Monday, 28 November 2016

Who'd have thought that the world was like an accordion?

Back in ancient times when people thought the world was flat, mariners were ‘afeared’ to go too far lest they fall off the edge.

Technically the Earth is a globe. It’s spherical, not flat. Life doesn’t end when you walk off the edge of a disc. We all know that's true...but modern science also feels a little inaccurate to me.  I feel that life is, in fact, more like an accordion. 

I know precious little about this musical instrument other than that it functions by expansion and compression. Bellows force air across reed and valves. There are complex looking buttons and piano keys to push. A truly multi-faceted and complicated organ, much like life, they squeeze in and out, in and out, the tune and pitch controlled by a great pair of masculine hands (for I have yet to see a woman operating a squeeze box – sorry if that seems sexiest!).

So why an accordion? Evocative, for me, of folk music, of Germany and Russia, yet with the potential to play any musical genre, current or classic. 

This revelatory sentiment comes from the endless series of moments in my life where my world appears to expand and contract. Sometimes suddenly and unexpectedly. Sometimes over a long period of time, the change so slow it's almost imperceptible.

You must all have had those moments when your focus narrows. The world shrinks for a while and there is nothing beyond that matters. It might be an exam room as you stare in intense concentration at a question on a page, willing your mind to access the relevant facts, quotes, figures. It might be a moment of ecstasy. The birth of a child, the passing of a driving test, the savouring of a delicious slab of cake.

The smallest I think my world has ever become is a plastic drawer.

It was a totally non-descript Perspex sliding drawer, transparent, clinical. It had a white sticker on it with black writing saying 'FACE MASKS.' It was the last thing I remember before the emergency operation to remove the tumour from my colon.

Curled up on a gurney, instructed to curve my spine like an angry cat, arms hugging my knees like a child I waited for the anaesthetist to insert my spinal block, the final step before general oblivion and the operation beyond.

It had been less than an hour since I’d received the devastating news of my tumour and forthcoming surgery. My accordion had collapsed inwards brutally, forced shut, crushing my spirit. The bellows, now compressed, were at rest. There was no music. I'd said goodbye to Josh and now felt totally alone. I was trying not to cry. I was terribly afraid, possibly more afraid than I have been at any point in my living memory, and that drawer saved me. An innocuous drawer of surgical face masks encouraged me to keep breathing. It could have been any one of at least twenty such drawers in the room, but the ‘face mask’ one was mine.

At the other end of life’s magnificent spectrum there are the moments of hyperextension and expansion. The days where the world truly feels like your oyster. You can go anywhere, and do anything.

You can voyage from the chilly heights of Lake Titicaca in Peru and Bolivia to the swampy, stifling jungle of the Amazonian river basin in days. You can dive with manta rays in the Maldives, watch the sunrise over the red sands of the Namib desert. You can sing, joke and dance with children of every class, faith, and race in every corner of the world, knowing that money is not the key to accessing such simple pleasure and joy.

But know too that it will not always be thus. Wherever you travel and whenever life provides rich opportunities to expand your mind and your world, bottle such memories and feelings. Store them for a rainy day.

For the accordion of life plays an unpredictable tune. As rapidly as it expands, it can contract too. Folding the world inwards, squeezing life and breath from your lungs. Reducing the world to a Perspex drawer, or perhaps another inanimate object that allows you to focus the mind and block out pain.

These fluctuations are not always sudden switches from one extreme to another. I know not what tune is currently being played on my squeeze box, it is certainly not something I have chosen, nor do I recognize it’s composition. There is no clue to where it will go next. No predictability. I like to think of it as an extended lyrical piece and that recent weeks are simply part of a sad, melodic section. The accordionist delivered a sudden and surprising key change into the minor clef. But now in this minor key the music is still beautiful, if a little more melancholic. 

Beyond the surgery and cancer diagnosis my world has remained small and compressed. There was a week on the ward. Not even the full ward. My fabric cubicle of 5m x 5m. Plus the route to the shower and toilet. Maybe add another 20m if I'm being generous. It was more than enough physically and mentally. Friends and family visited from the outer world. From my window I could see the wide streets and vistas of Tooting and London beyond. But for that week I wasn't part of the wider world, I couldn't imagine it nor conceive of being part of it again.

Five days later there was a big leap taken to move from hospital ward to car, the car took me out of London, and then home to Shropshire. More space, more life, invigorating breath pulled back into the bellows. Since then another lull. I've not left Shropshire for five weeks and I've not travelled further than 20 miles from home.

Perhaps some people can willingly spend a lifetime in such a confined space. Some individuals, convicted justly or unjustly for years on end in prisons around the world, some detained without trial, have no choice. Physical travel is impossible, only mental freedom is possible. I suspect there are some in my home town for whom the bubbling brawl and sprawl of Birmingham is a step too far. A mere fifty miles geographically, but another world psychologically. Staying put can be a positive choice. It’s comfortable and familiar and easy. Right now I agree.

But for me it won't last. I have tasted the pleasures of the far reaches of the world mentally and physically. I know the joy that exploration, discovery and mental, spiritual expansion can bring. Maybe not now... but one day I look forward to dancing along to a merrier song, a jaunty and uplifting tune which brings the soul to tears with positive emotion.

As for today, I remain paused in anticipation. I feel the accordionist is preparing to pick up the squeeze box again. Fingers poised on the keys and buttons. The only tune I can imagine is that which the oncologist will set when we meet today. I can perhaps venture suggestions, but it will not be me setting the pace or pitch of this next musical section. Let’s just hope he has an ear for the major clef and an upbeat melody, I’m not sure I fancy more dissonance right now.

Wednesday, 23 November 2016

The Cancer Jigsaw

This week, the similarity between jigsaws and getting treated for cancer has really struck me.

I’ve always loved jigsaws. 

They remind of Christmas, and roaring fires, and spending hours with my family, bent over a box trying to marry up subtle tonal shades and miniscule details against a cover image of dubious quality. They strain your mind…and your eyes, especially after a glass of festive fizz.

With a jigsaw, the first thing you always do is look for the corner pieces (or so I have always been taught!). These are the firm foundations from which to build up, out, and inwards.

In my case three corner pieces came my way very suddenly and unexpectedly, it’s almost like they leapt out the box. Emergency surgery, stoma, bowel cancer diagnosis. Three of the pillars of the puzzle complete. The fourth, I’ve still not come across yet. In my head it’s finally meeting the oncologist, the individual who will complete the quadrant and allow me to start pulling everything together. The oncologist, (who I am scheduled to meet next week), is the gatekeeper to accessing treatment, scheduling chemotherapy and (hopefully) putting me on the path to recovery. I feel he (or she) is my fourth corner.

In the meantime, whilst I wait to unearth my missing corner, (desperately hoping it has not been spirited away by my daughter into a dolly’s handbag, misplaced by the NHS, or swallowed by the dog (?)) I have also started working on my edges. The edges build up from the corners, they provide structure and stability and allow you to start connecting the dots and bridging the gaps. In puzzle world they start to make everything make sense.

Next to the stoma corner there are the expert colorectal and stoma nurses, the countless books on stoma+sport, stoma+kids, stoma+sex (?!?), the long-awaited prescription support pants which most definitely have no frills and no lace (Bridget Jones here I come)…and the cherry on the cake… the assorted selection of flanges (yep, technical stoma term for the bit of the bag that sticks on your tummy). Basically lots of support to help me move from complete incompetence to conscious competence and hopefully beyond.

Just along from the corner I’m calling ‘emergency surgery’ are the registrars, the anaesthetists, the CT scans, the high dependency unit, the consultants and of course the ward staff who have helped me recover from surgery. In four weeks I have stretched out a long way from the ‘surgery’ corner. A fantastic combination of amazing surgical glue, the extended medical team, the recovery support at home, the kind words and gifts from friends and family, my meals-on-wheels team…it’s probably the area that is most sorted. In puzzle terms it’s filling out nicely. This part of the puzzle is nearly complete. Extremely satisfying.

The bowel cancer corner is interesting and complex. I like to think of it as one of those challenging segments, like one of those jigsaws where dappled light filters through trees and leaves in every shade of green and brown. Totally infuriating to solve. You think you’ve connected something, only it doesn’t quite fit. Almost…maybe with a bit of brute force and pressure? But really it doesn’t fit.

As everyone knows, the internet is a minefield best avoided, but in a quest for reliable information I’ve read clinical trial papers, NICE protocols, Macmillan guides and, most importantly, I’ve had amazing advice from unspeakably courageous and positive individuals who have already trodden the path of bowel cancer as patients, clinicians or survivors and have kindly shared their time, insights and advice. Knowledge is always a powerful weapon however you come by it. Thank you to those who have helped me with this.

With the edges shaping up I have started working inwards towards the tricky middle bit of the puzzle. This is where things get messy during the jigsaw-solving process. You end up with the occasional set of three or four matching pieces floating like little irregular islands, a bit lost on the lake of the shiny coffee-table, constantly sliding around, desperate to connect to the mainland.

So it has been with this cancer malarkey. I have some mini oases of common sense – they relate to diet and nutrition, mindset, holistic therapies like reflexology and reiki. Individually potent strands of the bigger picture, but as yet I can’t pull everything together coherently.

Getting the full picture, the solution is going to take a long time. (As indeed do puzzles in my world). My puzzles often start with all-hands-on-deck on Christmas eve, everyone keen to help and support. But interest wanes, and only the tenacious and persistent remain involved, carefully analysing those subtle nuances of shape and shade on the box and on the jigsaw.

It would be wishful thinking to assume this is one of those 24-piece ‘first puzzles’ that my toddler is now working on. That would be na├»ve. I just sincerely hope it’s not one of those 3D puzzle monstrosities with an image of smarties or baked beans that makes no sense to anyone. Or by some extraordinary manufacturing fault this jigsaw actually transpires to have a piece missing. Right now, a standard 1000 piece jobby would be just fine.

As a final thought, there appears to be a consistent message that treatment for cancer is a team approach.

Chemotherapy on its own is not the answer. No corner piece or edge piece holds all the answers. Just as a puzzle needs corners and edges, so my journey from diagnosis to treatment and beyond need strong foundations AND a holistic approach. Friends, family, expert medical advice, diet, mental health, emotional strength, reiki, writing, exercise…the list could go on and on, but the message is very clear. Tempting as it is, don’t fixate on one piece of the puzzle. However big it may loom in your mind, the other pieces are just as important. Focus on the long term goal, the bigger picture and stay positive and tenacious…and finally, hopefully the solution will be reached.

Friday, 18 November 2016

Seeing is believing. A desire to personify my cancer

As a ‘visual’ person I like to see things. Ideally I like to touch them. It makes things real to me, and the more my senses are stimulated through colour, touch, smell, taste, etc the better my understanding and memory is of any experience or fact. I suspect I’m not alone in feeling like this.

One of my issues with cancer is that is doesn’t feel real. Sensory evidence has been scarce. There were fleeting, intense abdominal pains that fateful weekend in October. I now have a laparoscopic scar and stoma bag as evidence of an operation…but what of the cancer itself?

Clearly those in the medical profession, those ‘in the club’ have seen it; I had an X-ray, CT scans, a physical tumour. There are now physical slides buried in a pathology lab somewhere, slivers of my cancer dissected and prepared for microscopic review by the experts.

Only none of this has been shared with me, other than orally, and there seems to be a reluctance to do so.

So cancer feels to me like a faceless foe. People talk of fighting, and beating cancer, but how can you fight what you cannot comprehend or see? At some point soon my fight will involve chemo; transparent, toxic and potent fluids committed to fighting for me. It is likely there will then be some physical symptoms and signs of the fight within; exhaustion, nausea, etc to name some of the milder side effects as these invisible fluids wage war on cells, healthy or otherwise, that I cannot conceive, see or comprehend. A truly bizarre scenario.

All of this ‘invisibility’ is beginning to nag at me psychologically. At some point I will perhaps get pushy and demands sight of my own results, but for now I’m trying to be likeable and to ‘play the game.’

Those suffering depression often speak of the ‘black dog.’ Sometimes it’s not a dog but another animal. Some give their animal a name, they draw it, they personify it. This is a known technique to help some people deal with and manage their depression. Another condition that you can neither touch nor see.

I have therefore decided to give my cancer its own physical face.

I haven’t quite settled on a name yet, but this creature is now (in my world) the physical embodiment of my cancer and my fight against it. Huge disclaimer. This is in fact a jellyfish hat, probably best suited to my ever-expanding fancy-dress collection. He looks nothing like a cancer cell or indeed anything medical, but I was drawn to him. In my head is it definitely a ‘him.’ (Channelling my inner feminist)

Until named (very open to suggestions here?) I’m going to call him, Grim.

Grim is not a proper name, but it’s a good description of how I feel about cancer. I don’t like having cancer, therefore I don’t like Grim. The good thing about Grim is that I can see him, I can feel him. If I want to I can shout at him, punch him, kick him across the room, throw him out the window, cry at him…and maybe, just maybe, one day I will be able to escort him to the bonfire and say goodbye to him forever. But that day exists only a shimmering mirage at the moment.

For now, Grim is going to be living in my house. Owing to the nature of toddlers and their curiousity I suspect Grim is going to go walkabouts and surprise me by appearing in random places. But that’s ok. The nature of cancer is that the emotions and awareness of this often unseen condition leap up to ambush you at unexpected moments. You think you’re doing fine, you’re functioning semi-normally, you’re distracted putting the kids coats and shoes on then ‘Wham.’ A Macmillan book on the hall table is an unwelcome reminder of my diagnosis.

So it will be with Grim. Perhaps he’ll emerge from under the kitchen table one morning at breakfast perched on my son’s head? Maybe he’ll pop up in the bathroom during my morning shower as a hand puppet? Or perhaps he’ll be brought to the front door by my faithful, present-bringing spaniel when I return from a shopping trip. For now, he’s going to be an omnipresent character in my household, the physical embodiment of my cancer.

Oddly the fact that I can see him and touch him makes me happier. Grim makes me more at peace with my cancer and the (currently) verbal-only fight which has yet to begin physically.

So I say, welcome Grim. Let the battle commence.

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