Hopes for the New Year

berries

2016 has come and gone. There were a few health hiccups for me along the way but nothing compared to the amount of grief and suffering in the world at large.  Now 2017 is here and already people are committing atrocities, inhumane and yet so tragically human. My hopes for a peaceful new year will just have to lie dormant for another 364 days and see what 2018 brings. Something tells me it’ll be much longer before we all wake up to find our planet free from strife with every vestige of humanity behaving as truly civilised. I live in hope though, as I’m sure many others do.

Since world peace is well beyond my capabilities, my hopes for 2017 are considerably smaller and more intimate.  While many people have been enjoying the Christmas break, work, study and revision (a lot of revision) have been the order of the day for our family. So my first hope is that those of us who’ve been working get a break and those of us who’ve been revising pass our upcoming exams and settle in to our placements for the year ahead.

My next hope is that my friends and family stay happy and healthy in 2017.  Last year was something of a trial for most of us and in the end we weren’t unhappy to wish it goodbye.  None of us is equipped to deal with too much death, despair and difficulty in such a short period of time.  I know I’m still a bit worn down by it all so a less eventful year on the bad news front together with positive physical and mental wellbeing for all of you is my wish this year.

The last of my hopes for 2017 is a personal one because this year marks the 5 year anniversary of my cancer diagnosis.  If I sat down to write all the things that have happened since June 2012, the challenges, the bête noir, the unending uncertainty and the sheer weight of it all I fear I might lose touch with my sanity.  So instead it shall stay in the past where it rightly belongs and I shall hold hope that health-wise, 2017 is incredibly, remarkably and boringly uneventful for me.  Because uneventful means the likelihood of a reoccurrence, whilst never fully extinguished, is considerably diminished from June onwards.

Whatever you leave behind from 2016 and whatever you hope for from this new year, may health and happiness be your faithful companions in 2017 too.

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.

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 🌠

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 🙂

Small miracles are miracle enough

One month on from surgery and everything appears perfectly usual from the outside. In clothes it’s impossible to tell that my chest looks like the chest of a plastic doll someone once tried to saw in half. The latest scar remains red and fresh with the added benefit of some stuck-fast super-glue. Aside from that the healing process is going well. Skin knits together incredibly quickly.

I’d never heard the term ‘spitting stitches’ before this surgery so when I discovered a piece of blue synthetic filament protruding through my skin (not dissimilar to a nylon guitar string or thick fishing line) I guessed it had to be a wayward stitch. It was a few inches away from the scar which threw me at first. Then I realised the internal scar is bigger than the external scar and this piece of thread aligns perfectly with the joint between me and my newly introduced ADM pocket. Nothing to panic about.

There are all kinds of suggestions on Google as to what to do with a spitting stitch. Anything from phoning the hospital right away to pulling it out with tweezers or cutting it off as close as possible to the skin with nail scissors. I decided to keep it clean, apply a little antiseptic and leave well alone until my next consultant appointment. When I saw Miss M. she was hugely apologetic, as if it was somehow down to her rather than a failing in my thin and stretched skin.  “I’m sorry, this happens sometimes” she said, “if I can see it I’ll cut it off otherwise it will fall out on its own in time.” In a couple of minutes it was clipped short and disappeared back beneath the flesh where it will eventually dissolve. Miss M is very happy with post-surgery progress and my general level of wellness since our previous meetings. We won’t meet again until our usual annual check-up in September which means this summer will be mine to do with as I wish. The first in several years.

Strange sensations in my chest continue to confuse my brain. The pectoralis muscle starts to twitch and stretch each morning shortly before I wake. It’s completely involuntary and enough to stir me from sleep. There is no pain but its odd. Movement in my arm is almost returned to normal, no heaviness or pulling so long as I take care not to strain – no lifting or carrying heavy objects yet, no twisting, turning or driving. All those things will resume in time.

I don’t enjoy recovering from surgery, it always seems to take so long and much effort is required to rebuild lost strength after taking things ‘easy’ for several weeks.  I am happy for small miracles though – a problem-free surgery, clear histopathology and no signs of infection, implant displacement or rejection of foreign materials. I may look like some parody of a plastic doll, scars and all. I may be physically less able than I was before and my joints may never heal, but I’m well and that small miracle is miracle enough.

Celandine - the light bringer

Celandine – the light bringer

Reform, Recover, Restore

Reform, recover, restore. This is my mantra for dealing with the physical and psychological process of mastectomy.

Reform comes first – the act of taking something, changing its form and replacing it with something else, something that is similar to and different from the original.  The original brought with it a very high risk of future breast cancer, a likelihood of anywhere up to 75%. The reformed version is a reasonable reproduction – aesthetically acceptable, undetectable under clothing and more importantly, it reduces the risk of a new cancer by up to 90%. Some mental reform is necessary because a newly reconstructed breast looks and feels quite alien but sitting on a time-bomb where the tiniest change in size, shape or structure might indicate another cancer is much more disconcerting. The surgery is challenging and the scars are unsightly but I am unable to mourn the loss of something with the potential to kill me. As mantras go this reform is welcome, positive and reassuring.

Recover is next – time, discipline and patience – aka The Difficult Period. The initial effects of surgery wear off quite quickly – grogginess subsides, pain disappears, cognitive and physical energy begin to return.  A couple of weeks down the line all seems well, the sun is shining and that’s when temptation begins to creep in.  There are so many things I’d like to do, so many chores that need to be taken care of and so much I’m tempted to just get on with.  Our bodies are expert at on-the-fly repairs when given half a chance. The challenge is embracing sufficient discipline and patience to allow those repairs to take place. Resisting temptation when the overwhelming urge is to get up, get out and get on with things is difficult but right now Spring cleaning, gardening and sorting this year’s charity donations all have to wait. The recover part of the mantra is the one I have trouble with. The Difficult Period – time, discipline and patience – slows me down and leaves space for frustration to creep in.  Three more weeks and this phase will be done.

Restore is the last part of the mantra. It builds on the recover phase by addressing the frustration of ‘taking things easy.’ It’s positive and welcome because it offers the opportunity to set some goals, work to accomplish them and in doing so improve. Stamina, strength and agility can each be rediscovered, tested and refined. Help and support are welcomed and appreciated but being a burden to others and a frustration to myself are not. The restore process takes time and effort but its worth it. Eventually the list of things I’m able to do unaided will once again exceed the list of things I need help with… and that’s exactly how I’d like it to remain for the next thirty years or so.

Reform is complete, three more weeks of recover to accomplish and then I can focus intently on restore 🙂

Cicatrix

  1. a scar left by the formation of new connective tissue over a healing sore or wound.
  2. a scar on a plant indicating the former point of attachment of a part.

We all gather scars, some more visible than others.  They mark the various knocks and scrapes we encounter as we make our way from childhood to old age. The grazed knee in the playground, the cut finger in the kitchen, the gashed hand in the garage – each serves as a reminder of our calamities and mishaps.

Yesterday the dressings protecting my newest wound were removed. It isn’t pretty.  Long and red it sports uneven edges, rough scabs and is filled with medical grade superglue.  Around it lies a fair amount of swelling and bruising, some blue-black, some yellow.  Tell-tale holes at the side of my rib cage (a modern vampire bite if ever there was one) signpost the point where the drains used to be. The complexity and scale of this surgery is easy to underestimate.

Once settled and healed I’m confident the reconstruction will be a good match for it’s opposite number. That scar has now faded to a straight, flat, thin white line. Little more than six or eight centimetres from end-to-end it is reasonably unobtrusive given it’s calamitous reason for being. Like the forty year old scar from a fall in the playground or the one in my heel (from treading on broken glass at nineteen), each cicatrix has its own story to tell, a series of events that led to its appearance and some lessons learned along the way.  An up close and  personal experience of cancer isn’t something any of us wants to learn from so prevention is definitely better than treatment as Angelina Jolie will no doubt attest. Surgery is a radical option but for some of us it’s the best thing science can offer right now.

I’m not a huge fan of Picasso’s art but one of his sayings is useful when reflecting on this experience: “Others have seen what is and asked why. I have seen what could be and asked why not.”  Being covered in permanent cicatrices, deconstructed and reassembled – none of it is pretty – but cancer and the chaos it creates is much uglier.