Shatterproof

It’s just over two years since cancer darkened my doorstep, turned my world upside down and ripped away some irreplaceable parts of my life.   The body I live in is not the one I grew up with, the scars I carry aren’t restricted to my chest and my days are all a little less carefree than they used to be. Cancer is cunning so ongoing vigilance is unavoidable. Vigilance means thinking about it, checking for it, watching, listening, monitoring, observing. The last thing a cancer patient wants to do is think about cancer, the sensible thing is to remain forever aware.

Recently I returned for a follow-up mammogram, part of standard cancer patient after care. (According to NICE guidelines I should be offered an MRI – so far that hasn’t been forthcoming and doubtless it’s all down to cost). The mammogram result came through earlier this week with a letter that says “there were no signs of abnormality which is obviously reassuring news.” I struggle to get excited about it or breathe even the smallest sigh of relief because this news isn’t completely reassuring. I had a false-negative result before and a piece of paper stating no sign of abnormality could so easily have sealed my fate. Fortunately I favoured instincts over x-rays on that occasion, a decision that almost certainly added a few years to my life.

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Its only now, a while down the line, that I can look back with some clarity and say the last two years have been  physically, emotionally and psychologically tough. The profound uncertainties, constant ambiguity, twists and turns of every medical procedure all the while never quite knowing if the picture was complete and true. The disappearing acts, privation and injustices, because a broken spirit is, of course, the ideal accompaniment for a broken body and traumatised mind. The toll of treatment, the obvious and not so obvious impairments and the side-effects that are permanent not temporary. The maelstrom raging over the last couple of years might have proven all-consuming, it’s  brutality, ferocity and relentlessness shattering mind, body and spirit into a kaleidoscope of jagged shards each too small and uneven to form anything other than an unsightly mess.

I’ve learnt a good deal through this tumult of experiences. The instability, nihilism, dispossession and  separateness. The labels help paint an accurate representation of a time that rendered more chaos and confusion than any other in my life. Yet I’m here and they’re just labels. They summarise a point in time but they are not me. . .    It seems unlikely anyone could endure a period like this without being a tiny bit broken as a result, but this damage doesn’t have to be irreparable. I will always be incomplete, imperfect and scarred and in spite of those things I’ve learnt what it means to be unrelenting,  intrepid and shatterproof.

 

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The Oncologist Part Two

Kidderminster TC

 

This is where I saw the Oncologist yesterday. It’s where I spent hours (around 70 in total) rigged up to a pump receiving chemicals that come with large biohazard symbols all over them.  Getting close-up and personal with something covered in that particular symbol is great for building risk tolerance, almost akin to lighting matches at the petrol pump or playing Russian roulette.  Cancer is very much like Russian roulette – a potentially lethal game of chance – and although I know the those hazardous chemicals are designed to change the odds, seeing something marked biohazard enter a vein can never be anything other than disconcerting.

I dutifully completed my Persephone trial questionnaire reporting overall improvements in general health, no change in joint pain, continued loss of earnings compared to the pre-cancer days and relatively normal cognitive functioning, so long as I’m not tired.  My height was checked: this always makes me laugh because at my age there is no chance of further vertical growth and only a slight chance of noticeable shrinkage.  My weight was checked: this never makes me laugh because in spite of very regular exercise, healthy eating, plenty of water and a near zero alcohol diet there is still plenty of potential for horizontal growth and only a remote chance of microscopic shrinkage.  Stick thin are words that are unlikely to enter my vocabulary any time soon.

The Oncologist came out of his office to find me, which was unusual because he’s normally too busy to move. After the usual questions we proceeded to the examination which includes tapping over the liver, various prodding of the neck and chest and visual inspection.  All seems well so we proceeded to a conversation about ongoing joint issues – both knees, both ankles and right-hand fingers.  For a long time I have suspected these are all treatment related irrecoverable side-effects. Yesterday the Oncologist confirmed my diagnosis and acknowledged my underlying suspicion that any further improvement is unlikely to occur.  I had prepared for this eventuality; the joint situation is annoying, frustrating and often painful but at least it isn’t cancer. Having its permanence officially confirmed was too good an opportunity to miss so I asked the Oncologist in my most serious tone how I could possibly be expected to climb Kilimanjaro and then run a naked marathon next Spring.  This had the desired effect of making him laugh and put Sally the trials nurse into an uncontrollable fit of the giggles.

Once we all returned to cancer clinic stoicism I asked about the outstanding preventive surgery, described my family history as prolific, aka develop one get five free, and as we all die before age 50 it’s positively infuriating because none of us get to see the paltry pensions we worked like slaves not to have. It may be gallows humour but for my unfortunate predecessors  it’s also true. This made the Oncologist laugh, Sally hadn’t fully recovered from the naked marathon and two laughs in one appointment is quite an achievement. After confirming I’d given it plenty of consideration, know exactly what more surgery entails and have no fear (psychological or physical) about it, the Oncologist and Sally agreed they are both of the mind that it’s a very good idea and unlikely to fall into the over-treatment category in my case. A consultation with the oncoplastic surgeon will be arranged shortly…

All in all the visit was successful. No sign of anything untoward – check. Confirmation that treatment, not age, is responsible for various joint mayhem – check. Validation of my position on the outstanding surgery – check. Making the Oncologist laugh – check, twice 🙂 .

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.

Misguided, 10 Myths & Missing the Point

Those of us unlucky enough to be on the breast cancer merry-go-round know all too well that the Media has a strong role to play in raising awareness. It has an equally strong role in conquering a number of misguided, often serious misrepresentations of the truth.

Sadly much of the Press around breast cancer either sexualises or trivialises the disease by portraying it as an “easy” cancer from which we’ll all almost certainly be “cured” and go on to live long, healthy lives. (Myth 1).  A short detour into the land of all things pink and plastic is nothing more than a minor inconvenience for which we receive plenty of help and support (Myth 2).  Post-treatment we’re duty bound to be happy about our good fortune and can celebrate how incredibly lucky we’ve been since developing the “best” kind of cancer (Myth 3).  We’re cured (Myth 4) so can spend plenty of time flaunting freshly reconstructed, completely flawless (Myth 5) new “boobs” that are sure to be the envy of all our friends.

This quick, simple and largely painless path from diagnosis through surgery, neo-adjuvant or adjuvant treatment (Myth 6) and on into the realms of pretty-pink, happily ever after la-la land (Myth 7) is one I’m sure my friends with breast cancer all recognise and are, like me, so very pleased about. Breast cancer is a highly desirable form of cancer and of course we’d wish for it because it’s better by far than other types of cancer. We’re very “lucky” don’t you think? (Myth 8)

No. I’m sorry to disappoint but this is not a disease anyone should ever wish for.

Unfortunately the Media recently helped perpetrate another misguided appeal that misses the point about cancer by a country mile. An advertising campaign for pancreatic cancer helps further the myths that breast cancer, or prostate cancer for all the guys out there since breast cancer is an exclusively female disease (Myth 9), is a “good” kind of cancer.  It’s so good that it’s obvious we’d all chose breast, skin or prostate cancer given chance to select from the smorgasbord of available human cancers running rampage through our world. Those kinds of cancer are so much better for us should we feel the need to acquire some form of the disease (Myth 10).

Having lost a colleague and friend to pancreatic cancer several years ago I understand the stark reality of that particular form of this insidious disease. There’s nothing good about it and survival rates are low because it’s often discovered late, when locally advanced or already metastasized to other areas of the body. When diagnosed early the outlook for pancreatic cancer is often very poor and I fully agree that further research, better diagnostics and improved treatment regimes are all desperately required.

However I also have a long standing, close-up and personal relationship with breast cancer so will offer thoughts for those – including advertising companies and the Media – who might think it’s “easy,” “curable” or presents a “better choice.”  I urge you to consider the following then tell me that you’d wish to have breast cancer (or any other cancer that might be worth wishing for) if you’re given a choice:

  • You BRCA negative but you’ve lost at least five generations of women in your family to breast cancer, all before the age of 50. Each woman lived healthily pre-cancer, went through extensive and life-threatening treatment yet still developed metastasis within a few years of initial diagnosis… Will you choose to invite this disease into your life or the lives of those in your own family?
  • You never met your Grandmother, she died of breast cancer when your Mother was 5 years old. As a teenager you watch your Aunt (in her 30’s) go through surgery, radio and chemotherapy. A couple of years later she’s in palliative care, steadily succumbing to brain and bone metastases that eventually break her hip causing unimaginable pain for the last few weeks of her life… Does this sound like a better option than other forms of cancer?
  • At 23 you see your Mother endure surgery, radio and hormone therapy. She then faces surgery and chemo for secondary liver, ovarian and bowel cancer. You’re sitting at her hospital bedside, she’s encountered yet more side effects and as you talk a treatment induced blood clot drifts into her lungs. Panic ensues and you’re ushered away. Some time later, you’re unsure how long because your head’s spinning and your heart threatens to break through your ribcage, you hear the words “I’m sorry.”  In your final moments with your Mother she’s desperately gasping for breath and has time to realise something’s terribly wrong. Decades later that image, the noise and the violence of her death are indelibly etched on your psyche… Are you going to vote for breast cancer now?
  • You’re 41 have a teenage son and partner to support. You worked your socks off for over 20 years as you’re the only source of income. Despite regular screening you’re diagnosed with aggressive, invasive HER2+ breast cancer. Your life disintegrates in a matter of months, long-term friendships, your livelihood and your son’s mental health all dissolve. You undergo gruelling treatment for 18 months that causes persistent side effects and no guarantee of success. Your family knows this as well as you do…. Can you imagine finding any of this easy?
  • You begin rebuilding knowing you’re at high risk of recurrence in the next 3 years, need to make it past 5 years and even then the spectre of breast cancer can resurface with a vengeance 20+ years later. You avoid looking at your mutilated body, your confidence wanes and though your hair’s back your scars remind you that you’ll always be a cancer patient. The physical scars are ugly, the psychological scars are worse … Answer honestly, are you still going to wish for breast cancer?

I think you’re going to say no.

No sentient being wishes for hell on earth and that’s exactly what breast cancer is, creates and leaves behind.

Perceiving one form of cancer as more desirable, easier, curable or survivable is misguided. It completely misses the point because there is still no cure for cancer and that includes breast cancer.  It is not a disease to wish for under any circumstances and the sad fact is that men and women across the globe die of breast cancer every day.  As with most forms of cancer if it’s diagnosed late the prognosis is poor but even when diagnosed early (node negative), breast cancer can creep on via micro-vascular invasion taking hold in the brain, bones, liver, lungs or skin at any point.  Treatment is no less gruelling than for other forms of cancer and contrary to misguided Press stories success isn’t guaranteed. Statistics have improved thanks to increased awareness and earlier diagnosis but far too many lives are cut short, often young women in their 30’s and 40’s.  Irrespective of type, cancer is a complex illness and outcomes depend on a myriad of interdependent factors including age, genetics, chemical and environmental considerations most of which remain poorly understood. Geographical location and cultural norms also have huge implications for diagnosis and survival, something Doctors in many African and Asian countries know only too well.

It’s unlikely people like Claire, Cancer in My Thirties or The Sarcastic Boob would wish for breast cancer given any choice in the matter. My Aunt and Mother are no longer here but I’m 99.99+% certain it wouldn’t have made their wish lists either. Unsurprisingly I did not wish for it (it came anyway) and I would never wish it for anyone else. As a sentient being I know what a god-damned awful disease this is, what it does, its consequences and all the things it ruins, breaks or takes away.

Wishing for one form of cancer over another is sadly misguided, misinformed and missing the point. Happily ever after breast cancer remains a myth in too many cases so please think very carefully. A wish for breast cancer is not the same as a carefree, pain free, cancer free life. The treatments are very challenging and you may still end up with just a few months to live. The seven point truth is this:

  1. Cancer, including breast, skin and prostate, is a killer.
  2. There are significant outcome implications based on where in the world you live.
  3. Incidence rates are rising.
  4. We are all in need of a cure.
  5. Prevention must be our ultimate aim.
  6. Cancer research requires improved funding and continued support.
  7. Many more will die before cure or prevention become global norms.

Snowdrops in Fresh Pastures

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.

 

Thanks is reward enough

This week has already been busy yet its only Wednesday.  Perhaps its true that time speeds up as we get older 😉  I’m not sure how I worked full-time, studied part-time, had a family, ran a home and travelled extensively while still finding time for the odd TV programme.  Somehow I managed to squash it all in to 168 hours a week for the past 20 years… maybe that’s why I have wrinkles and white hair?!

 

I’m prone to packing as much as possible into the time available and I’ve been this way for longer than I care to remember.  The volume of activities occupying my life are largely of my own doing.  I could’ve given up studying, been less committed to my career or switched my phone off every night but I’m fairly sure I’d have found other ways to occupy my time. I’m fairly sure that my desire to live each day to the full stems from being very aware that reaching retirement isn’t something everyone gets to do.   If I’m one of those people I want to make sure I haven’t wasted too much time slobbing about when I could’ve been doing something useful.

 

My train journey on Monday was meant to be an uneventful opportunity to catch up on some reading and start researching education technologies in more depth.  As it happened the train was delayed by over 45 minutes and I gained a companion for much of the journey.  I’m not sure if it’s the fact that I’m a middle-aged woman, look unlikely to rob anyone or that I appear to know how to deal with technology that makes me seem non-threatening to elderly women travelling alone.  Whatever it is I don’t mind because I’m quite happy to sit and talk to older women as a means to pass the journey for both of us. This week was no exception.

 

An elderly lady joined me at Oxford and we spent the rest of the journey holding an impromptu lesson on how to get the best from an iPad, how to join train or other WiFi services and options for mobile connectivity.  The lady was 81 years old. She told me she was paying (a rather large sum) for weekly one-to-one lessons from Apple.  After an hour and a half on the train she said she’d gained far more from our time together and thanked me for helping her. She wanted to know how I managed to get through life this way, giving up my time to complete strangers whilst neglecting whatever I needed to do. She wanted to know how I could go through life being so kind.

 

The lady’s observations threw me a little.  I don’t find helping strangers unusual and if sharing some knowledge makes another person’s life easier then so much the better.    I would like to think that if I’m old and in need of assistance one day someone will devote a little time to help me.  I smiled at the lady and told her I come from a family where helping others is part of our DNA;  we grew up knowing kindness costs nothing yet makes a world of difference.  I helped her take her suitcase from the train, wished her a pleasant day and was about to set off to meet friends for lunch when the lady stopped me.  She said she still found it hard to see how I get through life being so kind to others and asking nothing in return. I told her it was my pleasure, no trouble at all (I was just sharing knowledge after all) and wished her well. Making her happy,  a little more technology-aware and receiving her words of thanks were reward enough for me 🙂

 

English: The logo for Apple Computer, now Appl...

 

 

 

It may linger…

Horror is a feeling that cannot last long; human nature is incapable of supporting it. Sadness, whether it be from bereavement, or disappointment, or misfortune of any kind may linger on through life.” James De Mille.

self portrait of sadness

self portrait of sadness (Photo credit: Wikipedia)

Today one of my cats, the ginger one, caught and ate something before I could rescue it.  I think it was probably a young rat.  I’m not a huge fan of rats (because there are so many of them and they are very destructive) but I prefer it if the cats don’t eat them. Cats are skilled hunters and although they’ve been domesticated over many eons their underlying instincts remain unchanged. They are hard-wired to catch and eat small creatures and my contrary wishes don’t always get taken into account.   No-one here in the countryside is unhappy that the cats hunt down a few vermin; they’re glad the rodent hordes aren’t over-running their outhouses, stables or wheat fields.   Sometimes people accuse cats of being cruel but this is a human label and is best applied to human behaviour. Cats simply rely on their instincts to ensure their survival.

Humans do not need to be cruel to one another but wherever you look you can find evidence that such behaviour runs rife through our societies. Whether it’s the school bully, the autocratic boss, the abusive partner, the over-critical parent or the warmongering militia, human cruelty can be found in so many places.  It operates at all levels, physical, emotional and psychological and whilst the horror of those situations may not last for long, the pain and sadness have the power to linger throughout life.  However it happens, when one human hurts another sadness remains long after the horror of the situation has subsided.

I remember my Mum telling me that for as long as she could remember her step-mother branded her stupid and clumsy. (She had a step-mother from the age of five or six).  Growing-up unsupported and demeaned meant my Mother had little self-confidence. She truly believed she was both of these things and thought she had little to offer the rest of society.  It was only when she met my Father and became part of his family that she realised some parents are different; some are kind, loving, compassionate and encouraging.  My Mum blossomed as a person in the company of my Father and his family, she had the most wonderful life with my Dad (who also happens to be a kind, compassionate, intelligent man who puts other people first).  In spite of this change in circumstances I know for a long time my Mum still struggled with thoughts of being unintelligent and awkward.  The saddest thing about it is that she was bright, intuitive, graceful and amiable.  For a long time she thought she was of little value but all those who knew her valued her greatly.  Her step-mother was undoubtedly a cruel woman who caused so much distress. I chose not to maintain contact with her as soon as I was old enough to make my own decisions.

Someone very dear to me is in the midst of the sadness that comes from acts of human cruelty.  Not physical mistreatment but acts of abuse none the less.  It has suffocated their joie de vivre, stolen their dreams and crushed their confidence.  I would like more than anything to remove the pain, eliminate the sadness and create a space where chi might flourish again. I fear I am not that skilled. I can splint broken bones and alleviate the symptoms of a multitude of minor ailments but I know no easy way to mend broken hearts or relieve lingering sadness from a tired soul.  My inability to recover and restore what has been lost disappoints me greatly.  Sometimes I need to work miracles and it saddens me that I cannot.