Close the door, keep walking

Close the door, keep walking

Wherever you are, whatever your situation, I wish all readers much happiness, love and wellness for everyday of 2018, these are life’s greatest riches and I hope you find them in abundance.

2017 was a difficult year for us. Although there were some high points, there were also terrors. The kind that bring sleepless nights and frantic days. We learn from all experiences, the good and the bad, but last night we pushed the door firmly closed on 2017.

The wonders and possibilities of 2018 are most welcome because the last 365 days have been a long, hard slog. Though the desire to wipe away the past is strong there are tributes to pay and deep gratitude to note before moving on:

  • For the medics who helped J survive meningitis and J’s will to recover from a very traumatic experience
  • For my father who continues to help others and spares little thought for himself
  • For our journey to the furthest reaches of Norway and our once in a lifetime experience of the Mirrie Dancers
  • For friends and family across the globe, and loved ones lost but never forgotten
  • For food, clean water, warmth and shelter – all so easily taken for granted yet still beyond reach for far too many
  • For life, however long it lasts, because every day is a day further from cancer. This year will be my sixth post-diagnosis.

This new year has barely started but it comes complete with some significant milestones for us, big events that will shape the future in ways we can’t fully imagine as yet. It also comes with lots of blank canvas, new days ready to receive whatever memories we chose to paint there. We are a family of three, and all three of us have brushed with death at an age that is far from being “old.” So as we continue this journey we remain optimistic about the possibilities that lie ahead. There is much to explore and too little time to grumble along the way. We know now that wherever the path takes us, we’ll make the most of it and keep walking on. It is, in every sense, a happy new year.

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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.

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 🙂

Stamina: the hare and the tortoise

Six days on from surgery and all is progressing as hoped. Stopped taking pain killers on Sunday and the ‘out’ drain was removed yesterday. One down, one to go. 

There’s a moment of anticipation before the drain is pulled – a split second between the Consultant’s “do we have a stich cutter” statement and the patient’s “is this going to hurt?” thought. Quite irrational given the scale of previous procedures and no, it didn’t hurt. Co-amoxiclav will continue, to guard against infections while the outside world is closely coupled with the inner world through a green plastic tube and the remaining drain bottle. 

A bit of welly (stamina) is called for when it comes to surgery and recovery. The dictionary defines stamina as: endurance, the ability of an organism to exert itself and remain active for a long period of time, as well as its ability to resist, withstand, recover from and have immunity to trauma, wounds or fatigue.

Remaining active while shaking off the effects of anaesthetic and synthetic opiates is a little difficult, especially when it’s impossible to see straight. Once all those drugs have worn off getting up and about is an important step along the pathway to healing. Sitting/lying still for too long leads to bed sores or thrombosis, neither of which is a welcome addition in an already complex situation.  A bit of walking and gentle use of the surgery-side arm helps but running a marathon or digging the vegetable patch is out of the question for at least a few weeks. Aesop’s fable of the Hare and the Tortoise may well have been written for such occasions. Slow and steady is the way to go.

The same holds true for the dressings, the wound, the scars and the newly created breast itself. Initially there are all kinds of things holding everything together – steri strips, superglue, waterproof dressings and the industrial strength sports bra worn day and night to ensure nothing moves around. Underneath that there’s the creeping/tingling/pins and needles sensation of nerve regeneration (which is odd to say the least) and the natural swelling, bruising and scarring to get used to. So the requirement for stamina isn’t just physical, a bit of emotional welly is important too. Even with an eye for the avant-garde it’s difficult to describe a swollen, bruised and slightly distorted breast as aesthetically pleasing. These things all resolve in time too, slow and steady.

I was never a good sprinter but the 10k? Well that’s another story 🙂



Stiff, Sore, Sanguine and the Six Million Dollar Man

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Not so long ago the oncologist told me the issues with my knee and ankle joints (swelling, pain, unpredictable weakness, immobility) were most likely permanent. For many people joint problems during or after Herceptin treatment aren’t an issue. I was unlucky. Unknowingly susceptible to one of the infrequent side-effects and despite a ‘treatment holiday’ at infusion six, my joints never regained their pre-Herceptin condition.

Twelve months down the line there was very little improvement so it seemed painkillers would be a regular feature and thoughts of becoming an Olympic athlete would have to be abandoned… Truth be told I never planned on being an Olympian or any other kind of athlete but after enduring an aggressive suite of cancer treatments I hadn’t planned on being fettered by my own limbs either. The thought of indefinite consumption of heavy duty painkillers rested heavily in the place between conscious awareness and mind over matter. I’ve wrestled with this issue more often than I care to admit. The oncologist advised go easy on the joints because there are no real solutions. He’s incredibly well-researched and I can’t fault the care he provided during my time in treatment.

Reluctantly I accepted ‘recovery’ as a multifarious term extending well beyond the bounds of cancer itself and somewhere in the distant past I remembered watching the ‘Six Million Dollar Man.’ I recall very little about the TV show except the opening credits. The strangest things are lodged in my childhood memories and I hear the faceless male voice saying something along the lines of “we can rebuild him, better than before…. Better, stronger, faster…”. I think $6m man was some kind of cyborg and strictly speaking I’m not so far away from that myself. As a partially synthetic pig/silicon/human hybrid I’m a long way from better, stronger or faster but I refuse to relinquish the “we can rebuild” part.

Of course rebuilding takes time and effort and is not without pain. I mind over mattered my way much further along the Tarka Trail than I intended and as expected there are consequences for such stubborn behaviour. The Tarka Trail is a traffic-free footpath and cycle track running well over 100 miles through beautiful North Devon. My journey was very modest compared to the total length of the trail but it’s the longest cycle ride I’ve been able to entertain in the last few years and I’m incredibly stiff and sore! My legs still work in a fashion and I’ve burnt more calories than I’ve eaten – two welcome benefits of the day’s excursion. More importantly my “we can rebuild” or to be more accurate, “I will rebuild myself no matter what” philosophy will, I am sure, pay off. I have no illusions about being better, faster or stronger than before – as good as I was will do just fine. Tomorrow I might find I’m completely immobile as well as stiff and sore. Yet I’m also feeling rather sanguine. I put myself to the test and nothing really awful happened. The unintended consequences of cancer treatment cannot defeat me.

It may not seem like much but that one piece of knowledge is worth far more to me than a six million dollar rebuild 🙂