21 scars and all out of love for sloth

Just when I thought it was reasonably safe to put the operating theatre behind me…

2 out of 4 news scars, 21 in total

a bunch of symptoms showed up with plenty to contemplate. Upper right quadrant pain before breakfast, at random points through the day and resistant to over the counter pain-killers. An intermittent feeling of fullness beneath the ribs or a hard area towards the sternum, with pain, sometimes radiating to the right shoulder blade. After a run-in with grade 3 HER2 positive cancer, metastases couldn’t be ignored. The only way to find out was further tests. At the end of last year yet more blood tests and another ultrasound ensued. There are protocols around ultrasound and the sonographer isn’t usually at liberty to say anything but on this occasion he was more forthcoming and said the liver looked normal. I guess he knew no-one wants the thought of liver mets hanging over them like the darkest of dark clouds.

The source of the problem was identified quite quickly and completely non-invasively: a large gall stone.

Fast forward six months and there are four new scars to add to the previous seventeen littered around my torso. Although these are small in comparison to some of the cancer-related scars the after effects of gallbladder removal (laparoscopic cholecystectomy) have been more painful and recovery seems slower. Perhaps it’s because my body was already a human pin cushion and there’s only so many holes that can be made through a single belly button without repercussions? Strangely the scars in the area where the gallbladder used to be don’t hurt and the one in the midline, just below the sternum, is barely noticeable but the belly button and whole lower abdomen is another story. Maybe that’s because it’s been used before for other surgeries or maybe it’s because this surgery involved pumping carbon dioxide into the area leaving my whole abdomen distended like the alien in alien autopsy. Almost a week on and it is still out of shape.

In the recovery room where it took some time to recover (and was a little worrying at first) they showed me the offending gall stone. Just one but of sizeable proportions and certainly enough to have caused all the previous symptoms. The consultant came to visit on the ward and said “it was nasty in there.” I’m still not sure exactly what he meant and didn’t have the heart to tell him it felt pretty nasty living in here post-surgery too. It’s the one time when I’ll gladly declare opiates have been my friend.

Since parting company with the gallbladder and its unwelcome occupant all the unpleasant feelings and malaise thought to originate from there have gone away. Early days but with luck those problems are gone for good. As for the scars, they are healing well. (That purple stuff is medical super glue and it flakes off in 5-10 days.)   One of the worst things about surgery is recovery. It can’t be rushed which means being careful, nothing strenuous and giving things time. But time is precious and aside from piling on pounds when I sit around, every day spent in inactivity feels like an opportunity missed. It’s frustrating. Twenty-one scars in a 30 x 50 cm area is more than enough so hopefully this surgery is the last. Precious days are passing and I’m all out of love for sloth.

A slog more than fight

Until my mid-teens ‘fight’ meant one of three things:

  1. Squabbles between siblings – verbal, physical, but more often than not both.
  2. Altercations between kids at school, rival gangs, or the heavily inebriated having the kind of night they’d completely forget by morning.
  3. Boxing – where men knocked the stuffing out of each other for money in the name of sport. Female boxers were strongly discouraged at the time.

Since then ‘fight’ has taken on some extra meanings:

4. The role the armed forces conduct and lay down their lives for when politicians, fanatics, dictators or megalomaniacs fail to address their differences peacefully and revert to Neanderthal tactics. Clubbing one’s rivals is a proven solution tried and tested over many millennia.

5. The thing people with life-threatening or terminal illnesses are supposed to do, especially people diagnosed with cancer.

As a simple soul I’m ill equipped to explain why a proportion of humanity continue to pursue theological, political and ideological power-games that lead to more serious and deadly forms of the altercations witnessed in my childhood and teens. It must be something only despots truly understand.

I know a little more about the expectation to fight cancer than I’d ideally like and unfortunately its the kind of knowledge that once incorporated is impossible to forget. The language of cancer is frequently the language of war. People fight cancer, battle with cancer or wage a war on cancer because they are fighters, warriors, or even assassins. On some occasions  people win their cancer fight, but rarely is that completely guaranteed. On other occasions we’re told they battled bravely and courageously but sadly passed away. In real terms cancer is a win:lose scenario but whatever the situation, the language of cancer is full to the brim with fighting talk.

Perhaps societally we find it easier to deal with cancer if we say it’s something people fight. Fights can be won so when someone fights cancer there’s a chance they might win. This in turn can help make it a less frightening prospect for everyone else. School sports events conditioned us from an early age to know the winning team is always where it’s at so we rarely hear talk of people giving up, refusing the fight or waving the white flag of surrender. Giving up just isn’t the done thing, we must stay strong and keep fighting. There’s no glory in coming second, we have to win!  When people die (and lots of us will die from cancer) we hear talk of remaining courageous to the end. Perhaps this too is a means to make the truth easier to bear because someone else just lost their life to a disease we barely understand and still cannot prevent or cure.

I don’t like violence and never fully understood how anyone could fight with themselves so the language of cancer has never proven particularly helpful for me. Like it or not cancer is a bunch of our own cells that proliferate forever – cells that somehow manage to step outside the normal circle of life. Cancer is me, albeit an aberrant version. We are all different and for some people fighting analogies might be hugely helpful. For me the whole cancer thing is more of a slog.

Slog:

  1. to work hard over a long period especially doing work that is difficult or boring.
  2. to travel or move with difficulty, for example through wet, sticky soil or snow, or when you are very tired.

Dealing with cancer has taken considerable effort from me and my medical team. From diagnosis to current day I’ve been fortunate to receive nine separate surgical procedures designed to eradicate cancer, deal with the unwanted after effects of previous surgeries and do as much as possible to prevent any return of a disease with a high propensity to spring up elsewhere. In parallel chemo and monoclonal antibody therapies took place over a period of 10 months, again with the aim of preventing reoccurrence so that I might go on living my life in the quiet, peaceful way I’ve come to enjoy.

My cancer journey to date has taken four years, almost 15% of my adult life. In real terms this is very little – for some people including my own mother, aunt and grandmother it took much more.  I will always be grateful for every extra second gained through the expertise and determination of my medical team because without them my chances were slim to non-existent. Together we have now done everything possible to help me remain cancer free. Only time will tell if it’s been enough.

I haven’t been fighting for four years, I haven’t been brave or courageous and I don’t feel like a warrior. I faced a situation with few options, underwent gruelling treatment with unintended consequences and continue to rebuild my life, including everyday things like walking and working memory. I’ve been unrelenting for four years, enduring and tenacious, and I often feel tired and decrepit. I keep pushing myself hard because I want to do the things I could pre-cancer. Sitting here waiting or wishing for their return isn’t going to work.

In the time it’s taken to walk this cancer journey so far I could have walked around the Earth twice. Don’t get me wrong, I am glad to be here and largely in one piece but that’s not enough because I’m not old enough to be decrepit. When I can once again walk more than a few hundred yards without days of painful repercussions, when I can go up stairs without grasping the handrail for fear my knees will give way and when I can read a book when tired and not have to re-read it next day I’ll be completely overjoyed.

For me this cancer journey continues even though the cancer itself appears to be gone. It’s much more a slog than a fight.

Credit: CRUK

 

 

The daily prompt – Fight.

Seven words on cancer

Family:

They say blood is thicker than water and it’s easy to see why. My family trudge every step of this path with me no matter how challenging. My Dad remains a rock despite the fact that he’s encountered the journey far too many times before and with no happy ending. My Mum would’ve done likewise if cancer hadn’t robbed her of her life at such an early age. M, J and S remain positive, future-focused and encouraging. They all believe I’ll still be here in 30 years and that’s a wonderful vision to hold on to.

Medics:

These people are amazing. The surgeons, oncologists, sonographers, anaesthetists and nurses are skillful, compassionate and dedicated. Behind the scenes there’s a whole community including  histopathologists, biomedical scientists, pharmacists and nutritionists to name but a few.  They’re the driving force behind cancer care and cancer research. Many of us would not be here without them.

Invincible: 

We like to think we are and then we find we’re not. Deep down I’ve always been acutely aware of the fragility and vulnerability of all life on our beautiful blue planet, including my own. I spent 35 years attempting to ignore this until cancer provided an uninvited reality-check. So now I know I’m not invincible but I also know I’m more robust – physically, mentally and spiritually – than imagined.

Friends: 

Whatever the weather some friends will weather the  storm with you. They’ll offer to do things for you (or do things anyway because they know you’re too proud to ask), they’ll help put you back together when you’re in pieces and remind you of all the reasons you need to hold on. Other friends will abandon ship. The wife of a friend explained this to me when I was first diagnosed and I thought her judgement somewhat harsh at the time. We stand by our friends when they’re sick or dying don’t we? I owe her an apology and at the same time I give thanks to the all-weather friends who opted to stay with me.

Health:

Must never be taken for granted. Fit and in the prime of life one day, nose-to-nose with death the next, the turnaround is quite a shock. When the shock subsides a subtle awareness of the uphill journey from illness to wellness begins to dawn and the distance seems so vast. It’s also full of boulders and sinkholes.  I never loved my body but I didn’t hate it, even though it was pre-destined to let me down. As a receptacle for my soul it continues to serve it’s purpose and I’m grateful for that. But it doesn’t feel like me anymore and for however long I’m here, I’ll never be able to trust it again.

Time:

Does not last an eternity. It passes in the blink of an eye and once its gone it can’t be revisited.  Time is too precious to waste so life-changing events shouldn’t be the catalyst for this vital life-lesson. If the art of valuing time was taught in high school,  future adults might stop deluding themselves that they have all the time in the world, plenty of years ahead and are guaranteed to reach a ripe old age. Write all the time related clichés you know on a piece of paper and safely set fire to it. See how quickly it burns?

Death:

We all die. From the day we’re born it’s a one-way ticket and a completely natural part of the circle of life. Developing cancer makes death impossible to overlook and also brings the very real possibility that it will arrive much sooner than anticipated. There’s no getting away from this, no amount of worrying or soul-searching can change the shape of things to come. All I could do was find a way to live with it and in doing so savour every second of every minute of life in this very moment.

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Work, Worth & the winding road to Wellness

Alongside fear, uncertainty and the possibility of a life curtailed cancer brings many other undesirable consequences. These issues receive little media attention and this lack of publicity coupled with poor employer, government and public awareness means the implications for individuals, families and the economy at large remain hidden from view.

I know most about breast cancer so will highlight the issues through a lens I am all too familiar with. In almost all cases people diagnosed with breast cancer will require some form of surgery and surgery inevitably requires time in hospital as well as time to recover. For many cancer patients it is not a stand alone event. Even without complications people with breast cancer may find themselves facing multiple surgeries over a period of years in order to ensure the physical aspects of the disease and its aftermath are fully taken care of. As well as surgery, many patients also require additional treatments such as radiotherapy, chemotherapy, hormone or immunotherapy. These treatments can take months or years and frequently come with side effects, some of which may be permanent. Like surgery, these treatments often require regular trips to hospital for their administration or follow-up which inevitably requires some time away from work.

Cancer is an expensive business because treatments and the time taken to administer them are both are expensive. But this is only part of the story. More of us are developing cancer, more of us are developing it at a younger age and worryingly, that trend looks set to continue. Economic pressures and fragilities make it very unlikely our countries can afford the significant costs involved in providing disability benefit for hundreds of thousands of working age cancer patients who suddenly find themselves out of work. Yet despite legislation, e.g. the Equality Act in the UK or the US ADA, many working age cancer patients still find themselves facing discrimination, exclusion from the workplace and enforced redundancy. There are many good employers in the world but there are also far too many who remain ill-informed and retain outdated policies that fail to adapt to the changing face – and health – of the workforce.

This lack of awareness and inflexibility is short-sighted because it places enormous strain on the economy let alone the hardship it inflicts for individuals and their families. Research highlights that cancer survivors work at least as hard as their colleagues and take less time off for trivial illnesses when compared to other employees. In competitive employment markets where demand for skilled workers is high, finding ways to retain the services of cancer patients is therefore good for business, good for the individual and good for the economy as a whole. Although some cancer charities have attempted to provide relevant employer education and awareness, a straw poll of friends with cancer suggests there is still much to do on this front. It’s time governments and mainstream media joined forces on this issue because most cancer patients don’t want to be consigned to the dole queue or long term disability payments. It is more than an issue of income or economy, it’s also an important factor in an individual’s perception of their personal contribution and self-worth.

In many societies the way we perceive ourselves, our confidence, standing, personal and social usefulness is now intrinsically linked with our work. Our jobs, particularly when we’ve trained for them for many years or worked hard to achieve particular goals, have become part of who we are. We measure our worth not only in terms of the salary we earn but the contribution we make as employees. Cancer patients who are forced to give up work often suffer a huge sense of grief and a damaging loss of self-worth at a time when stability and security are of paramount importance. It is not the case that early stage cancer patients need less demanding jobs because they won’t be able to “keep the pace” after treatment. It is not the case that all stage 4 patients are too unwell to work, or will prefer to “spend their remaining time doing other things.”

The number of patients dealing with depression, PTSD or social anxiety as a result of enforced loss of work is significant and likely to increase as the number of working age cancer patients increases. Once again this presents a drain on local and national resources that extends well beyond the realms of individual suffering so it’s time governments and mainstream media joined forces on this issue too. Unemployment creates all kinds of social, economic and psychological problems so keeping people in work has to be a primary aim. With more lateral thinking, more flexible employer attitudes and the application of some everyday common sense, keeping people in work is rarely impossible in an age where we can connect from anywhere, converse from anywhere and complete most computer-enabled processes from anywhere. Even in more manual jobs it’s possible there are tasks employees can usefully and successfully complete with some creative thought about job design and desired outputs. We need to reach a point where pushing people out of their jobs because they have cancer is a decision of last resort.

Awareness of cancer as a critical and chronic disease has increased quite significantly in recent times but awareness of its wider implications – for individuals, families, employers, society and the economy as a whole – remains shrouded in mystery, myths and misinformation. We all have a role to play in unveiling and addressing these important issues because they aren’t going away. Without action and in a world where cancer is increasingly affecting younger people of working age these issues willcontinue to affect our children and our children’s  children if we fail to act.

 

Stocking confessions

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

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

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

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

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

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

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

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

Trapped in a Well with a Crocodile (or cancer)

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

 

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

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

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

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

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

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

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

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

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

Cast out the old year, seed something New

I lost a friend to cancer just before Christmas. She wasn’t old, lived healthily and did all the ‘right’ things but her encounter with the emperor of all maladies was shockingly brief. Just 5 months from diagnosis to death, treatment offered no respite. I attended her funeral yesterday and am still stunned. This year brought more than its fair share of rain and though I cannot afford to wish my life away – every day is a gift – I will be glad to see the end of 2015.

Cast out the old year, seed something new

2015 – A year of worry buried deep

A year of struggles, strife and grief

A year of friendship cut so brief

A year of making angels weep

The year will pass and trouble with it

The year will pass, it’s reached its limit

The year will pass, now almost through

The year will pass having taken you

2016 – New Year is edging ever near

New Year will vanquish harsh frontiers

New Year will cast aside old fears

New Year will keep your memory dear