Fragile

Life is fragile and to serve as a reminder someone knocked down my ten-month old kitten this morning.  I live on a quiet lane in the countryside and found Caspar in the hedge with a dislocated jaw and fractured skull.  The impact had completely dislodged his right eye so I’d say whoever hit him was travelling pretty fast. His injuries suggest he died very quickly which is the only consolation I can take from the incident.

When my neighbour’s husband developed dementia three years ago she reluctantly moved him into a care home because she was frightened he’d get knocked down. He’d lost his ability to react to passing vehicles, even slow ones, and would let himself out of the house to wander in the lanes at any time of day or night.  She said he’d always been an outdoors man and it seemed walking still held some kind of connection for him, it calmed his spirit and made him smile.  The decision to confine him in a care home twenty miles away caused my neighbour significant distress.  They’d been married for over 40 years and never before had a day apart but the fear of finding him dead or seriously injured in a hedgerow was more than she could bear.

Whenever I see my neighbour I ask how her husband is.  She tells me he is physically well but quickly fading away from her; she can barely communicate with him now. Her eyes are sad and they betray her thoughts.  Memories of happier times mixed with guilt because he’s no longer at home; the continual grief that accompanies a woman forced to watch helplessly while the man she’d called her soul-mate slips further and further from reach.  My neighbour was right to be concerned for her husband’s safety; a handful of people drive as if they’re in the Monza Grand Prix and they’d never stop in time to avoid a confused gentleman who is too unsteady to quickly step away from the single-track road. I feel desperately sad for her and for her husband even though he’ll never know it.

Caspar followed me everywhere and was especially keen on sitting in the greenhouse while I tended the plants.  You can see him in the photos below.  In the evenings Caspar and his brother Newton curled up together in the cat basket even though they were growing too big to share; one cat had to sleep on top the other.  Tonight Newton is wandering around unable to settle and staring at the back door as if his brother should be here already. The kittens were inseparable but a twist of fate means Newton has to adjust to being alone just like my neighbour is trying to adjust.  She’d give anything to have her husband back at home but can’t provide round the clock care or keep him safe from dangers he’s no longer able to recognise.

Life is so very fragile, far too fragile to take for granted.

Back in the waiting room

This week is busy. For the first time in several months I have two hospital appointments in the space of a couple of days. Yesterday’s appointment was the mammogram. Thirteen months have passed since the mammogram that couldn’t find a 2cm lump just 2mm away from breaking through my skin. Eighteen months have elapsed since the regular mammogram that gave the initial false-negative result at the beginning of 2012.  My experience means I have little faith in mammograms; I think I’m still much more likely to detect any future anomalies myself but after so much treatment I hope the eventuality never arises.

I thought I might be apprehensive about yesterday’s hospital visit but I wasn’t. Dispassionate might be a better description of my thoughts and feelings on the subject. I’ve moved beyond the pointless worrying that accompanies any form of diagnostic imaging because it’s wholly futile. Things will either be OK or they won’t. If they’re OK I continue to live a reasonably normal life. If they’re not OK I already know what happens next.  The radiographer told me she couldn’t see anything that looked to be of concern but the formal result will be with Miss M in a few weeks. Waiting is something else I’ve become accustomed to – the result will either be OK or it won’t and whatever it is, I have no power to change it.  This is the reality people who’ve been diagnosed with breast cancer live with for the rest of their lives; the carpet can be pulled from under their feet again at any point in time.  The experience has altered my perception of many things, made me much clearer about how I lead my life and where I spend my time.

Tomorrow is the final blast of herceptin, the wonder drug for people with Her2 positive cancer. Prior to herceptin disease free and overall survival rates for this kind of cancer were some of the worst; few people made it beyond the 5 year follow-up period. Herceptin is a breeze for many but that hasn’t been my experience and no-one can tell me how long the side effects will last or if they’ll completely resolve over time. The joint pain and immobility have been of greatest concern because these side effects impinge on day-to-day life. Weight gain and the inability to lose even a pound when sticking rigidly to 1200 calories a day is frustrating.  Overall though herceptin is a good thing for those whose cancers are Her2 positive, it has proven survival benefits.

3D Dual Colour Super Resolution Microscopy wit...

3D Dual Colour Super Resolution Microscopy with Her2 and Her3 in breast cells, standard dyes: Alexa 488, Alexa 568 LIMON (Photo credit: Wikipedia)

There are a few remnants of what happened last year scattered throughout my body. The scars and fakery are the most obvious as well as my shorter than pixie-cut hair which is still thinner at the front than I’d like. The early menopause that has, as far as I can tell, gone through the hormone deprivation stage and all it entails leaving few after-effects except the future potential for osteoporosis. Two toes on my right foot have subungual haematomas, one is painful the other isn’t, and all of my fingernails have onycholysis (detachment of the nail from the nail bed).  At some point I expect all the affected nails to part company with me but for now they’re hanging on.  An irritable gut that now appears to have a mind of its own irrespective of what I eat, fluid retention and inflexible joints that make me move like a 90-year-old.  Surviving cancer is not without consequences but surviving is still the preferred outcome.

After tomorrow I’ll be in the ultimate waiting room, the one that takes 5 years to get out of.  Hospital visits will be the exception rather than the norm (I hope) during that period, aside from the additional surgeries I’ve elected to have. Shortly the evidence of my skirmish with cancer will be barely noticeable, with luck my stamina and fitness will return to their pre-treatment levels and my clothes will fit again! Being back in the waiting room has no hold over me anymore.  Life is beckoning and I don’t intend to waste it on things I have little opportunity to influence.

Blue skies and new horizons

good good good

Life is filled with unexpected events, beginnings and ends, doldrums and dog days.

This summer solstice I’m able to celebrate that the doldrums have all but passed. Herceptin is almost concluded which means it’s just over a year since I discovered my body had become a serious biohazard. With luck all should be well now and I will soon return to the drug-free life I’m more familiar and altogether more comfortable with.

The densely populated dog-eat-dog hyper-drive that forms our capital city and the robotic (non)-life that streams relentlessly like human army ants on a perpetual march to who knows where is also behind me, at least for the foreseeable future.  For the first time in over twenty years dog days are here and the seeds of exciting new ventures have started to germinate.  This summer I’m not commuting, rushing from meeting to meeting or refereeing political sparring matches.  This summer I’m spending each day doing the things I want to do.

My Dad and I had lunch together last week. It’s the first time for a very long time that we’ve had the chance to do so.  Even when we lived in the same city the clockwork reality of work, work and more work stole the opportunity away from us. We have both been slaves to work for far too long because we come from a family where working hard and doing a good job is the only appropriate approach.  We both still believe in doing a good job and my Dad works exceptionally hard, but my decision to take a break is already creating possibilities that wouldn’t otherwise have existed. For me an afternoon spent with my Dad is more precious than any material possession.

Most days I get outside, work on the garden and tend to my flowers and vegetables. There are strawberries, embryonic tomatoes, courgettes and vigorous pea plants filling a space previously clogged with bindweed because in every other summer the scant periods when I wasn’t at work were rapidly consumed by a mountain of domestic activities – cleaning, cooking, ironing… and out of hours work. Now I have time to sit  under the cherry trees while adult goldfinches teach scruffy-looking fledglings to take sunflower seeds just a few feet away from me.  I have space to truly appreciate life’s wonders and miracles instead of winding my way through bureaucratic, often preposterous scenarios rife with petty politics and bereft of any commitment to achieve shared goals in service of the greater good.

Having time has given me chance to think about what I really want to do, how I’d like to contribute to society and where I want to make a difference. I’m coaching other people which is hugely rewarding; helping others achieve their dreams is one of the best ways I can think to spend my time.  I also dreamt that in future I’d work somewhere totally aligned with my beliefs and values, somewhere that makes a positive and lasting difference to people’s lives.  I sensed that I would find an environment where people strive to achieve, to continuously develop and grow irrespective of age, background, creed or colour. Now I know that once in a while such dreams come true; blue skies and new horizons beckon.

Before I take up my new job my summer will be filled with travel, friends and family.  Houses by the sea and nights so dark that the Milky Way will stretch out before me like a diamond encrusted pool of indigo-black ink. I don’t care if the days are bright or overcast; if its sunny I’ll be walking on harbour walls, stony cliff tops or sandy beaches.  If its raining I’ll be watching the waves through rain-spattered windows while drawing, painting or learning about the new technologies I’ll encounter and how my new team can harness them to create a world-class learning environment.

I’m all too aware that there are no promises in this realm, my life may still be shorter than the current average. It’s no big deal. I knew from the age of five that however long my life might be it would never be long enough to experience all the things I’d like to experience, learn all the things I’d like to learn or give all the things I’d like to give.  My new job offers the opportunity to give more, to use technology in a way that helps create future generations who are equipped to do great things, to make a positive contribution to society and the international community. For me that’s an amazing prospect – some of life’s unexpected events are changes for the better.

At the moment I’m happy to enjoy my summer days doing whatever I want when I want. I wrote about 2013 being a good year in spite of all the superstition and it looks like my prediction was correct 🙂

Don’t be dismayed at goodbyes

Life is a precious gift. Don't waste it being ...

Life is a precious gift. Don’t waste it being unhappy, dissatisfied, or anything else you can be (Photo credit: @Doug88888)

Developing cancer has changed my whole world.

Many of the changes have been outside of my control for example the results of surgery.  The outcome is inoffensive enough yet it serves as a permanent reminder that I’ve been touched by something very sinister. Every time I see myself I note the scar marking the place something truly awful lurked inside, something so horrible that it would have killed me quite soon had I not decided to act quickly.  The results of my treatment – chemotherapy and herceptin –  equally outside of my control.  Dr C cannot tell me if or how effective these rather harsh treatments have proven because every cancer patient is different. There are statistics but who amongst us fits the profile? That’s anyone’s guess.  The only thing all cancer patients have in common is that there are no guarantees. Every day post-diagnosis is something to be happy for, even when those days are marred by pain, ulcers, nose bleeds, stomach problems, fatigue, insomnia, immobility and drug induced illness.

The way other people treated me has also been outside my control. I’ve tried to remain upbeat, retain a sense of humour and  focus on what’s good in life when at times I felt (and thought) the easiest thing would be to give up, accept the misery of the situation and take the easy way out.  Taking the easy way out is not really my thing though which is just as well because some of my experiences have been nothing short of shocking.  In spite of all this, the sinister presence of cancer and people who appear to have had the compassion and common-sense equivalent of a pre-frontal lobotomy  I’m still here, I’m feeling stronger every day and best of all, I’m free.

I hope I’m cancer free but won’t get that news for another 4 years. Even then I won’t be taking it for granted because cancer isn’t that simple.   Today my sense of freedom stems entirely from the fact that I no longer have to put up with politics, inflated egos, posturing or positioning.  I’m not enslaved in an environment that’s at best noxious and at worst the complete opposite of what it thinks it is.  I’m not a burden on the state and neither am I beholden to anyone. I pay my taxes, recycle my garbage and abide by the law – I’m as free as any of us can get these days.

Achieving this new-found freedom hasn’t been easy. I’ve had to give up so many things, accept life won’t be the same again and come to terms with  heartbreaking losses that will never be recovered.   Important losses, not trivial material things that have no real meaning when all is said and done. Material things can be replaced.

Losing my friends and colleagues, at least from a work sense,  has been tough. Finally holding leaving drinks with them last week brought everything sharply into focus. I worked with some very good people and the depth of camaraderie is difficult to walk away from. I was deeply touched by the comments they made, the loss they felt and the things they saw in me that I was unable to see in myself. Last year was far from pleasant, the tail end of the year before wasn’t brilliant either (my mother-in-law died and the circumstances of her death left an indelible mark on my memory) but I was truly blessed to meet such wonderful people and spend even a tiny proportion of my life with them.

Being separated from my best friends and my family for large chunks of time while my life was a merry-go-round of medical appointments, drugs, drugs and more drugs wore away at my soul like sand erodes boulders in the desert.  My family and friends persevered even when I was limited to telephone and email instead of seeing them in person; in doing so they helped show there was something worth waiting for when I’m finally allowed beyond the boundary of hells antechamber and returned to my real life. The scary monsters ambushing me from all angles have been counteracted by the depth of relationship I have with my brilliant Dad and a small group of people who stood by me as true and dear friends.

Life has a funny way of driving kindred spirits together and for a variety of reasons last week served as a sound reminder that whatever happens those who are genuine and who genuinely care are never far away.  I’m  certain  there is no need to be dismayed at goodbyes. They’re  just a blip in the space-time continuum,  a temporary inconvenience and nothing more.  True friends endure all the moments, good and bad that go to make up a lifetime.  I will always be here for them as they are for me.  Sometimes good things come from bad experiences. There really is no point wasting your life being unhappy, dissatisfied or bored because its short, very short.  Cancer teaches you that.

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

 

Pixie dust: true friends keep making the magic happen.

frineds

There are plenty of phantom-friends, fair-weather friends and friends that are around as long as the going is good.

Good friends are around whatever the situation, whatever your status and no matter how dire things look or how sick you are.

Really good friends are like pixie dust, magical and full of surprises.

When I was first diagnosed with cancer a few people told me my illness would be the acid test, that it would enable me to distinguish fair-weather friends from true friends who’d continue to scatter their magical pixie dust for me no matter how bad things became. I never wanted to believe this was the case, I fought hard to resist the idea despite some persuasive arguments from people who’d walked the critical illness path before me and found themselves abandoned by some of their dearest friends.

I wanted to believe  everyone I held dear would prove to be a true friend irrespective of my absence and my illness but sadly I was proven wrong.

A very good and true friend helped me understand this phenomena.  She explained some people find the prospect of cancer, scary treatments and the closeness of our own mortality too difficult to deal with.   It’s not that they don’t care it’s just that they don’t know how to handle me or the thought of death so discontinuing the friendship is the only option they can see.  To paraphrase, it wasn’t me, it was them. I accept that explanation and yet I still feel sorry for the friends I’ve loved and lost over the course of the past year.

Most of us get old and when we get old we tend to get sick. I’d have liked to be old with you. Instead I’m young and sick and dealing with it because that’s the only choice I have.  Maybe one day when you’re old and face being sick you’ll understand. With luck I’ll still be around then and having done the critical illness thing thirty-odd years before you I won’t be intimidated by my own mortality (or yours). I’ll still be able-bodied enough to offer support and compassion. When all is said and done they’re the only things that matter and they can’t be bought or sold.  Good friends know this and continue to bring their pixie dust even when life looks difficult and scary. I’m fortunate to have some really good friends and I sincerely hope nothing bad ever happens to them but if it should, I’ll be by their side in a flash.

I will never be able to thank my really good friends for the love and kindness they show me. There are no words or gestures that can convey what your friendship means to me. The guy who called me today and apologised for not calling more often (you’ve kept in touch and that’s what matters), the girl friend who came to hospital with me, helped me have the most fun I’ve had in ages and made me totally forget I’m a cancer patient for a few days. That was awesome!  The couple who cried when they saw me last weekend because we’ve only been able to talk by phone since May 2012, the other girl friend who visited a couple of weeks back and took me out for lunch. The two guys I’ve known for ages who check on me regularly and are always ready to offer a hug, real or virtual along with words of wisdom. The members of my previous team who’ve kept in touch, come to visit and regularly ask how things are going.  My cousin who despite being in a different time zone always manages to maintain contact. My elderly aunt who doesn’t enjoy perfect health herself and my Dad who works the most ridiculous hours but still finds time to call me every day.  We’re all still here, we’ve all been through a lot, I’m guessing my illness may well have been scary for you too yet we’re still friends and most of us are still smiling like lunatics. (It’s the way forward I’m sure 😉 )

Thank you all for being the pixie dust that keeps the magic of life alive even in the darkest moments.  I hope with all my heart that you never go through this kind of experience but I also hope I’ll someday have the chance to bring some pixie dust into your lives too.

Some time off in London

I was away last week hence my absence from FEC-THis.  Although the FEC-T part of my treatment is over the H is still ongoing and boy is it proving to be a challenge.  There are days when I contemplate cutting off my own hands and legs just to stop them being so painful.  Fortunately common sense gets the better of me and sore as they are, my hands and legs are still useful appendages.  It’s possible the inflammation flared up again not only due to herceptin but also because I walked a lot last week and climbed numerous stairs while enjoying some time in London.

J and I went to see Muse at the Emirates Stadium.  It’s the home of Arsenal FC, a team one of my best friends supports. J said the Emirates was “too posh” to be a football stadium… personally I think all football stadiums should be like Arsenal’s 🙂  Muse were excellent, they played a selection of new songs as well as some of their older material and the show included amazing lighting, chimneys that emitted flames in time with the music for certain songs (locals have been reported as thinking the stadium was on fire!) and a floating light bulb with a trapeze artist drifting above the stage.  As I haven’t been to any events for almost two years being in such a big crowd was a little daunting at first but I soon adjusted to the environment, singing and dancing along with everyone else.  As part of J’s birthday present it turned out to be a good choice of gift because he enjoyed it and was singing Muse songs throughout the week.

As Monday was a Bank Holiday we took a boat trip on the Thames from Westminster Pier to Greenwich. I’ve never visited Greenwich before (how is it that I’m over 40 and haven’t had chance to do that until now…?) and really enjoyed it. I want to make a return visit to see the Maritime Museum and Observatory.  There are some photos from the boat trip below as well as a couple from the Muse concert.

After the boat trip we just had time to change into some smarter clothes before heading off to Mama Mia at the Novello Theatre.  When I asked J a few weeks ago what he’d like to do in London for his birthday he suggested seeing Mama Mia because “it’s the ultimate feel-good musical.”  He was right. Whether you like Abba songs or not the way they’re put together in Mama Mia along with the comedy in the storyline just makes you smile, laugh and sing…. then sing some more.  The Novello is a small but beautifully decorated theatre and although drinks were a little on the pricey side, it was a good night out. We were both singing bits of Abba mixed with bits of Muse over the days that followed… anyone listening would think we were very odd 😉

Our final event in celebration of J’s 20th birthday was a trip to Wembley to see England play the Republic of Ireland.  Although it was a cold evening, the football was lively and there was a good atmosphere in the stadium.  Our seats were close enough to the pitch to be able to see the players quite well and even though it was just a friendly match, there’s something special about watching your home country.  The result was a 1-1 draw and to me that seemed fair.  After walking to and from Wembley and encountering numerous steps my knees and ankles were pretty unhappy… but I wasn’t going to let them ruin anything.

All in all the events celebrating J’s upcoming 20th birthday were a success and I’m so glad we had this precious time together. It’s not all over yet because I have another little event planned for him tomorrow lunchtime and I finally managed to finish decorating his birthday cake this afternoon ready for the big day on Monday.  I can’t post a photo of the cake because he might see it here and that would ruin the surprise!