Stocking confessions

For anyone who thinks stockings are a throwback to the 40’s and the post-war frenzy of the nylon riots, fear not. Stockings are alive and well and making a huge comeback in my household and the homes of countless other women across the globe. These stockings are immensely functional, have a hint of sheen, an open toe and a block heel. They also have a small seam. They’re manufactured by a German company but I don’t think it’s Falke, which is a shame because Falke make good stockings. Falke or fake, I’ve been persuaded to wear these very special stockings for at least the next two weeks because I’m reliably told they are a lingerie lifesaver, for me and others like me.

Of course no stocking is ever perfect and often we have to contend with bad length, limited silkiness, wonky seams and the like. Length and texture are certainly a bit challenging though it’s fair to say I’m tall. A further downside is that they only come in white and the denier rating is a bit on the high side, easily twenty-times greater than the best pair of 5 deniers I ever owned. (Back in the days when stockings were at least as important as non-chip nail polish, 4 inch heels and a big can of Elnet.) However as I’ve already indicated they’re extraordinarily functional, extremely unlikely to ladder or run, afford excellent durability – they’ll survive at least 100 washes in the automatic machine but more likely 10,000 – they’re warm, and of course their unique selling point is the all important lingerie lifesaver label. Who could possibly resist?

I have a love-hate relationship with these stockings. They represent all that’s been difficult in my life yet they also represent hope, the chance of a future. They’ve kept me out of trouble on at least 5 separate occasions including today and will do so for another coming up in the not so distant future. It appears they’re very well designed to prevent unwanted pregnancies, ward off perverts (bet you didn’t think stockings could do that) and double-up as flight socks for anyone planning to jet across the planet or sign-up for Virgin Galatic. I suspect there’s every possibility of remaining a virgin for centuries in these beauties but its also reassuring to know I’m very unlikely to suffer a DVT (deep vein thrombosis) following  my trip to theatre today.

No, I didn’t see Miss Saigon but I did meet three very nice male anaesthetists, a lovely lady theatre nurse, a fabulous and stunning staff nurse and of course my all time favourite Miss M.  I didn’t have to wait around as I was first on the list for surgery which is good for all sorts of reasons and I think (hope) I’m now at the end of all cancer-related surgeries, revisions and repairs. Das ist alles as they say in Falke.

As with the stockings, rarely is anything completely perfect and though I warned of the heinous condition of my left side veins the consultant anaesthetist suggested the junior anaesthetist should “go for the one looking sort of ok-ish below the left index finger.” So he did, it didn’t work, I felt incredibly sorry for him – its my fault not his, and consultant anaesthetist then had to prod my right hand which was equally touch and go for a while. We got there in the end and consultant anaesthetist apologised to his junior and to me saying “I’m sorry, we should have listened as you do know your veins well.” Far too well for my liking, an intimate knowledge in fact, and so accurate that I pity anyone who has anything to do with them. Another reason on the long list of reasons why I’m very glad das ist alles on the cancer-related surgery front. (Gall bladder next and that really should be it, all done, cyborg here I come!)

After morphine and Fentanyl for the operation itself, a combination that makes me wonder why anyone would become an addict because the effects are so way out they are completely bewildering, not enjoyable, I’ve resisted any further pain killers and feel much better for it. After swimming in drugs through much of 12/13 I now steer clear as far as possible. This post-op discomfort is well within the realms of manageable, a reflection I think on the skills of the surgery team. I’m told healing is 3-6 weeks, nothing at all strenuous for 6, no driving or work for 3. That’s a real challenge because my job needs a lot of attention, the university is extremely busy, we have students to recruit, systems to develop, projects to deliver and as ever, IT problems to resolve.  Aside from all that, 3 weeks of daytime TV is almost certainly bad for my health (and sanity) and my favourite recuperation past-time – growing things to eat –  is off limits. No digging, hoeing, mowing or sowing.

So while I contemplate what to do while doing very little and avoiding as much daytime TV as possible I leave you with a photo of my souvenirs from today – port and starboard – complete with coloured gauze and post-surgery puffiness.

I couldn’t post the stockings, they’re far too risqué!

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Trapped in a Well with a Crocodile (or cancer)

Have you ever been trapped in a well with a crocodile?

 

image

ONE FALSE STEP… (Image: http://www.sundayobserver.lk)

Captive in a limited space, confined and confused by the darkness, unable to gain a foothold because you can’t see through the dense thunderhead all around you. Making sense of this foreboding abyss with its slippery walls, isolating silence and icey cold waters is petrifying… and that’s not all.  Somewhere in the well lives a crocodile. It’s in there but you have no idea exactly where it might be. It might be far below  or about to break the surface. It might be about to seize you in a death-roll or look you straight in the eye. It might bite you once then leave you alone.  You know you need to get out and all the while you imagine how powerful that crocodile is, you sense its huge mouth and razor-sharp teeth.  You want to break free yet you know the crocodile might just as easily  swallow you whole.

When I was diagnosed with an aggressive cancer in 2012 my relationship with my body changed.  Instead of seeing it as a safe haven, a place where my sentience could frolic, it became the well.  I was trapped inside and in there with me was a crocodile called cancer.  I knew there was no way out of the well and I knew a death-roll with a crocodile was a bad idea.  Losing part of my body was better than losing my life and so, for me, the journey through surgery and chemotherapy was better than letting cancer swallow me whole.

Whenever I could I tried to turn any negative thoughts into more positive ones. Having surgery meant removing the obvious signs of cancer from my body and that was a good thing.  Undergoing chemotherapy (something that frightened me because I’d witnessed my Mother’s experience) meant targeting any remnant – rogue cells that lurked in my body as yet unseen. Although the side effects were unpleasant, the chance to stop cancer biting me again made treatment  worth the time, effort and side effects I encountered.

We all have different views on our bodies, on our femininity or masculinity (because men get breast cancer too). We all have different views on what makes us who we are, which pieces of ourselves we love or loathe, the things that make us ‘normal’ or ‘a freak.’ In Western society it seems so much of who we are becomes entangled with how we look that any affront to our physical wholeness becomes an assault on the very essence of our being.

When faced with cancer the prospect of surgery means facing the prospect of never again being physically whole.  Keeping a sense of perspective when nothing much makes sense is important. I realised quite quickly that my life would  not depend on physical wholeness, but it would depend on eradicating the cancer that had taken root in my breast.  Viewed in this way the prospect of mastectomy also became an opportunity to prolong my life.

As it turned out, mastectomy was the correct choice. Aside from the cancer I’d discovered for myself there were areas of high grade DCIS and atypical hyperplasia, both of which had the potential to become new cancers in time.  Having exchanged one cancer containing breast for a silicon fake it seemed counter-intuitive to retain the “good” breast in the hope that the cancer crocodile would only bite me once.

Two year’s after my initial cancer encounter I was able to complete risk-reducing surgery – mastectomy and replacement of the remaining breast with another silicon fake.  I can honestly say I’m glad I did.  As research progresses we learn more and more and it seems DNA changes are already present in the healthy breast tissue of women with cancer. My family history made having breasts a game of Russian roulette. If anything, I wish I’d fought the system more rigorously to undergo risk-reducing surgery before finding myself facing cancer head on.

Its been a long journey. This summer will be four years since my original diagnosis and my trips to the operating theatre are still not quite complete.  In a few weeks I’ll be in for some revision work, things that need to be taken care of following the original surgery of 2012. In the grand scheme of things it’s very trivial, a small price to pay for the four years of life I’ve enjoyed so far.  I’ve learnt that my body is not invincible, that hidden dangers may lurk beneath the surface and things go wrong even if we do our best to adopt a fit and healthy lifestyle.  I’ve also learnt that I don’t really care about my fake breasts, my Herceptin damaged joints, or my lack of physical strength, I can exist quite happily with all those little niggles.  The things I care for most – my family and friends – can only be taken care of if I’m here so preserving my life was always going to be more important than preserving physically beauty, ‘normal’ femininity or bodily wholeness.

Small miracles are miracle enough

One month on from surgery and everything appears perfectly usual from the outside. In clothes it’s impossible to tell that my chest looks like the chest of a plastic doll someone once tried to saw in half. The latest scar remains red and fresh with the added benefit of some stuck-fast super-glue. Aside from that the healing process is going well. Skin knits together incredibly quickly.

I’d never heard the term ‘spitting stitches’ before this surgery so when I discovered a piece of blue synthetic filament protruding through my skin (not dissimilar to a nylon guitar string or thick fishing line) I guessed it had to be a wayward stitch. It was a few inches away from the scar which threw me at first. Then I realised the internal scar is bigger than the external scar and this piece of thread aligns perfectly with the joint between me and my newly introduced ADM pocket. Nothing to panic about.

There are all kinds of suggestions on Google as to what to do with a spitting stitch. Anything from phoning the hospital right away to pulling it out with tweezers or cutting it off as close as possible to the skin with nail scissors. I decided to keep it clean, apply a little antiseptic and leave well alone until my next consultant appointment. When I saw Miss M. she was hugely apologetic, as if it was somehow down to her rather than a failing in my thin and stretched skin.  “I’m sorry, this happens sometimes” she said, “if I can see it I’ll cut it off otherwise it will fall out on its own in time.” In a couple of minutes it was clipped short and disappeared back beneath the flesh where it will eventually dissolve. Miss M is very happy with post-surgery progress and my general level of wellness since our previous meetings. We won’t meet again until our usual annual check-up in September which means this summer will be mine to do with as I wish. The first in several years.

Strange sensations in my chest continue to confuse my brain. The pectoralis muscle starts to twitch and stretch each morning shortly before I wake. It’s completely involuntary and enough to stir me from sleep. There is no pain but its odd. Movement in my arm is almost returned to normal, no heaviness or pulling so long as I take care not to strain – no lifting or carrying heavy objects yet, no twisting, turning or driving. All those things will resume in time.

I don’t enjoy recovering from surgery, it always seems to take so long and much effort is required to rebuild lost strength after taking things ‘easy’ for several weeks.  I am happy for small miracles though – a problem-free surgery, clear histopathology and no signs of infection, implant displacement or rejection of foreign materials. I may look like some parody of a plastic doll, scars and all. I may be physically less able than I was before and my joints may never heal, but I’m well and that small miracle is miracle enough.

Celandine - the light bringer

Celandine – the light bringer

Thoughts among the flowers

I love flowers.  All colours, all species, scented or unscented.  It makes me happy when I see buds on the plants outside the window because I know in a short time the garden will be awash with blooms.  I was lucky enough to receive some beautiful flowers recently so the house is surrounded by blossoms inside and out.  Flowers buoy my spirits simply by looking serene and picture-perfect, the work of Mother Nature at her very best.  If they smell nice that’s a bonus and the bouquets in the house smell delicious.

Though I am far from picture-perfect (and definitely not delicious) I remain reasonably tranquil, so much so that the newly qualified nurse who carried out my pre-op assessment was amazed at my lack of concern regarding tomorrow’s surgery.  She was a nice person, kind and empathic.  She frowned about my experiences, they corrupted her sense of right and wrong.  This happens to too many good people she said.  I reminded her cancer doesn’t stop to consider whether you’re good, bad or indifferent, it just happens and we have to get on with it.  My way of dealing with it has been to generate some space, a gap between the me who exists today and the me who went through all that crap.  The little distance I’ve created – as much as a completely different life, 4″ scar, bad joints, skin, nails and hair allow – is enough to categorise that as past.  She was inspired by my positivity and resolve.  I smiled.  I never had any other choice.

She asked if I was worried about another operation… how did I feel about a further invasion of femininity after enduring numerous procedures, major surgery and follow-up treatment for months on end.  I smiled again and laughed. At this point she might have considered I was a little insane, shrugging my shoulders like an unruly child who is yet to gain a sense of mortality and would pay it no heed when she did.  No, I am not worried and I won’t be a quivering wreck in the morning.  After all the things that have happened  there’s nothing much left to fear.

I know I should probably be just a tiny bit concerned.  Reason tells me so because there are always risks with general anaesthetic, infection and such. Surgery doesn’t bother me though – like breathing it will happen and I’ll know nothing much about it. As for femininity, it doesn’t feature as highly on my list of priorities as avoiding cancer, keeping clear of more chemo, or facing an imminent death.  With those things on my priority list femininity gets demoted into the ‘nice to have but not essential’ category.  I always knew there’d come a point in my life when my aptitude for logic and unerring pragmatism would prove useful.  Looks like I’ve finally found it.

 

This body may be mutilated and knackered but boy is it resilient!

My friend Maurice at Duck? Starfish? but…23  inspired me to write about resilience following his comment on my ‘side effects’ page.  Please visit Maurice’s blog because not only will you find excellent writing, you’ll also learn a lot about Newfoundland and see that Maurice, the folks he works with and the communities in places like d’Espoir, Francois and Burgeo must be pretty resilient too.

Dictionary definitions of resilience say it’s the ability to spring back or rebound.  In the case of illness or adversity, it is the ability to recover quickly.  I am not sure how long my recovery will take, I am told anything up to 18 months to be on top form again so I think perhaps there is another angle on resilience.  For me being resilient also means enduring difficult circumstances, keeping going in spite of everything and having a steely resolve to overcome chaos and crap on a regular basis.

Finding out you have cancer or any life threatening illness is, of course, a shock but with cancer you often don’t realise you’re sick because early on there may be no adverse symptoms of the monster within.  In my case I felt well, I had energy and I was physically quite strong.  I had been more tired than usual but decided that was just my long-term relationship with pernicious anaemia.  The only sign of cancer was a rather innocuous looking dimple that in turn lead me to discover a lump the size of a broad bean.  At that point I didn’t really feel unwell.

Broad beans, shelled and steamed

Broad beans, shelled and steamed (Photo credit: Wikipedia)

When I found out I needed surgery followed by chemo my world turned upside down.  The one thing I didn’t want to face under any circumstances was chemo… chemo-induced complications killed my Mum (and 16 years on I have not been able to forgive it for taking her away from us when she was only in her 40’s).   What if it killed me too?

On the other hand, I know what untreated cancer does to people and animals and there’s no road to happy ever after if it’s allowed to take control.  My first call for resilience came when facing the prospect of chemo, before my surgery had taken place, before I knew what havoc cancer cells were attempting to play inside a body I knew I could no longer trust and before my FEC-TH regime had even been prescribed.

My next call for resilience came with surgery.  Breast surgery for medical reasons is not the same as breast surgery for cosmetic reasons.  Operable cancer means surgery is mandatory.  You can’t change your mind and tell the surgeon “you know what, put the scalpel away because I’ve decided I’m happy with my breasts just the way the are.” To be completely accurate, it’s possible to refuse any form of medical intervention but in the case of cancer that means it’ll take hold… no happily ever after if that’s the case. For me, surgery was the only choice because death by cancer is something I’d very much like to avoid.

I’d never experienced any major surgery previously but the thought of it didn’t bother me unduly because I just wanted the ELB (evil little b*stard) out.  As it happened, the surgery itself and the post-operative recovery period were less challenging than I thought they might be.  My body recovered quite quickly.   It took a little longer to make peace with the psychological impact of this surgery and it called for more resilience because I had to learn to like myself again, scars and all.  I had to accept that this (mutilated) body is all I have to live in so I might as well appreciate it.  This appreciation had to extend to the blob of silicon and 6″x 4″ piece of pig intestine now residing in my chest too.

An article in Psychology Today says “Resilience is that ineffable quality that allows some people to be knocked down by life and come back stronger than ever. Rather than letting failure overcome them and drain their resolve, they find a way to rise from the ashes. Psychologists have identified some of the factors that make someone resilient, among them a positive attitude, optimism, the ability to regulate emotions, and the ability to see failure as a form of helpful feedback. Even after a misfortune, blessed with such an outlook, resilient people are able to change course and soldier on.”

Undergoing 5 months of chemotherapy called for resilience; the challenges it presented came in the form of side effects that made me go from looking and feeling relatively normal to looking and feeling abnormal and unwell.  Looking like a cancer patient can change the way you think about yourself if you let that happen… you simply have to get used to the way other people look at you.  Choosing not to be defined by the chemo-chic look takes quite a lot of steely resolve; dealing with side effects definitely requires some resilience. If you want to read about side effects take a look at that page, it describes what happened to me.  Fortunately not all of these things happened all of the time but several of them happened most of the time.  I tried hard not to let this get to me; sometimes I succeeded and sometimes I didn’t.  I worked on the basis that a positive attitude is half the battle.  I can be pig-headed at times as well as pig-chested – I wasn’t about to let cancer screw my life up and make me miserable every waking hour.

Until recently I’d anticipated going through chemo would be the biggest overall test of my resilience and ability to endure.   I think that assumption was incorrect because the post-chemo limbo land is now calling for a fair amount of resilience. When you go through chemo you expect to spend some time feeling unwell, to have some side effects and be less able than you were before the poisoning treatment began.  Once it’s over you expect to feel better. Coming through chemo and still feeling a shadow of my former self a month down the line is a real challenge.  I want/expect/feel compelled to do things. Simple things like going for a long walk, running up and down stairs or exercising on the cross-trainer and bike.  My mind is immensely willing but my body states in no uncertain terms “I don’t know what the hell just happened but if you think you’re going to make me run for 10 minutes you can think again sucker!”

Dealing with the frustration this causes and the feelings of being inadequate/weak/somewhat pathetic require more resilience.  It would be very easy to let this period of post-chemo alienation drain my resolve, to move from frustrated to angry and then from angry to despairing.   Fortunately as Psychology Today points out, being resilient means having the ability to regulate emotions and see failure (in this case my knackered body) as a source of helpful feedback.  My body is knackered because it’s had a tough time and I know I cannot expect the things I asked of it a year ago at this very moment. That would be both unfair and unwise given all this 5’9″ frame has endured.  Once again I find I am learning to like myself as I am, to accept there are things I cannot do right now and in time that will change. Normal service will be resumed when the body is good and ready.

A mutilated and knackered body is all I have to live in and I appreciate it very much.  It has an amazing ability to endure some very adverse situations.  I hadn’t realised how much resilience resided in me, physically and psychologically, until I needed to use it in earnest.  That said, I hope I never have to call on it again.

Fortitude – Facing a force 12 storm head-on in 2012

Porthleven, Cornwall. Beautiful on a still day, dangerous on a wild one. Image credit: Cornwall365.co.uk

Porthleven, Cornwall. Beautiful on a still day, dangerous on a wild one.
Image credit: Cornwall365.co.uk

Today’s theme is fortitude, another of the cardinal virtues.

Fortitude: Noun.  Strength & firmness of mind; resolute endurance; courage in pain or adversity.

It’s fair to say 2012 hasn’t been too far short of facing a force 12 storm head-on while trying to keep everything together, as normal as possible, for the sake of those around me. Even during the times when I’ve been feeling anything but normal.

My call for fortitude began at the tail-end of 2011. My Mother-in-Law died, a difficult and convoluted situation that took a toll on me. I felt sorry for her; her life had been a series of unforeseen misadventures resulting in mental breakdown and institutionalisation in one shape or form since the age of 25-ish.  During summer 2011 she’d been in and out of hospital but was returned to her care home under the auspices of being better.  She wasn’t and died a short while afterwards.  I’m not sure I’ll ever stop thinking she had no real life at all and that’s what made me so sad for her.   I organised things, sorted out probate, helped clear her room all at a time when I was starting a secondment into a more senior role at work.  My boss had found a great new opportunity and his boss announced she’d be leaving by the end of the year too.  All change.

In January 2012 I was more than half way through the secondment, waiting to learn if I’d be confirmed in the role permanently. I had no idea, the months ticked on and I was still none the wiser.  I eventually found out after the secondment expired; I was pleased to learn of the promotion but news coming so late in the day took the shine off things somewhat.  As ever I threw myself into the role, worked my socks off and encouraged my teams to do likewise.  Some of our efforts were appreciated.

I realised from my very early career in Human Resources and my long-term career in Technology that some companies place little value on departments they misconstrue as ‘support’ or ‘service’ functions.  It’s not this way in all industries but some are behind the curve, they haven’t joined the dots yet.  It’s not worth stressing over but can be frustrating for those who see successful businesses holistically rather than in silos.

In April shortly after the promotion I noticed I was tired, very tired. I didn’t feel right.  I thought something looked different, went for various tests and investigations and remained staunchly positive throughout. I suspected the odds might be stacked against me; my family history is too damned predictable but I wouldn’t go along with the odds until they were confirmed.  Core biopsies followed at the end of May.

I’d already booked a week of activities to celebrate my son’s birthday in early June so was determined not to let him down.  I did my best to carry on regardless through this period of uncertainty and doubt. No-one’s 19th Birthday’s should be overshadowed by unconfirmed news that Mom might have cancer.  We had a good time and he has some great memories including his first trip to a West-End show.

On 12th June the odds became reality and for a month the reality kept getting worse.  The tumour is small, less than 1cm, but invasive.  Oops no it’s bigger, 2.4cm as it’s surrounded by an area of DCIS and LCIS (which, by the way, would also become invasive in 3 – 5 years).  The grade is 2 – no wait, it’s 3.  It might not be as contained as first thought, the MRI shows a lot of anomalies. Oh and it’s HER2 positive, that will be tricky.

Hello and welcome to the world of aggressive, difficult to treat breast cancer aged 42.  “This is treatable” my consultant said “and fortunately Herceptin is now funded for all HER2+++ women….  But only if you have chemotherapy.”

Being told you have cancer is never going to be good news but the worst news for me was chemotherapy.  I saw what it did to my Aunt and my Mom and I’ll never be able to shake those images from my mind.  I didn’t want that to happen to me. I don’t want it to happen to anyone.

RNLI Shannon Class Lifeboat. Credit: RNLI

RNLI Shannon Class Lifeboat. Credit: RNLI

After a week moping around, not eating, talking or sleeping I realised no-one was coming for me with a lifeboat.  I wasn’t helping myself either so I’d have to get my arse in gear, muster up some fortitude and ride this humdinger of a storm through.

I researched and researched and researched, went to every appointment with a list of questions and made sure to get answers.  I took along the latest papers, asked for explanations of conflicting findings, weighed up the risks and rewards of each surgery, surgical technique and the chemotherapy regimes I was offered.  And then I had an epiphany moment.

I realised I could just as easily get hit by a truck or obliterated in a car accident (I drive a many miles for work).  In fact there are plenty of other things that could kill me so why focus on cancer alone?  Why focus on any of them?  Life is for living and after the epiphany living is what I set out to do.

This change in perspective was fundamental in shifting my thoughts about myself and others. What really matters, the preciousness of time, finding something positive, inspiring and beautiful every day – even when the force 12 continues to howl all around me threatening mortal danger.  Why make my own life miserable, consumed by negativity and fear? Worse still why inflict that on those around me, why cause them more pain and concern than they undoubtedly already carry.

Of course there have been bad days; there have been some very bad days. This – investigations, surgeries, scars, chemotherapy, side-effects – is no walk in the park on a bright Spring morning.  There’ll probably be some dodgy days in future too because I have more surgeries to come in 2013. C’est la vie.  But finding fortitude – strength and firmness of mind; resolute endurance; courage in the face of pain or adversity – has been a big help. It’s an inner strength that carries me through.

Six months down the line from diagnosis and half way through my various treatments I have no idea what the future has in store for me. Or how long it will last.  But none of us ever knows how our life will map out, we don’t come equipped with a crystal ball at birth we just kid ourselves that we do. Throwing away the illusions, the ifs, whens and maybes lets the beauty of today shine through… even if a force 12 storm is trying (and failing) to sweep me off my feet.

Fortitude – I highly recommend this cardinal virtue.  Try to seek it out, when you find it hold on to it.  Where it comes from I do not know but if I could work out the formula I’d manufacture it and offer it free to anyone who is faced with the onslaught of one of life’s force 12 storms.