In about eight hundred days…

imageThe here and now may not be perfect but its an altogether better place than where I was around 800 days ago. Eight hundred sounds like a lot when you add it up in days, but in years it’s less than three. Just a tiny fraction of the longevity most of us hope to achieve in our lifetimes.

Long before my tussle with cancer began I developed a trait that has proven increasingly useful, particularly during the most challenging four hundred of the eight hundred day mountain climb I’ve taken on in the last few years. Though I haven’t consciously cultivated it, and on occasion even considered it problematic, looking back I can see just how helpful it’s been when the world seemed to be coming undone. Some might call it mindfulness or being in the present, others might say its selective amnesia. Whatever it is and however it happens, closing down frightening, painful or just plain bad memories so they no longer invade daily thoughts or conjure negative emotions is something I now consider a blessing. A body marred by the evidence of physical surgery and some serious chemical bombardment doesn’t need to retain a matching set of psychological scars.

As far as I can tell being anchored in the past makes it impossible to live in the present or imagine anything might have the potential to be different in future. Like many others dealing with cancer, my future is far from guaranteed but being permanently bonded to the fear, confusion and isolation that come with a cancer diagnosis isn’t something I want to sustain. Taking the lessons from past experiences is important, constantly reliving them isn’t. Closing the door on negative memories and the emotions that went along with them has helped me remain relatively calm and stable during some very unstable situations.

It’s about two and a half years down the line now and small signs of normality continue to emerge. A visit to the oncologist last week resulted in confirmation that all seems well so from now on we move to annual rather than six-monthly check ups. There are some things that won’t improve or mend – ankles, knees and hearing – but that’s fine, I can get by with them as they are. The same isn’t true of cancer and though I like my oncologist, I like the thought of a year away from him much more. Being able to go out in public without looking like a medical experiment, walking like a very senior citizen (well over 100) or having what appears to be a constant cold are all welcome steps forward too. They’re small steps but that doesn’t matter because they all contribute to renewed invisibility – it’s hard for chemo patients to blend in! – improving agility and a general sense that slowly but surely, health is beginning to return.

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The Oncologist

Tomorrow I’m heading back to see the oncologist.  A quick recap: he is studious, often serious and I was told some people find him rather terse. He also came highly recommended on the basis I could cope with a scientist who holds a passion for his subject, has considerable clinical trials expertise and presents the facts in a sans-sugar-coating, say-it-as-it-is kind of way.  It’s true he wouldn’t be everyone’s cup of tea because small talk and social pleasantries aren’t his thing. I knew I could live without those but the same could not be said for a well-constructed third generation treatment regimen designed to tackle very aggressive HER2+ breast cancer.

When I was in active treatment I made it my mission to find some way to make the oncologist laugh every time I saw him.  Despite the various cancer shenanigans and associated torments I managed to retain at least a smidgen of my naturally playful, sometimes mischievous (in a harmless kind of way) spirit. So tomorrow I’ll be in his office finding another way to make the man who averts death smile and laugh because let’s face it, 12 hours a day 5 days a week managing various forms of cancer is hardly fun, even if your success rate falls in the upper quartile.

I haven’t been back to the hospital for some time now and if it weren’t for the follow-ups I’d avoid going back there at all costs.  It’s the place where my life switched from relatively stable to completely FUBAR in a matter of moments. It’s the place I associate with a tranche of memories I’d happily erase if permanent amnesia happened to be available in tablet form. It’s a place where the staff are brilliant, my treatment was excellent and as far as I know all traces of the mutant cells terrorising my body were eradicated. Unfortunately it will always be the place where cancer and me were forced to become far too familiar with one another. That acquaintance lasted much longer and caused far more damage than any of us is led to believe so I might just have to strangle the next person who says breast cancer is an easy cancer, the best kind of cancer or anything that remotely infers treatment and recovery is a walk in the park. Oops… I lost my playful spirit for a moment there.

Thankfully my oncologist chose to be an oncologist instead of an actuary, a computer programmer or an astrophysicist. For that I will be eternally grateful. For cancer I will not.

Half a World Away

Goldfinches against a Cyan Sky

Goldfinches against a Cyan Sky

 

It’s a beautiful morning. Since the beginning of December I can only recall one other day without rain and that seems like a very distant memory. At work on Thursday we joked that the Mayans may have correctly predicted the end of the world – it’s simply coming along a bit later than expected. They were ancient people without atomic clocks so what’s an extra year or two on top of a few centuries?

Looking at the clear blue sky today is not the day it all ends and I’m happy that’s the case.

This time last year it was snowing. Clumps of pristine white snowflakes were swirling around me like the stuffing from expensive duck down pillows. January and February both saw fairly significant snowfall, at least by UK standards. Out here in the countryside the drifts were over six feet high and I walked the lane crunching my way through the freezing blanket to take photographs in a completely silent landscape. When snow muffles everything the silence takes over – no road noise, no rustling trees – and with silence comes stillness. The fields and hedgerows slip into a moment of frozen tranquillity.

Silent stillness always draws me out into the chilling air. Wrapped in a thick winter coat, huge scarf, fingerless gloves (so I could operate the camera) and my woollen cable-knit baker-boy cap I trudged down then up the lane, a walk that normally takes 10 minutes but needs at least 20 in heavy snow. The horses at Holly Farm had taken their leave and retreated into the stable but every tree and shrub along the way was alive with small birds foraging for food. When the snow comes the need to eat overcomes the need to fear humans, the birds will take seed at your feet if you’re still enough. After walking the lane I was cold and tired but a cup of hot chocolate soon addressed both.

How do I recall this scene so readily when it was a year ago? I’d just received my final round of Taxotere. I was hairless, as pale and translucent as an undernourished vampire and completely strung out on steroids. There are few things I detest and dexamethosone is one of them so if I never have it again that’ll be just fine with me. Looking back the whole scene – the snow, the chemo unit, the regular blood draws, the side-effects – it feels half a world away. It almost seems unreal and if it weren’t for the tale-tell signs all over my body (and embedded in my psyche) I could almost convince myself it was a very bad dream.

Almost.

Today there’s no snow. The tall trees opposite the window are gently rippling so there’s a breeze. The sky is the most beautiful cyan blue and bright yellow winter sunlight, the kind that is brilliant but holds no blazing heat, is streaming into the room. Small birds are chattering outside the window and the cats who were exiled to the conservatory last year, are happily curled up by the fire for an after-breakfast siesta. Today is a very beautiful day and it seems that all is well in my wonderfully bizarre, confusing and ever-changing world.

Half a World Away

Wilful Insubordination

It’s 15 months since my original diagnosis, the diagnosis that seemed to spell doom because just about all the features of the tumour pointed to invasion, aggression and far from satisfactory medium/long-term disease free survival.  Trawling the World Wide Worry-maker in hope of some success stories left me shell-shocked and saddened. The number of very young women (and later in my research men too) facing their final hours inside a couple of years of this kind of diagnosis was, quiet frankly, frightening.  I stopped visiting certain forums because the scale of lost life and lost love was too painful at a time when the extent of my own challenge was yet to be confirmed. It took three months to establish exactly what I was dealing with and what it would take to address it.

Much has happened in 15 months. A mastectomy and immediate reconstruction using acellular dermal matrix, three rounds of FEC chemotherapy followed by three rounds of Taxotere. Nine Herceptin infusions. Steroids, non-steroidal anti-inflammatories, a bi-lateral salpingo-oophorectomy. A permanent needle intolerance that developed out of nowhere and seems to be going no place fast. It’s hard to believe this sack of bones and blood is a body any more. From the neck down its more like a modern masterpiece of medical experimentation, a Damien Hirst of intricate and iatric well-healed scars but scars nonetheless.

It would have been easy, very easy indeed, to give in to the monster; to accept this kind of diagnosis doesn’t turn up too many long-term survivors. By long-term I don’t mean the 5 or 10 years medicine considers when calculating statistics. I won’t even have reached my mid-fifties by then. I mean proper long-term, the forty or fifty year kind, the kind where I could safely be described as a little old lady. Or a cantankerous old bag, I don’t mind either way. Giving in to tyrants has never been one of my biggest strengths though.

Yesterday I had my first “routine” follow-up appointment. The English language is so laughable at times. Routine means usual, ordinary or everyday. Funnily enough I was not in the habit of regularly baring my breasts to complete strangers. I most certainly wasn’t in the habit of letting complete strangers touch me. Not so long ago anyone trying that might find themselves in possession of a sharp slap. Time and context changes everything.

Have you ever wondered how strange it might be to talk about work and children and holidays for 15 minutes while someone you barely know thoroughly examines a part of your anatomy normally reserved for those with a privilege pass?  A year ago I’d have considered it very strange. Today it is almost routine.  In these situations the talking me exists somewhere separate from the hunk of meat laid out on the examination table – the hunk of meat that happens to be the only home I have. The talking me converses with humour and gratitude about the past 15 months and she is even coherent enough to answer that yes, there are a few areas of the reconstruction that could be improved upon now the foundations have settled. The nice-but-barely-more-than-a-stranger consultant is kind and enthusiastic, suggests those improvements are completely possible with liposculpture, a procedure that is far less traumatic than those that went before.  The talking me laughs and says you can take as much fat from my butt and stomach as you like because there’s plenty to give. Not this year says friendly consultant because now we need to give your body proper time to recover from everything it has endured. The talking me wonders if it’s just my body they’re thinking about.

I spoke to my father the evening before this appointment and joked that if anything untoward showed up following a treatment regime that would easily pole-axe Attila the Hun then I must be truly damned.  The appointment came and went and I am not damned, at least not at this moment. There is no sign of disease today.   I breathe a small (and in no way complacent)  sigh of relief whilst giving cancer the regal two-fingered salute it deserves.

The past 15 months has been an exercise in wilful insubordination. No doubt the rest of my life will be spent perfecting that skill.

FUcancer

Courtesy of Cancer Research UK

“Most of the important things in the world have been accomplished by people who have kept on trying when there seemed to be no hope at all” -Dale Carnegie.

 

Almost incognito again

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Being incognito suits me. I’ve never wanted fame or fortune, celebrity doesn’t really mean anything to me and money is just something I use to pay bills, put food on the table and support my son. Undergoing chemotherapy threw a spanner in the works; it made it impossible to remain anonymous. Passers-by didn’t know who I was, they couldn’t name me, but they certainly knew what I was.  I was the person drawing pitying glances, puzzled stares or desperate attempts to avoid eye contact.  I was the thing many people don’t want to name.

Cancer, embodied. A walking, talking materialisation of the scourge a lot of us dread as much as death itself. The dreading isn’t without cause – I know as many people dying of cancer as I do surviving it. Many are young, too young to go through what they’re going through and much too young to be facing death. They have no choice, they won’t be cured in spite of surgeries, treatments, living healthily or fighting to survive. They’re being cheated out of life by the biggest cheat I know.

Because cancer is a cheat and because it can resume its destructive course at any point I’m much more conscious of time.  The red sand in the Wicked Witch of the West’s egg timer is never far from my thoughts; time slips by too easily. Every moment is precious, even the difficult ones. This year more than all the years that have gone before I’m making the most of every moment and that’s how I know I’m almost incognito again.

I’ve been able to get a hair cut, (it’s still boyishly short but at least it bares some resemblance to being styled that way), go out for a meal and go on holiday without turning heads, evoking whispers or sorry glances. Shop assistants no longer ask if I’m ok and I don’t look (or feel) like I’ll faint if I stand for more than a minute or two. I’m not a disgusting translucent yellowy-grey colour anymore either. I’m approaching normal although I’ll never be completely normal. There are scars but I don’t wear the cancer patient badges any more. I pass as a woman who let her hairdresser get scissor happy and that suits me just fine. It’s taken a long time and turned my whole life upside down in the process but I’m here and come hell or high water I’m not going to waste a second looking back. I’m almost incognito again. Long may that continue.

Maybe I won’t try getting toast out with a fork…

My son has introduced me to a new iPad game called “Dumb Ways To Die.” He warned that it’s both silly and addictive.  I think he’s probably right.

As someone living with the ongoing threat of cancer I’d already thought of some dumb ways to die. For example metastasis, febrile neutropenia, allergic reaction to Herceptin, complications arising during chemotherapy, congestive heart failure due to Herceptin and anthracyclines, becoming depressed enough to jump from something high up – multi-story car park, suspension bridge, cliff edge etc., failing to awaken from surgery, embolism, organ failure or haemorrhage.  There’s even development of a second kind of cancer, typically some form of leukaemia, as a result of the chemo used to treat the first… That really would be ironic. As you can see, I have quite an active imagination when it comes to facing the  challenges that cancer and its treatment make all too real.

The challenge in the Dumb Ways to Die game is to keep your characters alive. Not dissimilar to the paths you have to take when faced with a cancer diagnosis. Unlike death caused by cancer, the Dumb Ways to die folks have some novel ways of shaking off their mortal coil. Some need to avoid oncoming trains, some need to keep their aircraft flying, another needs to put mustard on a hotdog so his hungry pet rattlesnake eats that instead of biting him on the eye (ouch!) and another has to be protected from angry wasps.  It’s a very silly game and so far I’m not very good at it although I consistently manage to avoid opening the door to a psychopath.  Being attacked by piranhas is another story, especially if there are more than half a dozen.

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A psychopath was one of the few things I didn’t imagine killing me when I embarked on my tango with cancer. On reflection I was a little remiss to neglect that option because although I didn’t run into one of those I did encounter a sociopath. The experience was far from pleasant. Unfortunately sociopaths can pass themselves off as normal members of society and often end up in positions of power because they use their charm and well-developed manipulation skills to fool others into giving them what they want.  Sociopaths have no real emotions, can lie shamelessly, do not feel guilt or remorse and will do whatever it takes to achieve their aims.  They are often described as narcissistic, grandiose, charming and authoritarian.

Fortunately I’m no longer impacted by the sociopath and can concentrate on getting my life back on track once my cancer treatment is finished.  I will always have some of the original dumb ways to die in the back of my mind – I think that’s probably unavoidable once you’ve been through the cancer experience and endured treatment. However, I can cross off chemotherapy related incidents as far as I’m aware, at least in the short-term.

I will also refrain from setting my hair on fire (its only just growing back), eating anything thats out of date and will fervently avoid leveraging toast out of the toaster with a fork in future. I don’t feel the need to add those options to my already extensive list of cancer-related dumb ways to die!

 

  • Dumb Ways to Die – Protect Your Private Parts From Piranhas [iOS Review] (thegamerwithkids.com)
  • Understanding the Sociopath: Cause, Motivation, Relationships  http://www.psychologytoday.com/blog/insight-is-2020/201304/understanding-the-sociopath-cause-motivation-relationship
  • The Sociopath in the Office Next Door. http://www.forbes.com/2010/11/19/sociopath-boss-work-forbes-woman-leadership-office-evil.html

 

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.