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 🙂

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Written in the stars?

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Constellation: Leo

I confess I don’t believe in horoscopes but every now and then something comes up that might just hold a smidgen of accuracy. Today my horoscope says: “This week you are reconstructing something that was once deliberately dismantled. It will be a positive process.”

Prophylactic mastectomy could easily be classified as something being deliberately dismantled. In this case a left breast. Immediate reconstruction with ADM plus an implant is reconstruction (of said left breast removed and reconstructed on Wednesday afternoon). This week’s horoscope begins to sound quite plausible. “It will be a positive process.”  That’s such an open-ended statement. Does ‘it’ relate to the dismantling, reconstructing, both or something else entirely – there are a host of physical and psychological processes going on right now but are they positive processes?

After giving this a lot of thought the only conclusion I can draw is yes.

This surgery had the potential to resurrect so much that was difficult, painful and confusing, negative even. Being diagnosed with cancer isn’t a positive life event; my previous surgery was cancer surgery and it caused significant disruption in my life and the lives of my loved ones.  We are still recovering from some of those problems. This time around the procedure was broadly the same but the reasons are different. The next steps won’t (with luck) involve any further treatment.

I can’t change what’s written in the stars, or more precisely, in my genetic code but limiting its potential impact is another story.  Taking action is a hugely positive process. It is not without cost but what value do you place on the chance to live beyond 50 years of age, to see your child grow up, meet your grandchildren, enjoy your retirement?

Women with two or more close relatives who develop breast cancer at an early age fall into the high-risk category. Those who’ve already experienced the disease face an increased risk of another encounter. I tick both of those boxes and my first encounter was aggressive and high grade. Very recent research indicates the risk for women with long histories of familial breast cancer may be as much as 1 in 3 rather than the typical 1 in 8. I tick that box too. For people like me undergoing prophylactic surgery may reduce the risk by as much as 90%. Of course it’s important to remain vigilant because risk-reducing surgery isn’t a panacea, it doesn’t make cancer an impossibility in the same way wearing a seatbelt doesn’t make everyone survive serious car accidents.

In life there are no guarantees – never were – we just kid ourselves that we’re invincible. However the benefits of this process, of dismantling and reconstructing, aren’t just physical. For me some of the most positive aspects are psychological. No more annual mammograms that leave me fretting over the reliability of results. No more second guessing self-exams that might or might not have uncovered another anomaly. No more thinking of my own flesh as a time bomb waiting to go off (again).

For more than twenty years I lived with a question that I was never able to answer to my own satisfaction. The question: “Have I done enough to reduce my risk of cancer?”

For the first time in a long time I am able to answer fully and frankly: “Yes. There is nothing more I or anyone else can do.”

Stumbling Blocks and Stepping Stones

“The difference between a stumbling block and a stepping stone is how high you raise your foot.”

“The difference between a stumbling block and a stepping stone is how high you raise your foot.”

The risk of developing breast cancer before the age of 80 is 21.1% for those with two affected relatives. Assessing my own risk is no case for Sherlock Holmes because at least five generations of women developed and then died from metastatic breast cancer before the age of 50. Wondering ‘why me?’ when I received my own diagnosis in 2012 seemed a little pointless.  A better question was when, not if and had familial breast cancer been better understood fifteen years ago, none of this might have happened. It did and I’ve learned how to accept and deal with it.

Failing to avoid breast cancer is one thing, being thwarted by genetic stumbling blocks and uninspiring statistics is quite another. My consultants say genetic aberration is responsible for the decimation of the female branch of my family tree. On that basis the obvious answer would be BRCA but as science continues to identify, breast cancer is far more complex than BRCA1 and BRCA2. I have neither of those genes.

In time scientists will discover the fault(s) in my genetic code. With luck, skill and more time they might even establish what to do about it. Until then retaining any unnecessary quantity of natural breast tissue seems akin to playing Russian roulette.. with a powerful handgun and live rounds in all six chambers. I’m not much of a gambler and I cannot change my genes however I refuse to live in fear of the century-long shadow breast cancer casts across my family. I know the choices are limited but they’re still choices and a key piece of my cancer-defence jigsaw just came into view.

On 11th March Miss M. and I have another date in the operating theatre. The final vestige of my female (physical) self will be exchanged for silicon and pig intestine over the course of around 4 hours. I  very much hope its the last in a long line of surgeries because much as I love Miss M., I have an increasingly strong aversion to hospitals. Genes permitting this will be an uneventful risk-reducing mastectomy followed by immediate reconstruction – no need to mess around with nodes, skin or chest wall.

It would be easy to regard more surgery, the recovery period, the possibility of complications and/or unwelcome discoveries as new major stumbling blocks obscuring my route to sustained wellness. I prefer to see it as a well considered life choice in circumstances that might otherwise favour cancer, not me. Deciding to have more surgery isn’t easy, it brings back memories that I hope in time to forget but right now, this is an important stepping stone.

Once the operation is over I move from living with an unacceptably high risk of developing another new breast cancer to living in the knowledge that I’ll have done everything possible to contain that risk. In doing so I improve my chances of staying cancer free. Even the tiniest of improvements is better than none at all.

This little piggie

I am part pig.

When I was diagnosed with cancer and opted (fortuitously) for mastectomy with reconstruction instead of wire-guided lumpectomy my consultant used adermal cellular matrix (ADM) to make a pocket for the silicon implant. ADM is specially prepared pig intestine and in the UK it’s expensive, so much so that the Chief Executive of the healthcare trust had to approve my consultant’s plea, prise open the NHS coffers and sign a purchase order for another few thousand pounds worth of cancer treatment on top of some equally expensive Herceptin.

I feel hugely grateful that my consultant went above and beyond to get the right materials for reconstruction, and that she’s so skilled and up to date with plastic/microsurgery techniques. She is truly amazing in all senses of the word. At another level I remain somewhat conflicted because an intelligent and sensitive creature gave up its life so that mine might one day return to something approximating normal. That creature – a specially bred pig – didn’t get the ‘tick here to opt out’ box and as a result part of it is now very much a part of me.

On Monday I returned for my annual follow-up and “what next” discussion. Cosmetically there is plenty of tidying up that could be done but I’m not bothered about aesthetics. For me what next has always been removal of the other, “good,” breast before it starts wreaking a trail of destruction through my life. I know too many women whose “good” breast went “bad” after being assured contralateral breast cancer is very unusual. It’s nowhere near as unusual as they or I would wish. For my consultant the original priority was to get rid of the active cancer and start systemic treatment. High grade HER2+ tumours have a propensity to spread and on balance I conceded that dealing with active cancer was our joint priority; we’d return to other potential sources of untimely death later on, when my life wasn’t so readily at stake.

Later on happened to be Monday when we went back through the roll call of women in my family who’ve died of breast cancer at 50 or younger. The list is depressing, more cataclysmic disaster than family tree and although I’m now well versed in talking about it from an emotionally safe distance it retains an ability to trigger unwelcome thoughts and pitiful images. Things I’d rather not recall.

Multiple generations – 8 or more women – wiped out by breast cancer leaves the current generation (me) increasingly convinced that highly predictable trends seldom stem from random coincidence. I am and always have been in a very high risk group. Two decades attempting to convince various GP’s something is amiss in my version of the human genome and finally my consultant declared point blank that she too is absolutely convinced. Coincidences on this scale are not coincidental – her words, not mine. Whilst she’s optimistic science will unravel the faults in my DNA within the next 5 years she’s mindful that 5 years waiting for another high risk (highly predictable?) cancer event to materialise is unacceptable. We’ll be going to theatre again, the fourth time together, just as soon as a slot for surgery comes up. We’ll also be calling on another of our porcine friends so silicon implant no. 2 has a suitable pocket to rest in.

Once this surgery is complete I’ll definitely be ‘this little piggie,’ more pig and plastic than human female. The thought is both comforting and disconcerting.

I stand facing another major surgery which is not without consequences. There’s a chance untoward change is already happening in there (we have to cross that particular bridge if we come to it). There’s a chance things might go wrong – infection, haemorrhaging, skin death. Even if all goes well the surgery doesn’t come with an ‘opt out of breast cancer forever’ guarantee, it reduces risk, not the same as removing risk entirely. Ideally no other animal would have to lay down its life for me but it seems that’s an unavoidable part of this cancer dance too. I guess one way or another the unlucky pig would’ve ended up consumed by humans. At least this way it won’t be turned into sausages…

Paradox

Paradox: a person or thing that combines seemingly contradictory properties.

Cancer has introduced a universe of paradoxes into my life. One of the most perplexing is the exercise vs. rest paradox. We are told that exercise is important, one of the few potentially preventive measures we can take to help avoid a reoccurrence. We are also told that it’s important to give the body time to recover because surgery and associated therapies take a hefty toll.

My surgeon was unwilling to do any further work last year because I’d already exceeded my quota of anaesthetics and treatments. I thought I was recovering reasonably well and had no qualms about more major surgery. She strongly advised against it so we agreed to pick up where we left off when we meet each other again later this year.  Last September I had yet to discover that chemo ages the blood by up to 15 years in a process that may well be irreversible. I anticipate this falls into the ‘unintended consequences’ category of chemo-related side-effects but it means my blood is now old enough to qualify for state pension! The rest of me falls some way short and will do for over two decades. Aged blood can, apparently, be problematic. The same is true of untreated cancer.

In spite of geriatric blood, the risks associated with more surgery and the unavoidable recovery period that accompanies it, my mind is made up. NHS permitting, the remaining work will be completed before the end of this year. I fully expect the chief executive of the health care trust to have to approve provision of more acellular dermal matrix even though he knows nothing about its essential role or my surgeon’s requirements. The approval is another bean counting exercise; a few inches of ACD significantly increases the cost of a surgery that is already well in excess of £5k. Cost vs. care – another cancer paradox.

The time between now and my date with a(nother) hospital stay offers an opportunity to build some fortifications. Being fit for surgery means being well prepared physically and mentally. I’ve noticed little attention seems to be paid to state of mind; often the focus is on physical attributes like BMI and blood pressure. These are important but I think it’s remiss to neglect the mind because it can affect the body, especially pain and recovery, and vice versa.

There’s no doubt that I get more physically and mentally tired these days than I ever did before the cancer chaos. What else can I expect when my blood is over 60 and still perniciously anaemic? There’s also no doubt the stubborn streak that saw me through treatment remains stubborn enough to make me finish important tasks at home and at work even if I’d rather collapse in a heap on the floor.

I am, however, better equipped to  listen to my body and to the frazzled walnut that rattles around inside my skull serving as a rudimentary brain. Pace is everything and that doesn’t mean doing everything like a sprinter! I was never good at short distance races even as a teenager so my chances of improving that now look very remote. Endurance was a better option so while I’m working to improve BMI, physical stamina and agility I’m also using the time to recharge mentally and emotionally.

I’m fairly resilient however I know returning to hospital for elective surgery will bring back memories I’d rather not dwell on. The corridors, smells and various sharp instruments act like the black and yellow stripes on an angry wasp. Instinctively I’d prefer to be nowhere near it and no matter how well prepared, I’ll never relish the thought of more surgical drains. All of these things are inevitable in order to do as much as I can to reduce the likelihood of another episode of unwelcome cancer. Needs must.

So I’m back walking the coast path photographing flora along the way as a means to create another reality, one that holds the strength, silence and serenity to carry me through what lies ahead. That’s going to be yet another paradox.

Been there, done it, will have the scars to prove it.

Yesterday was a long day. Out of the house at 6.50am, returning at almost 10.00pm.

The good news is that surgery went well and I’ve exchanged a pair of ovaries and Fallopian tubes for a bloated abdomen and four wound dressings. I’m tempted to draw lines between the dressings forming an X. At the intersection a small sign reading “No probe zone… NHS beat you to it” could be tattooed as a means to deter any passing aliens who might decide to abduct me and commence experimentation. I have news for aliens with those kinds of ideas. I already participated in clinical trials and research programmes so if high-quality abductee material is what you’re after you won’t find it here. (You’re also all out of luck with sex and human-alien hybridisation programmes).

Despite many attempts to be helpful when it comes to veins, drips, cannulas and the like – I live in here, I know this body – the anaesthetist was sure he’d raise a good vein at the base of my left thumb. Hah! They all got burned with chemo. He did manage to insert the cannula in a reasonably painless manner, then the vein immediately collapsed. My pre-op notes say ‘POOR VENOUS ACCESS LEFT SIDE.’  As “I tried to save you wasted effort” went through my mind, Mr Sleepy said “let’s try the other side, get you to sleep and sort the rest out later.” A few minutes later I was, thankfully, asleep.

A couple of hours later I came round in the theatre antechamber. Someone was tugging at my foot while Mr C the surgeon smiled and said “good job.” I hadn’t really come round at that point but soon realised my friend the anaesthetist had made at least two more attempts at veins on the underside of my left wrist and half way up my left arm. Those had obviously – unsurprisingly – failed and were covered in surgical tape and teal-green swab material. It’s exactly the shade I had in mind for new curtains but I’m reconsidering my options having seen it firmly taped to various bits of me. It’s a shame because I like the colour but constant reminders of another trip to theatre might prove just a little off-putting.

By around 1pm I discovered the tugging at my left foot was someone changing a saline drip. It came to light when recovery nurse S looked at me in a very puzzled way and said “where on earth have they connected that?!” Beneath four layers of cellular blankets (anaesthetic makes me shiver uncontrollably for the first hour after surgery) she uncovered the truth… The chemo-scarred veins in my left arm had beaten Mr Sleepy who had resorted to a dorsal digital vein. Is nowhere to spared I wonder?

All was going well with recovery until my blood pressure dropped to 86 over 44. Nurse S decided to lay me out flat and tilt the bed backwards at a 30 degree angle. I spent the next two hours in semi-headstand position wishing I could have something to eat and drink. By that point it had been around 24 hours since my last meal and 14 since my last sip of water but health and safety law says patients cannot be fed/watered if lying upside-down. Damned Eurocrats. When the blood pressure stubbornly resisted any reading above 94/60 they took the cuff off, turned me right-way-up and decided a cup of tea and some biscuits might prove more helpful. From my point of view it was certainly more enjoyable than dangling head-down while the machine went ‘beep.’ Being in hospital is the only time I eat biscuits these days.

There was a danger I might have to stay overnight and although the rooms at KTC are very nice they aren’t nice enough to make me stay when another option is available. I came home with more  cocodamol and some extra wound dressings.

Today the wounds are sore and I feel like someone used my stomach as a punchbag but I’ve only had two cocodomol so it’s not that bad. Reading around it seems this surgery can make a tangible difference. “In high-risk women (that’s me) and mutation carriers, cohort studies of risk-reducing surgeries (mastectomy and salpingo-oophorectomy) showed substantially reduced risks for breast or ovarian cancer, with breast cancer reduced by 85% to 100% with mastectomy and by 37% to 100% with oophorectomy, and ovarian cancer reduced by 69% to 100% with oophorectomy or salpingo-oophorectomy” – Cancer Research UK. Meanwhile the current challenge, aside from recovery, is to keep off cocodamol. Being restless and irritable doesn’t suit me.

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