Pink Month - October 2002

Book 3 of The Last Clansman (provisionally titled Yiska) has been delayed because, for the past year I have been in treatment for Breast Cancer. I have had Chemotherapy, Surgery and Radiotherapy - my cancer was caught fairly early but my surgeon and oncologist were agreed that we should 'hit it with everything' as a young, strong lass like me could take it! Thankfully they were right, and, as I write this, I am officially certified 'Cancer Free' - all gone, nada, zilch… or the more taciturn cautious version - NED - No Evidence of Disease.

As I struggle to pick up my life again (writing and otherwise) I realise that we women effected by Breast Cancer are forever changed by it. Not all the changes are bad - granted, the fear of recurrence rather hangs over one like the sword of Damocles - but one does slowly learn to live with the idea and count one's blessings in a more prosaic, everyday sense.

Then, Breast Cancer Awareness Month comes along - or, as we ladies on the BC discussion board call it 'Pink Month.' Now I think raising awareness is very laudable and if it saves just one life by encouraging self-examination that has to be a 'good thing.' However, being as BC gets a whole month rather than just a day, it would be good, I think, if some of that time was devoted to raising awareness of whole areas and issues connected with BC which are never commonly talked about; indeed, one only really becomes aware of these issues when one is 'in the zone,' i.e. already suffering from the disease...

For example; suppose a young woman in her 20s or early 30s does find a lump - chances are with some GPs she will be told she simply has lumpy breasts and it's probably hormonal (and no, I am not kidding) and she is rather too young to have BC. This is said with the best of intentions to somehow make younger women feel safer. 'BC is an older woman's disease' - NOT TRUE. Statistically, a pre-menopausal woman has a lower risk, but Breast Cancer can strike at any age.

Here's another puzzler; a young woman (late 30s) goes to her GP and says, 'May I be screened please as my mother is recovering from Breast Cancer...'

What's that? Open and shut case you say? Of course she will be screened!

Well, no. That woman will probably be told that if her mother developed BC after menopause, it is extremely unlikely to be the kind which has any genetic link. Go home and don't worry.

A year after this reassurance the 'too young, genetically safe' woman is diagnosed with a 2.8cm, grade 2 tumour. The NHS will not routinely screen a woman unless three of her immediate relatives: mother, grandmother, sister, aunt, have had BC. If/when your risk is calculated to be high enough you will be screened - but then, who knows where one of these 'genetic pathways' is starts? Tough luck for you if you are the beginning of the chain!

I am certainly not bashing the NHS here - I would never do that after the care and compassion meted out to me over the past year. The nurses, oncologists, surgeons and radiographers do an incredibly difficult job, for the most part with warmth and humour. The Chemotherapy nurses in particular… amazing women who care deeply about what they do. I DO understand the reasons (money, time, resources mostly) for drawing a line in the sand over which only women with a perceived high risk may step to be screened. Perhaps I'm just suggesting the line be moved a bit or be... a bit more fuzzy!

Another myth perpetuated by 'Pink Month' is the old chestnut of survival rates. Again, I understand why, I know people need real hope to cling to - a lifeline when first diagnosed. And if I knew then what I know now, maybe even I (eternal optimist) would have locked myself in a cupboard for a year instead of fighting. But come on! Wake up! Women are DYING of BC still - 13,800 in the UK last year. It may shock and surprise you to know that some of these poor, dead women are counted as 'Survivors' - that the statistics for survival rates so happily quoted in fact, often include those who have passed on. The 'trick' is to last 5 years after initial diagnosis, so for example, if you survive the initial skirmish but then, 5 years later develop a secondary tumour at a distant site, you're still a 'Survivor' statistically (of course, also in the hard won, metaphoric sense). Women whose cancer spreads are counted as dying from Metastaic Disease and these are the unacknowledged heroines of BC - these women often go through clinical trials, as the medical establishment refines and monitors new drugs and therapies for those who will come after. To my mind, Breast Cancer Awareness Month does these women a great dis-service by not talking more openly about Metastaic Disease - there is great, renewed cause for hope on this front too with the new generation of aromatase inhibitor drugs such as Arimidex.

Perhaps the danger lies in seeking to reassure too much, so much in fact that a kind of lassitude sets in, that people's perceptions of BC become such that common responses on being told a friend has BC are things like: 'Oh, but they caught it early didn't they?' or the perennial favourite - 'but you're fine now, right?'. The deep-seated old fear of the 'C' word has become transmuted into something else, something intangible. Cancer can be managed now right? No. We are getting there though... but not yet. In the meantime, don't let anyone tell you having cancer is in any sense easy because that's a base betrayal of all Cancer patients.

So, what would we BC ladies LIKE to see 'Pink Month' achieve? Well, REALISTIC AWARENESS would sum it up.

No more ignoring those fighting with Metastaic Disease - no more sweeping them under the carpet - they deserve so much better.

No more super-models and pop-stars bleating on about how they 'found a lump once and - oh it was so worrying for a day - so they know what Breast Cancer 'victims' are going through - NO YOU DON'T SO F*** OFF!!!

No more reassuring us we are still 'real women' only to put the aforementioned supermodels/pop-stars on the cover of 'PINK RIBBON' magazine. Let people see that baldness does not always equate dying - just a rather nasty, but necessary, drug regime. Maybe then people would stop talking to us as if we're already gone... 'cos in the immortal words of Terry Pratchett's Granny Weatherwax; 'I aren't dead.'

Oh, and Asda. God bless you and all that. But please, no more pink pasta!!!

Cancer is so limited

It cannot cripple love
It cannot shatter hope
It cannot corrode faith
It cannot destroy peace
It cannot kill friendship
It cannot suppress memories
It cannot silence courage
It cannot invade the soul
It cannot steal eternal life
It cannot conquer the spirit

(Anon)

Wishing you all the very best of health and happiness.

Miller Lau
October 2002

PS: Malky's rattling around my brain so I guess I'm back 'in the zone' - normal service will be resumed just as soon as... you know!

© Miller Lau October 2002

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