I write when I cannot speak, Yet, now my hand and arm… Prevent me conveying the words I seek, Over zealous nerve endings, fingers curled to my palm.
My touch so sensitive, as if I’ve been burned, Pins and needles, constant tingling, I cannot grip like I feel, Crockery dropped, doors left closed, new dexterity learned, Slicing bread and chopping food taken for granted. Now a big deal.
I’ve escaped my thoughts and my fate, By keeping plenty on my plate, Always hands on, difficult to let go, Now losing my grip and feeling so low.
16th May 2020
Those of you who are early or avid readers of my blog, will know that poetry was how I started writing this. I’ve struggled to write a poem for ages and then yesterday this came from the darkness.
Read my other poems by searching or looking under the poetry category.
Like poppies, life is beautiful, fragile and fleeting, Remember you don’t have to be killed at war, To lose your life, Cancer doesn’t have to be rife, You can float through life striving for more, Rather than making the most of every chance meeting
We should be silent at 11 O’Clock Remembering those that gave us liberty, Stillness and quiet, is a dying art, Real conversations, swept away as we dart, About playing at being happy and busy, Losing your real life of simple pleasures that rock
You drew cartoon boobs when we first met, You marked me up with Sharpie, You were to the point and all set, I joked about stories for a dinner party,
Nipple callipers and sample silicon hidden in your case, Rolling back and forth between the private and NHS side, Driven by clinical need, patient outcomes and pace, Your work ethic and commitment cannot be denied.
I wish you’d had a magic wand not a scalpel, The scans seemed certain, but they lied, Meticulous precision could not conquer the way these cancer cells rule, We’re still keeping on; it’s one hell of a ride.
Months later I’m back, punch biopsy of my scar inside, Pathology confirmed what I always knew, I didn’t need the scientific view, No time for more surgery, more systematic treatment; more time to bide.
Started June 2019 when I found a tiny lump the size of a pin head in my mastectomy scar. I was reflecting on surgery.
People thought I was paranoid. They said It was scar tissue. I know my own body.
Finished in October 2019 when I returned to my original surgeon for his opinion; which confirmed mine.
You don’t have to wear pink, To be aware of breast cancer, It’s become so big, people don’t think It will happen to them.
If you do one thing today, Make sure you know how to check, I know you don’t think you have cancer in your deck. In Britain 31 women will die of breast cancer everyday.
Real sisters, mothers, daughters, aunts, wives, Lose their lives. Everyday. Why not me? And why not you? Don’t be passive, there are things you can do; Real conversations, commit to checking. Because Real lives, cancer is wrecking.
I have paused. I feel calm for a moment. The train is taking me, I am not driving it. Momentum is someone else’s
En route to do one final test, Timely hoop jumping will surely bring eligibility? The adrenalin and cortisol are slowing for a rest, They are exhausting friends of mine who fuel my agility.
Looking out across the fields, pondering the probability, Only days before the open label I will see and know, Recalling the last manic journey to only get placebo, Some feel deceived; I felt relieved, A reason for disease progression, A known price for future science to learn the lesson.
Whilst mostly strong, I’m aware of my growing fragility, The cancer has had time to take hold. I’m tired, aching and a little uncomfortable; affecting my ability, The cumulative chemo effects, I’m told.
Once again I feel like I’m in a race, Obstacles to go around, this time for the last space, When I reach the finish line, it will once again begin, New hospital, new journey, new side effects within.
I want to be hopeful, but can’t escape the reality of Triple Negative morbidity Is giving over my body and life for a bigger cause the ultimate act of humility?
Some weeks there are no words, no tears – It’s not my life, I detach to keep going. Other weeks they just keep coming – tears, tears, words and more tears I sob and howl at the likely lost years, The futileness of it all, I curl up in a warm cosy ball, I hide under the blankets – I try to block out you all, I give in to the mets’ I go to ground and hide, Sometimes I need to prorogue this ride.
Aching from deep within. My outer shell maimed, Cancer popping up here and there, treatment effects becoming evident inside, Emotional and physiological damage emerging as short term side effects subside, Honouring my body’s journey rather than the future cancer has claimed.
Internal chemical warfare, breast amputation and nuclear burning, Uncovering bad news and medical options is a skill I’m learning, Despite the collateral damage, my body’s response is worth respecting, But in order to move forward my mind needs to be accepting.
Path seemed clear for a moment; nothing is the same forever, Now hot spots and uncertainty, cloud the route to sever. More prodding, scanning, talking and results to endure, Scans for clarity bring more amiguity and no hope of a cure.
Leaving the craziness. It’s calm, warm and still, back in the nook, I’m enveloped in love. Held tight, so many emotions can let go, Breathing in deep to my soul, exhaling from down low, Wrapped in 15 years shared rollercoaster and the future cancer took,
Bodies morphed, trying not to sob, Moving from daily doing to stopping and being. Whilst accepting so much, it’s still a shock from which I’m reeling, Unknown timeline, but a future I know cancer will rob,
Still and simple. Opened up, yet held tight, Nestled in the nook. This is my safe place. Lying here, in the truth; still a break from the inevitable race, Are the scans revealing my future? Is there more blight?
Tummy gurgling, brain racing. Thoughts scrambled, running ahead, Looking back with fondness and ahead with dread, Waiting for scan results. Day packed to avoid pacing.
Going into myself, shutting down the outside, Anonymous evening classes to fill my brain with bright ideas and kick these dark thoughts out, Making room for the new where the unthinkable currently resides, Looking around this packed tube at glum faces. Grab life, smile, I silently shout.
I emerge into the sunshine, renewed and teetering on the edge of now, Get back to today. Breathe. Be. Reconnect to your senses, look outward, as much as yet another hospital department will allow, Thoughts out on this paper, time again to be smiley me.
Picking up promising words that glisten in social media, Forum posts, global medical press articles and Google scholar, Emerging treatment targets buried deep in academia, I read early clinical trials celebrating 9 months extra, with horror.
I feel relatively well; how can this be? I prepare for the worst, but hope to defy statistics. I refuse to believe this will happen to me? When is the time to be positive or pessimistic?
Meticulously searching for eligible, global, clinical trials Does my tumour have infiltrating lymphocytes and is this best? Wondering if I’m allergic to Chinese hamsters in vials, Ambiguity over different antibodies for PDL-1 status test.
Targeted treatment options limited, I’m on the very edge of science, searching for hope. Cancer cells lurking and all I want is to get rid. Researching into the night; no time to mope.
Finally feeling I have narrowed my search, I’m no scientist, but I’m driven to discover insight, Back and forth between science and my life I lurch, Being my own advocate, following the path I think is right.
Acquainted with this secondary tumour for less than a week, Meeting the Principal Investigator, whose language I only partially speak, Eligible through the reams of small print, but waiting for scans, Not spread too far, big enough to measure is the result we seek. Awaiting the results, continuing to read, making back-up plans.
Three weeks from secondary diagnosis to placebo/immunotherapy in hand, Obsessive nature; no sleep; tenacious yet polite; everyone moving at speed, Navigating changing hospitals; biopsied bits of tumour flown to distant land, Late night forums; wonderful women who’s advice I heed.
Laser focus sacrificed presence now, for longer with my children, Shutting down the outside. To go after what’s inside. Driven to search for other ways, And now I may have lots more days.