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.

 

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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

 

 

 

 

 

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.