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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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.

Scar Tissue, Tattoos and “Are we there yet?”

“Are we there yet?” The question anyone making a long journey with a small child is sure to have heard. You don’t expect to hear it asked in many other situations but breast cancer is one where the thought occurs even if the words remain unspoken.  Pre-diagnosis I heard many media stories about how we no longer need to be afraid of  breast cancer, how treatable it’s become and how many more women survive these days. Bearing in mind none of the women in my family have survived I try to look on the bright side and hope these stories are all correct. I’d heard that treatments had moved on, surgery was less debilitating and with the help of pink ribbons the world was now full of courageous cancer warriors – previvors, survivors and thrivers.

Until I was faced with aggressive breast cancer, a type that brings a high propensity to metastasise, I had  not heard that diagnosis, surgery and treatment may well take over a year. I had not heard that diagnosis itself requires multiple steps which can (and did) include many false starts, lots of potentially conflicting information and significant additional stress. Post diagnosis I had not heard that surgery and surgical revisions, follow-up treatments and regular check-ups can extend for a minimum of half a decade – and that’s if you happen to fall into the ‘best case’ scenario.  Nor had I heard via any popular media sources that in the case of those  diagnosed at Stage 4 (or the 30% of us who go on to develop mets in spite of treatment), the journey is never complete. Check-ups, treatments and various surgeries just keep going until we ourselves come to an end. “Are we there yet?” takes on a whole new meaning in this realm.

My own breast cancer journey has been tracking along for over three years now. We are still moving forward yet still unable to answer the “are we there yet?”  question.  Major surgery is complete and I am in remission as far as we know but only time will tell if that will remain the case. Meanwhile there are a number of minor things to tackle including surgical re-work to address unintended consequences arising since the original reconstructions.  When these revisions happen depends on waiting lists, beds and Government spending reviews but in the meantime there are highly recommended ‘finishing touches’ designed to help me believe that life is as it should be.  This involves the creation of an illusion of a more normal appearance, but in truth there is nothing normal about any of this.

It is at this point that the scars and tattoos become relevant. Post-surgery, chemo and Herceptin I am the owner of a Barbie-esque chest that is almost as unnatural, shiny and pink as Barbie herself. Were it not for the scars running across the front of mine (and the vampire bites – double drain scars that adorn either side of my rib cage) my torso might be that of a plastic toy. Fortunately the vampire bites are not obvious and there’s little to be done with them in any case. The same is not true for the front facing scars and on top of all this (no pun intended) is the small issue of absent areola/nipple complexes. You won’t be surprised to learn that this tends to give the game away.

At first I didn’t think the whole Barbie/nipple thing bothered me. I was glad to be alive and still am – glad and alive. I didn’t plan to show my chest to anyone other than the person I married so missing in action areolas and nipples felt like no big deal.  But having lived with pink plastic mounds for three years I’ve come to realise the absence of those oh so common breast adornments and the obvious scars that took their place serve only to remind me of things I’d rather not dwell on.  Additionally there’s the small issue of any activity involving communal changing rooms, taking one’s top off or the dreaded but inevitable accidental reveal. Being an outdoor type that’s easier to achieve than you might at first imagine.

So after much deliberation I took my consultant’s advice and engaged in the process of additional fakery – to help disguise the fact that both breasts are completely fake.  A fake to hide a fake is pretty clever stuff but in real terms it consists of multi-pigmented tattoos designed to give the appearance of an areola/nipple complex. There is no need for more surgery to reconstruct fake nipples and as they’ll never be or behave like the originals I couldn’t see that they serve any purpose other than being there.

As with all things breast cancer the tattooing procedure is a multi-stage process and requires more than one treatment. Before commencing work the nurse tattooist gave me some anaesthetic cream. This has to go on an hour in advance in the hope it will numb the area.  On reflection I should have realised it wouldn’t be terribly effective because the same stuff is used by my dentist and never works. I normally end up with multiple doses and have to wait much longer than normal before it kicks in. So the tattoo process was not pain free and although it was reasonably quick it had me wincing and silently chanting ‘I hope this is worth it.’  The nurse did offer to stop but when you’re a third the way through that doesn’t seem like a viable option!

At the end of the process there was some blood. This was followed by more bleeding and weeping afterwards.  It’s fair to say that the area was quite sore for a few days and a little tight and swollen.  Scabs formed then became itchy and began to fall off. I left them alone because picking would cause pigment loss and possibly lead to an infection.  About a week out from the tattooing process the scabs were all gone and the resulting pigmentation is reasonable if patchy in places. This is why the procedure requires more than one attempt.

Looking closely at the scar tissue it seems the pigment struggled to take in the sharp edges of both scar lines. Incidentally this area was hyper-sensitive when the tattooing took place.  Peering less closely and looking from a small distance the scars themselves are much less noticeable and hidden by something that passes as an areola/nipple complex.  Although this is the first attempt it’s probably good enough to fool anyone who might catch a glimpse in a communal changing room – as long as they don’t stare!

The next tattooing episode will happen in about 6 weeks time when the skin is properly healed and the big question is… Is it worth it?  On balance I think it is. After breast cancer nothing is ever the same so something approximating normal is about as good as it gets.  I now know what to expect during the next round of inking and will slap the anaesthetic on well in advance. Once the soreness and scabbing subside I can look forward to having two very respectable forgeries in place of the torso of a badly treated Barbie doll.

I had to think about this long and hard because I am tired of hospital visits, surgeries, re-work, worry, stigma and prejudice. But my consult (who is a miracle worker as well as a thoroughly lovely lady) was right. Looking more normal is helping me feel more normal and that is the ultimate placebo effect.  If you’ve had surgery and are thinking about areola/nipple complex tattoos the following articles may be useful. Nancy’s post gave me the inspiration to try this for myself and like Nancy I am happy with the result

Tabula rasa

Several years ago M and I agreed that assuming you reach it, a time comes when having more stuff – trinkets, baubles and chattels – is unnecessary. That time happened to coincide with my cancer diagnosis. The maelstrom that followed only served to reinforce our thinking and of all the stuff we had, time and health were by far the most precious. Unfortunately they both seemed to exist in a separate realm, one that was well beyond our immediate influence or direct control. When presented with significant and life-threatening challenges time is suddenly measured in moments not years and moments can seem extraordinarily brief.

Peace for the restless soul - Lulworth Cove

Peace for the relentless soul – Lulworth Cove

On Saturday it was M’s birthday and rather than look for useful yet useless material goods I opted to create moments – experiences that will endure time even if one or the other of us doesn’t. It’s a fact of life that neither of us will last forever but our memoires might if we write them down, record them in photographs or share them in stories for future generations.  With that in mind and as a surprise birthday getaway I arranged for us to spend a few days in Dorset. M was duly surprised and pleased. He enjoyed the location, the warm weather, the food, the wine and the great outdoors. Our brief sojourn presented a welcome escape for me too following months of non-stop activity thanks to a continual stream of increasingly paradoxical issues at work. Good fortune smiled on me and what started as a means to create enjoyable memories for M on his birthday also became three days of peace for this somewhat wearied yet relentless soul.

The last time we visited Dorset I’d just finished treatment, a whole twelve months of it. I could barely walk and found myself exhausted every hundred yards or so on flat ground. Climbing stairs was virtually out of the question. As a shadow of my pre-treatment self I remember my inability starkly and cheerlessly. I also remember how very glad I was to be alive. To prove it I pushed my battered body to its limits. On reflection I afforded little allowance for the gruelling assault my physical self had recently endured because treatment was over and I wanted to be me again. Submitting to a range of rare yet debilitating long-term side effects was not the outcome I  intended.  This refusal to accept my suggested limitations may go some way to explain why M remembers our visit but doesn’t recall any trace of my incapacity, frailty or complete absence of stamina. I also had very little hair at the time yet it transpires M remembers nothing of the seven months I spent as a translucent Gollum-like creature, entirely bald, without eyebrows, eye lashes and missing assorted toe nails. For him it seems the year between my diagnosis and final Herceptin treatment is something of a tabula rasa. All the details have been erased. The same is not true for me. I recall details of treatments and appointments, waiting for results and wondering what next…

Aside from regular follow-ups that time is now past and though I rarely wish my time away I am glad to be the other side of diagnosis and all that it entails. Damaged joints remain damaged but they are manageable and largely compliant with the wishes of their owner. Stamina continues to grow and Herceptin weight-gain continues to resolve thought that is taking much more time, effort and discipline than I’d ideally hoped.  Moment by moment life returns to near normal, so much so that it overshadows the prospect of an unexpectedly swift demise. The slate is never entirely blank, every cancer patient knows that, but it is clean enough to support the odd daydream and make little plans for the future. In a world where miracles are increasingly rare that is miracle enough for me 🌠

Sentience

Like one, that on a lonesome road
Doth walk in fear and dread,
And having once turned round walks on,
And turns no more his head;
Because he knows, a frightful fiend
Doth close behind him tread.

    

Samuel Taylor Coleridge – The Rime of the Ancient Mariner

Sailing Away

Sentience is a blessing and a curse. Some days are more cursed than others.

I didn’t watch The ‘C’ Word. I followed Lisa’s Blog but didn’t have the necessary psychological flood defences in place to watch her story played out on television. A dramatisation and by all accounts a very good one, it might be better categorised as reality TV. It reflects the harsh reality of breast cancer where life no longer comes with a happily ever after guarantee. Some people with breast cancer do not survive. Some people with breast cancer die. Some of them are very young.

Survival has been playing on my mind a lot lately because there is no rhyme or reason to it. No-one knows who among us will outpace the frightful fiend, who might be forced to endure it to the bitter end or who might find themselves facing it on more than one occasion.  This is ambiguity on anabolic steroids and uncertainty reigns supreme. In this version of reality sentience is more curse than blessing. Lately it seems for every survival story there are multiple stories of an all too early demise.

As humans with a limited time on earth we must learn a crucial lesson – never take anything for granted. Health, strength, life itself, these things can all be taken from us in the blink of an eye.  Most people don’t need to think about mortality on a daily basis and that’s probably a good thing because life would be very depressing if we did. Those of us who do think about it – a thought pattern that is almost inevitable after a life-threatening illness – probably do ourselves no favours. Worrying about our own mortality doesn’t change the final outcome. This is another scenario where sentience proves to be more of a curse than a blessing.

So what of the blessings? Feeling the sun on our skin, watching grass grow, celebrating another birthday, anniversary, Diwali or Christmas are all blessings. Walking in the park, riding a bike, reading a book, those things are blessings too because life after cancer is difficult. It throws up questions for which there are no answers and searching for answers offers no reprieve. The simple act of waking up each day is a blessing in this reality, when you have no idea how many days are yet to come.

Time to smell the flowers

I saw a dear friend for lunch recently. We’ve known each other for approaching twenty years – almost half of my life and almost a third of his.  We first met at work, at the beginning of the dotcom boom when internet technologies and the World Wide Web were becoming commercially interesting. We have many shared experiences from our time spent working together: the excitement of launching a new business, the mental challenge of creating something innovative yet industrially and technically unproven, deep camaraderie from working ridiculously hard to meet seemingly impossible deadlines because the launch date had been announced, a core of shared values, ethics and humour.

Its ten years since we last worked together but meeting up is as enjoyable as working together and it doesn’t bring the constant need to deliver projects, manage incidents or sort out security issues. We’d both be rich if we had a £ for every one of those scenarios we’ve managed. Now we get to talk about IT things instead of doing them while grabbing (or missing) lunch. Now we get to talk about holidays, health, children and grandchildren as well as news of friends and family. There is, I suspect, more balance in our lives today than when we worked in a frenetic start-up.

Neither of us is a person who does things by halves and neither of us will go to our graves having lived only a sedate half-life. My friend is at a point where work gets in the way of all the things he wants to do outside work. He’ll retire soon but in no way will he be retired. At some stage I hope to join him in that active, days full of adventure kind of retirement.  There have been points in both our lives where life was edged out because our careers required significant energy and we aren’t the kind of people who shirk. Do all things well or die trying could be our motto.

To be in the present and live every day as if it were my last means achieving a healthier balance. I learned the hard way. We all need time to smell the flowers, to do more than simply plant them in a rush, throw on some water and hope they grow. Over lunch we talked about my recent surgery, the benefits and consequences and that I’ve now done all I can to limit the risk of another run-in with cancer. My friend said it must feel good to have this final surgery behind me, to be able to get on with life. It does. Not that cancer was going to call a halt to everything but it certainly got in the way for a while. No-one wants to dwell on it but once you’ve been down this road you can never be certain you and the big C are through. Taking time to smell the flowers, to savour their beauty and delicious scent, holds far more importance than one might otherwise think.

Hunter S. Thompson once said “Life should not be a journey to the grave with the intention of arriving safely in a pretty and well-preserved body, but rather to skid in broadside in a cloud of smoke, thoroughly used up, totally worn out and loudly proclaiming Wow! What a Ride!”  I have no way to arrive at my grave pretty and well-preserved (cancer took care of that) and in any case skidding in broadside and totally wrecked sounds much more fun.

I guess I’ll never stop planting the flowers but these days I take a moment to smell them too 🙂