisted and frequently won. But there was one problem. It was a rollercoaster. In the run up to awards entry deadlines, I was rushed off my feet, working for clients in several time zones, all charging PELL-MELL towards the same cut-off date. At peak times, midnight shifts (and beyond) were common. I was working while the children were at nursery, and then school, switching to mummy mode for a few hours, then back to my desk when they were in bed. I was frequently juggling dozens of pieces of work, including many first drafts written by people whose first language is not English, all of which had to tell an equally engaging story to convince the judges, all at the same time.

But then, the week after deadline: silence. I never quite worked out the trick of doing marketing and filling the pipeline with other non-time-sensitive stuff while you are rushed off your feet, so my working life was essentially manic peaks and then depressed troughs. I could have been writing my taking-bloody-forever novel during the down time, or spending hours in the gym, or decorating, but mostly I used to sit at my desk fretting. (And pissing about on Twitter, obviously.) Not having a deadline doesn’t really work for me: I descend into the slough of despond pretty bloody quickly if I haven’t got a pressing to-do list.

On paper, I had an amazing work-life balance. I worked school hours, was able to drop off the children and pick them up every day, and was there for every single school thing, while still earning a good living doing something I really like and am good at. In reality, I was stressed out and constantly worried about money – cash flow was ridiculous, as some months I’d be billing thousands and then other months, practically zero. And when you haven’t quite had the five-year sign off from your oncologist, this level of stress is probably a bad idea.

Something had to give.

Last summer, as I hit my 41st birthday (so much less dramatic than 40…) I took some time to reflect on what I had achieved with my career, and what I wanted my next decade to hold. As I pushed towards the 10th anniversary of starting my limited company, Besparkle, in August 2015, I knew I had two choices. The first was to change things dramatically to make it into a real business rather than a winging-it one-woman band. This would involve sorting out childcare, working pretty much full time, finding other contractors and partners, and investing in marketing. Maybe even writing an actual business plan for the first time! (Told you I was winging it…) The second option was to chuck it all in and find a job.

I dropped my biggest client a casual email, on a whim (this appears to be a pattern): if anything came up at her agency, job-wise, that she thought I might be a good fit for, would she let me know? She read between the lines (and presumably decided she didn’t want to lose me to a competitor) and within a couple of weeks had created a new job description, just for me.

At that point, obviously, I got cold feet. I felt utterly torn. One the one hand: oh my goodness, the bliss of never having to worry about whether I was earning enough again! And it wasn’t even that big a leap: I would still be doing a job I know and enjoy, with someone I work really well with. On the other hand: do I want to give up my independence, my flexibility, the children being my priority? Did I want to hand them over to a nanny? Do I want my days to be owned by someone else? Could I still go to all the school things? Aren’t I happy just working alone? Do I really want to do any commuting at all? Do I need colleagues? Do I want to say goodbye to my business? It’s only little, but it’s still mine, and I built it, and I’d just had my most successful year since having children.

Many of these points of resistance were incomprehensible to DH, who was just over the moon I was even considering it. He’d never really forgiven me for resigning without any discussion with him, and doesn’t exactly embrace financial insecurity. But he had another, more positive, reason for encouraging me, too: he reckoned that having colleagues and getting out of the home office would do me good personally, in terms of my happiness and emotional stability. Other high-flying (mostly male) friends also told me to basically ‘get over myself and get a job’.

Then HR got involved, and it became apparent that what they could offer me in terms of a full-time salary was below what I’d need to earn to factor in childcare and travel. The numbers weren’t adding up on either side. But we all persisted, going backwards and forward on possible scenarios: the will was there to make this work, somehow. Then I had a lightbulb moment: Option 3 – let’s stop talking about employment, just put me on a retainer contract for a few days a week instead. This was a win-win: they wouldn’t have all the overheads of a new employee but still had priority over my time, and I would get to stay in control and keep my independence. Essentially, this is the holy grail for a freelancer.

And so that’s what happened.

The logistics have sort of fallen into place. After a couple of false starts, we finally found a fabulous, cheerful, capable after-school nanny who does pick up, tea, homework and bathtime, enabling me to work two long days and spread my other hours out over the rest of the week. The smalls are in breakfast club a couple of days, too. And despite my worry about not being there for them, they are, of course, absolutely fine. They are eight-and-a-half and six-and-a-half this month, after all, rather than babies. I still mostly work at home, I can still do school stuff (though the school campaigning has had to go on the back burner) and still do some work for selected other clients, and still manage my own time.

The best bit, though, is Wednesdays. My London day. My grown-up, proper job day. The day I get up early and put on a smart dress and get on a packed train and go to a big open-plan office and see my inspiring, clever, creative colleagues, new and old. I have a half-hour fast walk from Waterloo in my trainers, through a historic bit of London that is very easy to love (I only forgot shoes and had to buy a new pair of fierce heels once, honest), and get sushi for lunch, and have meetings in cool little break-out areas with some of the cream of the communications industry.

It’s the one day of the week where I’m a professional first, and mummy second. I leave before the kiddies are up, and DH does the morning routine and school run. I get back around 7.30pm to find tired, happy, freshly-bathed kiddies in their PJs watching the Simpsons with a glass of milk, with the nanny having handed over to daddy. That this is possible, and everyone is OK, is a revelation for me.

I know this is already a very long post but I have to make one final point: I could not have done this without DH. He has totally stepped up. He has a greater childcare role than ever before and has taken on more of the domestic burden without blinking. I feel like he takes my work really seriously for the first time in a long time, and he is doing his bit (thankfully with a pretty flexible employer himself) to make sure this new level of formality in my career works for all of us. We’ve always been a team, but now it feels more like we are equals again. It’s turning out to be good for us. And I have to admit that he and our friends, who are all a bit ‘I told you so’, were right all along, damn them: creative solitude is all very well, but sometimes you’ve just gotta put your lipstick on and get out there. Who knew it could be such fun?

Check your boobs, people!

So Breast Cancer Awareness Month rolls around again: yet another disease awareness campaign during which the women’s mags, weekend supplements, Twitter and Facebook feeds will be full of pink ribbons, real-life stories, tips for examining yourself and reminders of the importance of a Healthy Lifestyle. If you, or people you love, haven’t had a brush with cancer, it’s pretty easy to skip over those pages. I know I used to: those features and posts just didn’t seem relevant because young women don’t get breast cancer, right? And anyway, it’s too scary. And maybe even a bit too much information. And then, ironically, I was diagnosed with advanced breast cancer actually during Breast Cancer Awareness Month, four years ago. I’ve always had immaculate timing. breast_cancer_care_checklist_0

Funnily enough (not funny, obviously, but I’ve always needed to laugh blackly about this stuff – the alternative is dissolving into a soggy pile of woe, which is not really my style), the week I was diagnosed I had, in fact, just read one of those ‘real life experiences’ about a young woman with breast cancer in Grazia, about which I wrote a couple of years ago. I was 37 years old, with a four-year-old daughter who had just started school, and a two-year-old son. That month, everything changed.

Four years on from that surreal whirlwind – from discovery of lump to oncology department in a matter of days – Breast Cancer Awareness Month resonates rather more. But it’s complicated. I sort of glance at the features and the information sideways. I still can’t look at them head on. Even having gone through it – or perhaps because – it’s possible to have ‘cancer fatigue’. And it’s just too close to home – I have my Year 4 mammogram at the end of this month, won’t be officially in remission for another year, and my consultant is now making noises about me being a candidate for the new 10-year protocol of taking the crazy-making Tamoxifen instead of the standard five years. And even when I’ve got through all of that without so much as another twinge, cancer haunts.

People I know who are well past the five years, even ten, 15 years after diagnosis, still say they are not ‘over’ it. That it never really leaves you, having had cancer. That every year around the anniversary of diagnosis, even if it was decades ago, they still have a frisson of fear. The memory of that utterly life-changing, bowel-liquidising moment when they say ‘chemotherapy’ to you for the first time is too powerful to ever fade completely.

And then, inevitably, giving rising rates of all cancers, someone else you know is diagnosed and starts going through the exact same treatment pathway as you, and it brings it all back again. This happened recently to me – an old colleague posted her shocking news on Facebook and it knocked me sideways with nausea. She is handling the treatment with humour, eloquence, stoicism and immense calm, which I much admire. She says my blog posts when I went through it were inspiring, which is very kind, but I think it’s more that the human spirit is quite remarkable. Many, many people who have complete breakdowns at stuff like lost luggage or being hit up the arse by a man in a white van will end up dealing much better with a genuine, life-threatening crisis.

Nevertheless, reading her upbeat updates on her treatment was, I think, the reason why I found myself sobbing in the car park at Surrey Sports Park a couple of weeks ago. I was due to meet my best friend for a swim after dropping the children at school, and just as I parked the car, a propos of bugger all, I had a flashback. During which I was lying topless on the bed in the assessment room at the Royal Surrey County Hospital’s breast unit, with one arm in the air and the consultant taking a biopsy of the lymph lump under my armpit. On the computer, there was the mammogram of my right breast, the terrifying, obviously-not-good-news white mass of tumours shining out of the screen. It was a split-second memory, but it was very, very vivid, and I just burst into tears and sat in the car crying by myself, thinking ‘I am not in any way over this. I have not really dealt with the utter nightmare of what happened, and I am really scared of it happening again’.

It’s over (probably forever), but it’s not ever going be be over, at the exact same time. You forget, and then you remember, and it’s like being winded all over again.

I love autumn. It’s my absolute favourite season. I love the colours and the leaves and the conkers and the low sun, and the return of my preferred uniform of opaque tights, short skirts and long boots. I love the ‘return to school’ feeling, the hard-wired desire to buy new stationery, the urge to make the home organised and cosy in preparation for winter nesting. I love the start of ‘roastie season’, where every Sunday involves friends, family, red wine, open fires, a sizzling joint (the meaty kind, obvs) and all the trimmings. But on top of that, autumn has become my most fearful season, and October is now the weirdest month. There are so many layers of reminders: every year it’s Breast Cancer Awareness Month, every year I am getting jittery as my annual mammogram approaches, every year I remember all over again those dates: the 6th, when I went to the doctor to report The Lumps; and the 13th, when I had the first mammogram and was immediately diagnosed. (October 6th is also the day we moved into our silver lining house three years ago, even more weirdly).

There is, though, the lightness and exhalation when the good news comes back from the radiography department: all-clear, I can relax and start planning Christmas. And the bigger picture stuff: I am so, so blessed. I had the most amazing treatment, from my incredible surgeon to my risk-taking oncologist and the lovely radiotherapy team. I am still well looked after, and in very good hands, and if I have any worries at all, I know I will be seen within days. I can tick off another year and am almost there, almost signed off! And then we can open the vintage Dom Perignon I have squirrelled away!

And, of course, I am still here, and well, and life is to be lived and enjoyed. I’m still around to see my babies grow up into wonderful, kind, funny, clever, dazzling young people and to hug them endlessly. Still here to laugh and cry and eat and drink and dance with my husband and my friends and my family, all of whom are so special and lovely and generally awesome, I must be the luckiest girl alive.

None of which would have been possible if I hadn’t known, via my flicking through all the features in women’s magazines over the years, what to look for, how to examine myself, and the importance of reporting anything that ‘just doesn’t seem right’ as soon as possible. Most breast lumps and bumps and pain are benign, and your mind will have been put at rest. If that’s not the case, and Stuff Needs Sorting Out, you’ll be whisked through our amazing healthcare system and have the best chance of effective treatment. So do give Breast Cancer Awareness Month a tiny bit of attention this October. It might just save your life.

 

In which Pinchy swims for bloody hours

I don’t know why it’s taken me so long to blog about this. I’ll probably work it out while I’m writing. Last month, I did my Biggest Ever physical challenge: I swam 5K for Sport Relief. Yes, I know! Me! The doyenne of exercise-avoidance!

Five kilometres, I can tell you, is a bloody long way. It is, in fact, 200 (count ’em) lengths of the Surrey Sports Park pool. It seems even longer when you can only do a ‘majestic’ (ahem) breast stroke and have never done more than happily bob around a holiday swimming pool for 40 years prior to taking on this challenge.

I’m being slightly disingenuous, of course: I didn’t just get in the pool on the day and hope for the best. I had been training for it since September, along with my two co-swimmers, my dear friend S and her oldest buddy A. Well, when I say training, it was more like swimming up and down for a bit twice a week, and then going for a natter, a cuppa and a panini because we were ‘famished’. At first, anyway. We were all comfortably swimming a mile – 64 lengths – by November, although that was taking me an hour. And then I sort of… stalled. I didn’t really get in the pool much during December and January. Or February. I started to seriously think about pulling out of the swim. I hadn’t started fundraising and was overwhelmed by the sheer size of the task for a non-swimmer.

Come to think of it, I was overwhelmed by much over the winter. It’s true that you only realise when you emerge from a tunnel how dark and cold it was in there, and how long it has been since you felt the warm sun on your face. Sitting here now, feeling broadly OK, I can’t quite believe what a struggle those wet, overcast months were, in all ways. It was probably a combination of seasonal glumness, a stressful time re finances, my natural tendency towards depression, and big bad life-changing stuff going on for friends who I love fiercely. Plus I was working almost every evening to meet deadlines and very involved with our school campaign after our head teacher left suddenly. (See my previous five posts for the full story!)

This period of General Rubbishness, pre-swim, was topped off nicely by a week in Egypt. Our first family holiday abroad for three years, and the first since I finished my cancer treatment. We took the kids out of school for a week and could still only afford it by hiving off a bit of the money we’d borrowed for a basic refurb of our decrepit kitchen, combined with DH’s first bonus for a few years. In other words, we were quite desperate for a holiday. The kiddies were looking forward to it so hard I thought they would burst before we hit Sharm. We were going to have an amazing time!

There is a small but important life lesson here about ‘non-attachment to outcomes’: the more you want things to be a certain way, the less likely they are to meet your expectations.  I’m always quoting Alain de Botton on travel – something very true he once said along the lines of ‘the trouble with holidays is that you take yourself with you’. The trouble with Egypt was that I took my tearful, short-fused, exhausted self there and expected to be transformed instantly by the sunshine, sea views and all-inclusive package  into the easy-going, cheerful version of myself. What actually happened was that I sat on the lounger with cause-less tears running behind my shades while our delightful and beautiful children had an amazing week in the pool. My Kindle died, both our phones were stolen from our hotel room, necessitating far too much interaction for DH with hotel security and management, reps, and Egyptian police stations, plus there was the worst torrential rainstorm Sharm had seen for decades. My energy was in such a shit place, frankly, it wouldn’t surprise me in the slightest if I manifested all of the above, like a frickin’ witch.

I was planning to swim loads while we were there. I didn’t. I did snorkel on a coral reef with beautiful fish, like Actual Finding Nemo, though, and that lifted my spirits a little. When we returned, it was only a fortnight to the Big Swim and I had only covered less than a third of the distance in my training sessions. So I went Forrest Gump. I got in the pool and just swam, for 80 lengths. Then a couple of days later I swam 100. Then 120. And finally, on the Monday before Sport Relief Swimathon Saturday, I ringfenced three hours and swam 180 lengths. At that point, and not at any point before, I knew I could do it. S mentioned that last year’s Swimathon times were on the website. I made the mistake of looking and realised that I really was going to be one of the slowest in the entire country – no-one in my age group had done 5k nearly as slowly as my predicted time of 3hrs 20 minutes. The only women who had done that sort of time were (I kid you not) called things like Doris and Ethel, which I pejoratively assumed meant that I was as slow as a Very Old Lady.

That week, as I wondered again why I was doing this, the Sport Relief programme about Davina McCall’s far more crazy challenge to cycle, run and swim 500 miles from Edinburgh to London, was on telly. The documentary followed Davina on her trip to Africa before taking on the challenge. As she sat with the little girl whose days consisted not of school and games and fun with friends but the monotony of breaking rocks and breathing dust with her mother, hour after hour after hour, for pennies, I cried. I realised that the money I had already raised at that point would send two little girls like her to school for a year. THAT was the point. And I cried again the next morning when I tried to explain to DD when she asked why I was swimming so far. There was my motivation. To give little girls, just like my bright and funny and precious seven year old daughter, a chance at a better life.

Nevertheless, I still had to do the damn thing. I didn’t sleep the night before the swim. I woke up in a terrible mood, really jittery and anxious. S had an upset tummy and A had her back strapped up. It was not looking good. The worst thing was waiting all day: the event wasn’t due to start until 6pm after the  start time moved from 5pm. I went slightly ballistic, and pointed out to the organiser that this would mean I would be in the pool until nearly 9.30pm, meaning my children couldn’t be there at the finish line and our plans for a takeaway and champagne with my M&D, who were up for the weekend to cheer me on, would be buggered. After she realised quite how slow I was (and that she’d probably need to give me the keys to lock up…) she asked if I’d like to start an hour early, in my own special lane. Like a special person. FFS. My sister texted, accurately: ‘We are not a family of athletes, Pinch’. I graciously accepted, of course.

So we arrived at the pool. DD and DS had secretly made me a poster saying ‘Go Mummy Go!’ I got into my cossie. Put my goggles on. Still shaking. My lovely friend B arrived en route to her date night just to see me off. Good luck countdown texts arrived from other dear friends. Team Pinchy was cheering on the sidelines. I got into the water, put my bottles of sporty drink stuff raided from DH’s cycling larder on the edge, and started. I was not entirely in a lane of my own – there was also a small child, who swam the entire 200 lengths in less than two hours, and a series of elderly gentlemen doing the 5k as a relay, who also finished well ahead of me. It took me a good 40 lengths to get into any sort of stride. If one can be shaking while ploughing up and down a pool, that was I. I stopped briefly every 20 lengths for a quick gulp of drink, and to check in with the very patient lady counting for me. Every length took one minute, for the first couple of hours. Then, as everyone else in my lane finished and I had it to myself, I actually got quicker. I was coming in under target! photo 2

My family and S’s arrived to cheer us all on for the finish. The last 20 lengths were punishing: I was breaking new ground, and by that time my right arm was very painful. It’s the one that I had all the lymph nodes removed from; my movement is slightly limited on that side and it does get very uncomfortable at the top and in the armpit if I overdo it, risking lymphodoema and cellulitis ( I’ve only had this once, and it was royally crap).

Then, suddenly, it was the two hundredth length. My darling husband and babies stood at the end of the pool shouting ‘COME ON PINCHY!’, and I was trying to swim 25 metres while doing an odd mixture of sobbing and laughing. And then it was over. My official time was 3hrs 8mins. I’ve just checked and I was the 3,680th person to finish in the country. Whoop! Because I had started an hour early, I was actually out of the pool a few minutes before my much speedier swimming buddies, and was able to cheer them on at the finish. We had done it! Between the three of us we’ve raised a couple of grand so far, I think – you can still donate on my page at https://my.sportrelief.com/sponsor/majapawinskasims – I’m a few quid shy of £700 so all donations very welcome!

There was elation and achiness and lots of hugs. And we all got a medal, much to the smalls’ delight. Then champagne and a massive fat well-deserved Thai takeaway at home, followed by a bath in oil provided in my lovely school mum friend E’s ‘survival pack’ (along with bananas and jelly babies).

I woke up the next morning, terribly glad it was all over (although slightly surprised I had not turned into a size 6 sylph overnight). And at that moment, I began to feel better. Lighter and brighter. I had a health kinesiology session with my very dear friend Magic Emily, which helped shift things further and sorted out the achy lymph-free arm. And I have felt a little bit more myself every day since. I haven’t completely shaken off the Gloom, but I’m getting there. And that’s prolly why it took me so long to blog.

I’m never, ever swimming 5K again. But I quite fancy a different sort of physical fundraising challenge. I’m thinking trekking Peru for Breast Cancer Care next. Machu Picchu, anyone?

 

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.

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…