What colour is breast cancer?

October is breast cancer awareness month and many in the sisterhood are commenting on the need to choose wisely when making a pink purchase. It’s good advice. Some pink transactions are better than others when it comes to the donation a breast cancer organisation will receive.  Improved breast cancer awareness even if it is through all things pink is a good thing and especially among communities and cultures where women’s health issues remain something of a taboo.   There is room for improvement on the awareness front closer to home too, not just in sub-Saharan Africa or Dulankhaan.

Breast cancer is not one disease, no two breast cancers are alike and whilst we’re wrapped up in pink ribbons more than 1.3 million will receive a breast cancer diagnosis and c.500,000 will die each year. Early breast cancer i.e. that which has not spread beyond the breast is easier to treat and I use the word treat deliberately. Even after treatment, breast cancer can recur up to 20 years down the line thus I will only use the word cure when 20 years have passed uneventfully.   Metastatic breast cancer, i.e. that which travels the blood or lymph superhighway is incurable.  Many women and a small number of men are living with secondary, metastatic breast cancer.  In general their condition is poorly understood as this excellent article explains:  http://blogs.independent.co.uk/2012/10/31/secondary-breast-cancer-but-youre-going-to-be-okay-arent-you/

So what colour is breast cancer?

The ribbons are pink but breast cancer doesn’t resemble candy floss, marshmallow or iced buns in any way, shape or form.  Colour psychology suggests that pink affirms physical tranquillity, femininity, sexuality and survival of the species.  There is nothing physically tranquil, feminine or remotely sexy about dealing with breast cancer.  It’s all about survival.

Red might be more appropriate. It symbolises physical courage, basic survival, defiance and war.  These are essential traits in hand-to-hand combat with breast cancer (or any other kind of cancer) when faced with the insubstantiality of our own mortality.  Red also signifies fury. Many who are challenged by cancer find themselves confronted by an uncharacteristic and unfettered primordial rage as they stare into the abyss.

Yellow is another option; the colour of emotion. Yellow embodies optimism, emotional strength and confidence. It’s impossible to travel the breast cancer boulevards without these qualities.  Yellow also denotes fear, depression and anxiety; rogue hitchhikers who want to strangle us if we give them half a chance.

Black is a possibility too.  All colours completely absorbed. Black portrays something evil, depressing or deathly, a black hole at the centre of the universe relentlessly drawing all light and beauty into its darkness. Black also symbolises class, elegance and exclusivity and women with breast cancer join a special sisterhood, men with this disease are welcomed too.  Raise an eyebrow to our black humour but know that it offers a champagne supernova for the soul.

A champagne supernova for the soul, courtesy of techknowbits.com

 

As anyone with kids will know, mixing all these colours will most likely produce a muddy shade of brown and perhaps that’s the answer to my question. Maybe breast cancer is muddy, murky brown.  Brown denotes seriousness and support; it’s also said to be sad and wistful.  Abundant in nature, brown is infrequently expressed as a favourite colour.  Is breast cancer brown?

I’ve given this some thought. Whilst it seems breast cancer brings something from each of these colours (mingling into that muddy brown again) I like to keep my prism handy. The journey is fraught with difficulties, there is no certainty about its ultimate direction and the duration is indeterminate too.  But I choose to walk each day under a brilliant rainbow sky and whether it’s few days or many, I am grateful, truly grateful, for every one of them.

The Fair Witch Project

It’s cold outside today and as I’ve recently finished my final OU course I’m amusing myself with some research. I began by exploring the retail markets in China, customer expectations for website/app design, usability and features. I studied user interface design during my post-grad but the module was primarily concerned with Western markets and I’ve been meaning to find out more about the Chinese marketplace for a long time.

Having accomplished that somewhat serious research mission I decided to try something more lighthearted and explored a subject I’ve been thinking about for ages – local folklore.  It’s almost Halloween so it seems fitting to brush up on my knowledge of the ghosts and ghouls that might skulk around the Worcestershire wilderness tomorrow evening.  I quickly established that there are many tales of the supernatural in this part of the world, enough to keep me occupied with folklore for a good few weeks.  My research also brought some unexpected news because it seems to indicate I may be a witch! Here’s the witch-finders checklist and the all too ghastly evidence of my sorcery:

10 Worrisome signs of a Witch in Worcestershire

1. Tends to be reclusive.  I’m never found in a crowd these days.

2. Has knowledge of herbs and plants. I know the herbs and most native wild flowers

3. Has a familiar in the form of a cat or toad. I have a cacophony of cats and a cauldron pond full of toads, frogs and newts.

4. Talks to the familiar. Yes, I talk to the cats, regularly, and I wait for them to reply!

5. Casts no shadow. I’m virtually translucent these days so any sunshine passes right through me.

6. Does not bleed if pricked with a pin. Ask the phlebotomist, it’s verging on impossible.

7. Makes curses. Fec, feckty-fec, fecking fec. It’s true, I curse a lot. Especially when subjected to number 6 above.

8. Has unusual marks on the body. Upper right quadrant, very unusual.

9. Ginger hair. The few remaining strands are all ginger.

10. Has a pact with the devil. It doesn’t come much closer than chemo.

All I can say is I’m glad people don’t get quite as upset about witches these days because I might find myself run through with a hay-fork and/or thrown in the River Severn.  That’s got to be worse than surgery and chemo!

Joking about chemo is my way of dealing with it but like my research into Chinese websites/apps there’s a serious side to this too. Many people feel frightened when they’re told they need chemotherapy treatment and it’s OK to feel frightened.  It’s an alien experience and any alien encounter is going to be a bit scary until you know what you’re dealing with.  However, some people also say chemo is just a poison and it doesn’t save or prolong lives.  I would encourage anyone who doubts whether chemo is beneficial to consider that not so long ago some people also thought the world was flat.   It isn’t.  Most normal body cells have a lifespan.  Bone cells live for 10 – 15 years, cells lining the stomach live for just a few days.  Cancer cells are different. They tend to grow quickly, they keep growing and unlike normal cells they don’t die.  Chemo works by inhibiting cell growth, interrupting the cell’s ability to reproduce and interfering with cell processes so that cancer cells receive the instruction to die.  Side effects occur because our current chemo drugs are largely indiscriminate, they affect normal cells too.  Normal cells will recover from this process but cancer cells won’t.  (If anyone still doubts the efficacy of chemotherapy, try searching google images for ‘fungating tumours.’  This is not something to invite into your life if you’re offered an alternative option).

I won’t lie and say chemo is a walk in the park because it isn’t. But the side effects are manageable and they’re temporary. Doing chemo is no time to be a martyr. Tell the medical team what’s happening and they’ll find ways to address it.  Keep a side effects log, score each issue and show the results to the medical team – it helps them understand the situation and mutual understanding in any scenario is the best way to achieve beneficial results. Untreated cancer is never temporary, it isn’t going to go away on its own and I wish people who doubt would hear this as a lot of unnecessary suffering could be avoided. I know it can be scary, I know surgery and radio and chemo can be scary, but I also know many people who wish they’d been offered adjuvant treatment beyond surgery alone.  Being a fair witch, I’d rather endure a cauldron full of chemo than make believe the world is still flat.

You can get through a cauldron full of chemo. Taking chances with cancer is a different story.

Goldilocks and the three boobs

One of my friends recently asked how I was getting along with my new boob.  To be honest, I haven’t given it that much thought over the last couple of months.  So much has happened in such a short period of time.  When I was diagnosed with breast cancer in June this year I was offered three options: wire-guided lumpectomy, mastectomy or bi-lateral mastectomy.  The long history of early onset, aggressive breast cancer in my family beggars belief so I was initially of the view that bilateral mastectomy was the only way to forward. I simply didn’t want to provide my body with any further opportunities to let me down.  I’d seen that happen to my Mother and my Aunt and they both died before reaching the age of 50 – no age at all.  Although bilateral mastectomy with immediate reconstruction is a long and complex operation, leaving any unnecessary opportunities for the cancer to return was my main concern.

As more information about the tumour came to light through histology, MRI  and focused ultrasound scans the importance of having it removed, recovering quickly and progressing to chemotherapy took centre stage. I was warned that by opting for bilateral mastectomy, I faced a 20 – 25% risk of developing an infection in the left, healthy side since surgery itself presents an infection risk and immediate reconstruction adds extra complications.  I was given the chance to go away and think about the options over an early July weekend.  I thought long and hard.  The possibility that undetected cancer might be lurking in my seemingly healthy breast worried me a good deal. On the other hand, facing a potentially significant delay in my adjuvant treatment due to any unnecessary infection made me very nervous. I also wondered what kind of mess my chest and my mind would be in if an infection occurred and seriously damaged the reconstruction. In the end the hard facts –  my tumour was very aggressive, hormone receptor negative, HER2+ and here – made me opt for mastectomy, not bilateral mastectomy.  I worked on the basis that I needed to deal with the cancer we knew about and any other cancer that might be lurking around would be taken care of with chemotherapy.

But it doesn’t end here, Goldilocks had more choices to make.  As well as deciding which amputation to have – mastectomy is amputation of the breast – I had to decide which reconstruction to have.  Again I was presented with three options: Diep flap, Latimus dorsi flap or silicon.   I’d always thought of silicon breasts as unnatural and awkward and I didn’t like the thought of foreign materials sitting inside my body. I discounted this option almost immediately.  I was advised Latimus dorsi flap was a fairly complex procedure that would involve moving the Latimus dorsi muscle from my back through a tunnel under my arm and around to my chest. This process would produce a more natural result but could leave me with a weakness in my back and visible scars on my back and front.  Similarly, the Diep flap would be a long and complex surgery moving fat and its supporting blood supply from my abdomen up to my chest.  There would be a long scar across my stomach as well as the scar on my chest but I would end up with a flat tummy and a new breast if I chose this procedure.   Decisions, decisions.

In spite of the complexity and the scale of the operation, I told my consultant I wanted Diep flap.  I was prepared to put myself through extreme make-over style surgery.  But my ideas on my ideal new boob were short-lived because my consultant told me there was insufficient fat on my abdomen to make the new breast.  Fec! Mentally I’d prepared myself for this leviathan of a procedure but stupidly I hadn’t  considered that I might need a plan B. Double-fec!  I needed to give the consultant an answer and I only had two remaining choices. Latimus dorsi with a potential weakening of my back or silicon and the necessary weakening of my resolve.   I chose silicon.  The option I most wanted to avoid. The one I thought would leave me looking unnatural and awkward. The option that meant I would have something foreign inside me as a long-term reminder of my run-in with breast cancer.

So my friend’s question “how are you getting along with your new boob?” is a timely one.

My new boob and I get along just fine, in fact I love my new boob!  I love its shape, its size, its position.  I love the fact that I have one very faint scar instead of multiple scars all over my body.  I love that it will never head south, it’s self-supporting and it doesn’t try jumping out of my T-shirt when I go for a run.  The option I least wanted to pursue has turned out to be the perfect option.  I’m so immensely grateful to my oncoplastic surgeon who is as much an artist as she is a doctor. We’ve already agreed to make another date once chemo is through.  I’ll gladly let her take the other breast in exchange for a perfect silicon replacement.  It’s the next part of my mission to kick cancer into touch.

Being there

Although I went back to work very soon after my son was born, we’ve always had a great relationship. I’m not entirely sure how it developed; I think many things helped. Listening and just being there for him is probably a big part of it.

When he was younger we had regular stories at bedtime. We started with books like the Hungry Caterpillar and Wind in the Willows then moved on to the Harry Potter series.  We had lots of made-up stories too.  He was one of the main characters and the tale unfolded around him.   I  racked my brain coming home from the office everyday to think up a new adventure he would be part of that evening. We had some very far-fetched quests but when you’re five years old does it really matter if you defy gravity or bend the second law of thermodynamics a little?

When he was old enough we’d go to the cinema, eat ice cream and enjoy a film.  We visited the zoo and the museum regularly too, more ice cream, face-painting and watching the animals. They were much livelier at the zoo and there was a strong chance they’d poop on you in pets corner; they were easier to see in the museum with no poop-risk. We viewed kids TV together –  Captain Scarlet, Funny Bones and Star Trek, then we’d draw the characters and stick the drawings in a scrap-book. Harry Potter was the hero of the moment so I painted a floor to ceiling mural of Hogwarts in the corner of my son’s room – it was a cool bedroom for a ’90’s child.  We played in the garden or walked to the park with whole loaf of bread to feed the birds; families of ducks soon became our friends. Our outdoor adventures often involved getting muddy or falling over but either way, he’d come to me to clean him up and make any bumps, knocks or grazes better.  A hug and some savlon worked wonders.

When he started school we practiced handwriting and did math together.  I helped him make party costumes and scale models, sent him in with baking ingredients and looked forward to chocolate-chip cookies, cheesy pizza or bread rolls when he came home. There’s something very special about sampling your child’s first culinary delights, you never forget it. And he’s a decent cake baker today so there’s a lot to be said for primary school cookery lessons.  We considered ideas for homework projects and revised for exams, I encouraged him to play sports and learn music. Many a happy Sunday morning has been spent frozen-stiff, ankle-deep in mud and drenched through to the skin, returning home later to defrost, listen to guitar, flute or drums being practiced. (Yes, I’m the Mom who allowed drums in the house and yes, they’re very loud. I’ve never regretted it though.)

As he grew older we worked on some of life’s challenges. Dealing with bullies, what growing-up is all about, when to hold your position and when to back down. How to respect others opinions whilst still having a mind of your own – something I believe to be hugely important. Attaining a good pass in a subject that’s not your favourite, coping with exam nerves, university applications and learning to drive. Plus, of course, that perplexing but none the less essential topic – what girls are and why they might seem confusing for boys at times.

I’ve always been there for my son. We’ve shared many good times together and I’ve made sure he knows two key things:  1. There’s never a problem too big to be solved. 2. When it comes to problems, two heads working on the solution are usually better than one.

My son called me at 10pm two days after the last chemo to say he’d been taken to hospital.   I don’t like late night ‘phone calls, not once have I known them to bring good news and this one was no different.  He’d had an accident playing football, his sporting passion, and was waiting to find out if he’d broken his leg… something in there had made an audible snap sound and he couldn’t walk.   He was in the city A&E waiting for results of x-rays and I wasn’t there for him.  Worse still, I wasn’t well enough to get in the car and drive a couple of hours to reach him.

Now from his perspective, this is probably not as bad as it sounds. His Dad was there so he was in safe hands; he’d get a lift back to his student bed-sit once the hospital worked out what was wrong.  From my perspective it was a disaster.  I was unable to be there for him and it hit me like an express train.  Even though he’s a young man and more than capable of looking after himself, he’s still my son.  Rationally I knew the hospital would fix him up; I knew he’d get to his flat safely. But the emotional realisation that I couldn’t just grab my car keys and be by his side was very disconcerting. I felt miserable and inadequate.

For me, being there is part of being a Mom. It doesn’t matter how old he is or where he is, when my son needs help or support I want to be there.

PS. He hasn’t broken his leg, his ligaments are a different story. Orthopedic referral coming soon.

There ARE fairies at the bottom of the garden

It’s true, there are fairies at the bottom of the garden. Your garden, my garden, our neighbours gardens too. They’re in your apartment block, down at the Mall, sat on the bus or in the car behind you.  They’re on flights, in church, running down the street.  There are fairies everywhere.

What was that, did you say nah, nonsense? Am I losing it, going out of my mind? (Maybe, but not when it comes to fairies).  Stop being so fanciful I hear you say. You’ve never seen a fairy, not now, not ever….. because everyone knows   fairies   do     not    exist!

Oh really.  Are you sure?

What about the good fairy who picked up you child’s favourite toy, ran after you and said “there you go” as you strolled out of the  park? Or the one who grabbed your arm as you stepped off the sidewalk, you didn’t see that car. How about the fairy who reads angst on your face on the train journey home and asks if you’d like to talk. Or the one who helped clean you up this morning when you twisted your ankle stepping off the bus.

Do you believe yet?  No?

Ok how about these. The fairy who leaves a note saying they saw who bumped your car. The one who shouts “hey, let me” and carries your bags up that long flight of stairs. The fairy who found your wedding ring in the washroom and made sure it was returned.  Or the  one who gave you a lift home last night because you weren’t safe to walk back alone. The fairy who offered you a headache pill when you realised you already used your last one.

Beginning to believe?  Phew!

The fairies are down there at the bottom of the garden and they’re everywhere else too. The only reason we don’t see them is they look just like me and you.

Awe inspiring Autumn

I enjoy every season of the year but I’m especially fond of autumn.  A crisp, bright autumn days is a feast for the senses. Trees present a rainbow of colour, leaves carpet the ground in golden splendour and all kinds of berries, haws and hips stud the hedgerows. White-fronted geese begin to arrive from Siberia honking hello’s as they skein through a greying skyline and out here in the countryside the faint smell of wood smoke creeps into the air. I can immerse myself in the sights and sounds of an autumn day and forget just about everything else that’s going on, no matter how difficult or urgent it might be.  As the nights draw in and temperatures drop, I retreat to cosy evenings by the fire, a mug of hot chocolate and a good book.  When I read I’m equally engrossed, living with the characters in their storyline and forgetting about my own.  

Today was one of those bright, crisp autumn days and I made the most of it with my first venture away from home for several months. It wasn’t an action packed day, just a short car journey into Shropshire and an hour or so walking around the ruins of Clun castle.  But it didn’t need to be action packed because the landscape in this area is very beautiful, rolling hills, forests and farmland stretching out as far as the eye can see.  It’s also exceptionally quiet.  The only sounds are natural ones; cawing crows, chattering finches, the occasional wayward sheep.  I found the walk both peaceful and uplifting, food for the soul as well as the senses.  As a creature of simple comforts and I could happily live all my days in autumn if they were just like today.

“These moments of escape are not to be despised. They come too seldom” – Virginia Woolf, The Waves.

Toast (and the oncologist)

Yesterday porridge and maple syrup. Today toast.

Why am I excited by a humble piece of toast? Because it smells as it should (many things don’t), it tastes delicious and it satisfies that empty but not sure what to eat feeling.  The sensation called appetite is attempting to make a come-back.  (It’s ok, you can come out, no-one is going to poison you this week).  It’s reassuring to know my appetite hasn’t taken itself off on a round-the-world cruise, it’s just been hiding under a fall-out shelter waiting for chemo nuclear winter to subside.   Today I thoroughly enjoyed toasted granary bread with the mandatory lashing of melted butter.  Who’d have thought toast would make it onto a top ten favourite meals list?  Forget caviar or truffles, granary toast is the nearest thing to heaven on earth and it gave me that nice warm-on-the-inside fuzzy feeling too 🙂

Now it’s 9 days since I last saw a hospital – far too long to be away from all things shiny, sharp and pointy – so I trudged off to see the oncologist this morning.  Last time I saw him he was running two hours late.  I suggested his waiting room was busier than God’s and maybe he should ask the other guy to lend a hand.  I also asked if I could have a badge for good behaviour – I hadn’t drawn on  the walls or thrown-up in the corner. It was tempting.  I didn’t get a badge but I did get Emend, possibly the best thing a good chemo girl can be rewarded with. (Toast, anti-emetics, I’m easily pleased.)

Today was just a 45 minute wait and there were no sharp pointy things to contend with; always a bonus.  My oncologist is a nice fellow, quiet, studious maybe a little on the shy side.  We discussed drug regimes, side effects and quality of life.  I told him unless I could swing from the chandeliers at 3pm every day, twice on Sundays, I’d have to give quality of life B minus, more effort required  It made him laugh.  So my new mission is to find a way to make the oncologist laugh whenever I see him – he has a difficult job and I’m not sure I could do it.  The very good news from today is that we have further potential to tinker with my drugs regimes so next time might be a little less taxing.  Did I say tinker? I meant fine tune in a controlled and highly scientific fashion.  Anyway, I live in hope and in the meantime I’m going to make the most of appetite’s reawakening 🙂