New milestone, new mission

In a few days I’ll be 50. It’s a milestone I wasn’t sure I’d see and although it’s almost here it feels a little ethereal and bewildering. I’m one of an incredibly small number of women in my family to make it this far.

I don’t quite understand how I’m still doing OK when all our paths have been so similar. Most petered out at 40-something yet here I am, mostly intact, mostly functional, and mostly able to do the things 50, 40 or 30 year olds can do.

I’m enormously grateful for the extra time cancer care and treatment has offered me, though treatment itself was not a walk in the park. Regaining anything like my former levels of stamina, fitness and overall wellness has proven tougher still but at last this hard, hard, slog is paying off:

– 15kg lighter

– back at “healthy” BMI

– almost as strong / fit as pre-surgery

– auto-immune conditions in check

These are all such tiny things, the kind we take for granted when all is well. They may as well be miracles though because they make such a big difference to me. Time and improved quality of life are the most priceless gifts, and unexpected presents for a birthday I thought I might never achieve. Other women in my family endured extensive cancer treatment too, some even had the same chemo regime, but no-one can explain why I’m here and they’re not.

This is a mystery I’ll never solve and my time, precious as it is, will always be tinged with sadness for those who didn’t make it to the other side of cancer. They wanted, and deserved, another chance too.

It’s taken a lot of soul-searching to reluctantly accept we don’t all reach the other side of cancer treatment. This whole experience, mine and my family members, made me think very deeply about how I spend the ‘extra’ time I never quite thought I’d have. In death there is little I can do for my many loved ones lost far too young to cancer except honour their memory in the most wholehearted way possible. So it seems timely and personally meaningful that surviving cancer helped me chose a new direction in life, one where I can make a difference for others when they might need it most.

I know this won’t be easy but I’m thrilled to have been accepted to train as a nurse. I hope in time I’ll be able to give back some of the care, kindness and compassion that helped heal me enough to truly appreciate the value of life, the importance of choice and the significance of dignity in dying and death.

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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.

More Yang, Less Yin

The yin (shade, darkness) and the yang (light, sunshine) are opposite and interdependent, constantly changing, sometimes more one than the other and on occasion, one engulfed within the other.

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Mercurial, haphazard, in perpetual motion and full of contrasts: light and dark, day and night, happiness and sorrow. Our lives embody the yin-yang and for our part we must learn to adapt, knowing that bad times will eventually give way to good. As a reasonably optimistic person I live in hope that any periods of yin in my life will eventually give way to yang and on the whole that’s what happens. Living with someone who is suffering from fairly severe depression calls the whole yin-yang into question though and at present I’d appreciate a bit more yang and a lot less yin in my son’s life.

When someone develops cancer it’s immensely difficult for them and for their family and friends. As well as being a distressing sometimes frightening experience, family members often feel helpless because they believe they are unable to do anything that will change the situation for the better. Clinically this is likely to be the case but spiritually and emotionally it is not so. I know this all too well as I’ve been on both sides of the cancer fence, patient and family member. I now know the same sense of helplessness can be true when sharing your life with someone who is struggling with depression.

Watching a person you love withdraw from the world, continually question their worth and slip into thought patterns that hold no glimmer of hope or positivity is extremely challenging. Emotionally it’s very draining and this is especially so when you think you’ve turned a corner only to find yet another brick wall shrouded in darkness. That darkness is insidious and as a parent it chills my heart because I have no way of knowing how long it will continue or how much darker it might get before some daylight eventually creeps into my son’s most desperately unhappy episodes. Though he is making progress (we both thought the worst might be over) it seems minor incidents continue to throw him back into the void. Often that journey is highly traumatic and when he goes back to the darkest place we have to start again from the beginning, covering old ground and having the same conversations.

“Life is unfair,” “why do bad things happen to good people?” and “how come nasty people make other peoples lives a misery without consequences?” are regular features of our cyclical, circular communiques. It takes a significant amount of rational discussion and sound reasoning to help dissuade these views once they’ve taken root and I am not always successful. When I explain with clinical precision that fairness, bad things or nasty people are simply concepts and value judgements i.e. they are all made up, the message sometimes strikes a chord. Illustrating that life is a series of events to which we attach meaning, meanings are subjective and intangible thus fair/unfair, good/bad or nasty/nice can only ever exist in our personal view of the world occasionally comes across as off-beat or plain weird enough to provoke a degree of confusion and in doing so lets a sliver of light reach in.

I seem to serve as a constant reminder that a caterpillar sees only the end but for the butterfly life is just beginning. It takes patience, time and unwavering commitment when we’re having the same conversation for the two-hundredth time. I’m not a psychologist. I have no real idea how to help challenge the spectre of depression yet I feel compelled to do so. Something primordial whispers do whatever it takes, prevent it gaining so firm a hold that it might never let go… because deep in my own psyche lies the thought that it might not let go.

In those moments I think of the caterpillar. There is a period of complete chaos where it is nothing more than cell soup inside a paper-thin wrapper. During a few weeks metamorphosis it’s yin is transformed by the developing yang and then, almost miraculously, a butterfly breaks free. Life is once again in order and it has chosen a new and vibrant shape. No trace of the caterpillar’s doom remains to be seen.

This, I have to hope, is what lies ahead. In the meantime, patience and tenacity prevail.

Twenty-two months towards the road less travelled.

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It’s twenty-two months since I was diagnosed with aggressive HER2+ breast cancer. Since then so much has changed. How many of the changes might have happened anyway, even if I’d not been exposed to the world of the cancer patient? I know for sure the treatment related changes would all have been avoided but I’ve been exposed so there’s no escaping the fact that medically I’m a recovering cancer patient and have the scars and related issues to prove it. In three years time I aim to be classified (medically) as an ex-cancer patient, I hope the scars will fade and the side effects will subside by that point in time.

The term relapsed cancer patient is not something I aim to become familiar with so the two-fingered salute is for you epigenetic factors, oncogenes and transcription errors. Keep the hell out of my cellular processes because you are not welcome there or anywhere else for that matter. My finger nails are almost as good as before and I intend for them to stay that way. The same goes for my hair.

Whilst some of the changes of the last twenty-two months have been unavoidable, others have been a conscious and positive choice.

I enjoy meat but am now almost totally vegetarian; extensive research into the implications of cheap meat production led me to conclude the risk to my future health outweighs the fleeting pleasure that comes from a decent steak. I really don’t miss it and if I have the occasional unquenchable yearning then its a rare enough event to have no influence on my genetic make-up.

I once enjoyed wine (and beer) but again the potential risks involved in more than the minimal intake coupled with months of being alcohol-free seem to have curbed my liking for it. Even if I decide to have a glass I don’t enjoy the taste these days and alcohol is expensive so the money I save helps pay for other things.

I sleep more. Deliberately. The science of cell malfunction is complicated but we know for certain sleep deprivation leads to increased levels of cell mutation and cell mutations can lead to cancer. Gone are the days of 5 or 6 hours sleep per night. I also get out more, into the garden or walking (in spite of ongoing joint and nerve issues that serve to remind me of Taxotere and Herceptin) and I take vitamin D because most people in the Northern Hemisphere never get enough sunshine. I work hard but not endlessly, relentlessly or in the completely self-sacrificing manner of my pre-cancer life.

During the week (and at weekends if he wants company) I live with my son. We’re 40 minutes from the university – far enough to put the day’s events behind us when he returns from lectures and I return from work. Living together today doesn’t make up for the years I spent working in distant cities staying in soulless hotel rooms, but its still special and we’re at a point in our lives where we’re friends as well as mother and child. We live a quiet, harmonious existence laughing at the silly stuff and talking through any serious matters until we find a way forward. We study together, or rather he studies and I try to keep up so I can help with revision. With focus and good final exam results it looks likely he’ll realise his dream and go to medical school in 2015. I’m pleased he retained this ambition in spite of the carnage of the last two years.

My life now centres on living in the moment. I appreciate the time I have and the people I spend it with. I only fret over things I can do something about and I do something about them to negate excessive worrying. I keep no pacts with fate or destiny and I don’t assume some bright and brilliant future lies in wait for me. I accept it will be whatever it turns out to be and trust I’ll find a way to deal with it as required. In spite of everything that’s happened I don’t resent cancer; it’s just something that happened. That doesn’t mean I’d welcome it back into my life and I now know the same is true of excessive hours, an unhealthy work-life balance, sleep deprivation and regularly being away from home.

It seems some good can come from almost any situation, including those that derail the life we once knew. Twenty-two months of change has driven me to chose the road less travelled. Though there are bumps along the way, I suspect its a happier and healthier road overall.

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

A strange kind of home

I returned to the Millbrook Suite this week. It sounds almost glamorous and the uninitiated might believe it’s an opulent spa hotel somewhere balmy, exclusive and ridiculously overpriced. It’s true Millbrook welcomes an exclusive clientele and some eye-wateringly expensive activities occur there. There are few places in the world where one treatment costs between £2000 and £30,000 plus specialist staff and equipment (equally essential).

For all the things Milbrook Suite is – friendly, supportive, exclusive – it isn’t a haunt for celebrity-style pampering, the kind I’m told you find at luxury beach resorts. The staff provide an exemplary service and the treatments come in costly courses of between 6 and 12 sessions, that’s where comparisons with swanky hotels end. Fortunately service is included and visitors don’t pay, at least not directly, which is good because most of us couldn’t afford it… But what price do you put on the countless lives passing through Milbrook on their way to treating or managing cancer?

I’m one of them and on the treatment front so far so good, the £150,000+ looks like money well spent. Dr C is happy with progress, all is as it should be except joint issues that continue to perplex us both. More drugs or further investigations were briefly mentioned however I can’t recall a case of someone dying from joint pain. I told Dr C I’ll put up with it, unless he knows otherwise. He scratched his head turning his hair into a small replica of the Sagrada Familia then laughed and said he wasn’t aware that happened terribly often. So we’re avoiding further medical interventions to counteract the side effects of previous medical interventions. In my view there are always consequences.

There were 7 more lives in the waiting room this week. Some are getting better, some are forced to increase their efforts to overthrow the murderous stalker within. Millbrook Suite might be considered depressing because everyone attends knowing they have no real choice. Do nothing isn’t an option yet for some the medical staff reach a point where treatment stops working and they can offer nothing more. A man from my chemo days had lung mets confirmed; we talked about it while waiting to see Dr C. He laughed and said at least he’ll get some value from all the tax he’s paid – he thinks five years is achievable (they give him 12 months). I agreed and secretly asked whatever higher authority might be listening to please give him at least five more years because in the grand scheme of things it isn’t so much to ask. This is the reality of Millbrook. Complete strangers are thrown together and forced to confront mortality whilst accepting their bodies are no longer a safe place to reside. They laugh in the darkest moments. I’ve never quite belonged anywhere because my experience of life has been far from straightforward. It made me an anomaly and awkward or pitying questions always came up – in short, how do I cope with so few happily ever afters? I gave up asking why (the deaths and disappointments kept happening) a long time ago because there’s no other way to survive and remain sane. I find I fit in a little better at Millbrook where none of the lives are straightforward. It’s a strange place to call home and definitely wouldn’t have been my first choice but at least I’m not a curiosity there!

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.