Here we go again (Poem 15)

Here we go again

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?

2nd October 2019

Back in the Nook (Poem 12)

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?

17th August 2019

Scanning my Future (Poem 11)

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. 

13th August 2019

Magpie Scientist (Poem 10)

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.

Started March 2019 finished July 2019

One of the many pages of post it notes and late night scribbles

Night time Racing (Poem 5)

Fragments come in the early hours
Subconscious thoughts surface into clear concepts;
Newfound clarity, often gone by the time I rouse
Write it down and risk consciousness, recall only excerpts

Shut thoughts and ideas down to stay asleep or return to nod,
Deep calm breathing attempts to keep them at bay
Keeping busy on the daily road is a route well trod.
Go forward, do your thing, get through until again it’s time to lay

When the yielding of the goose down returns,
The light warm weight around me, the calm of dark, the cool of the cotton
The stillness of my outer shell brings time to race, my brain learns,
Time to process and develop during daylight hours is a skill long forgotten.

30th May 2019

Running (Poem 4)

Running

I tried to outrun you. And failed.
I ran to get to the other side,
To be cured and have you in my past,
It’s not that easy; my time I must now bide.

Now I run to keep up with you.
I run to stop the feelings flooding in,
Keep moving, doing and updating my kin,
I run to simply show I’m able to.

I don’t want to miss a chance to get ahead,
Out in front, not wasting time,
Not waiting for you to get me; (to my bed),
‘Do today’, keeping busy’, is always the life I’ve led.

‘Rest up’, ‘relax’ they say,
But I want to make the best of each day.
‘Focus on chemo’, they like to write,
A priority no one wants to cite.

I used to actually run to clear my head,
Now I’m manic to fill the day instead,
To stop my head clearing to face the grief, 
Leaving everything organised and controlled gives me some relief.

I’ve been running for almost a year, 
Keeping going, keeping others going, increasing pace
It’s exhausting and relentless, but I refuse to just wait for you to appear
Passivity, self pity and reflection will not win this race.

I want to find a way to take control,
Not complacent, but proactively keeping you at bay;
Without rushing endlessly through each day.
Accommodating you, without feeling you’ve eaten into my very soul.

9th May 2019

Poetry

I would not describe myself as a poet. In fact until early March 2019 I had not written a poem since I was required to do so at school or university some 25 years before. 

And yet here we are with a small, but growing collection of poems

I wrote the first poem (Self Discovery) one Sunday whilst laying in bed, pretty low and exhausted following the delayed effects of radiotherapy. Or possibly the cumulative effects of the previous nine months: an advanced cancer diagnosis, 18 weeks chemo, several emergency hospital admissions, 3 operations, 9 weeks of carrying a surgical drain around, 3 weeks of intensive radiotherapy everyday plus a bone infusion. No clear margins and no idea how much cancer was left or where it was. 

I guess I was allowed to be tired and a bit fed up. 

Up to this point I had focused almost entirely on the physical and practical aspects of a diagnosis, i.e. running around the country going to various appointments to discuss, receive or assess the effects and success treatment. The effects were pretty significant and the success was hard to come by or pin down. In fact almost every appointment brought more bad news, more treatments and more procedures or ops. More uncertainty that is for sure.

It was on this Sunday morning that I found myself alone in bed; alone in the house and alone in my thoughts and fears. I felt that I could not talk to anybody about how I was really feeling. Up until this point I could barely allow my subconscious to think or talk about how I was feeling, even to myself. I had not really given myself much time for internal dialogue – it was just too much, too scary and frankly a distraction from the physical, practical, all consuming job of getting on top of this cancer.

To this day I don’t know why, but I felt compelled to write. 

I picked up a pen from my bedside drawer and a scrappy bit of paper (it was actually from a to do list pad – which is definitely my normal modus operandi) and I wrote a poem. It came in 60-90 mins from somewhere deep inside me. From the place that knew this cancer was not gone and this was not the end of my journey. I knew I wasn’t in remission. 

It was 3 days later on the Wednesday that I was diagnosed with secondary breast cancer. The cancer was still on the move.

Since then I have gone back and forth through various experiences on this journey and taken the time to examine how I felt and what I thought. 

I have found writing and reading the poetry an essential part of acknowledging the feelings and experiences I have lived through. A way to accept and discharge the feelings.

I hope they give you an idea of what it is like to have cancer and to endure its often barbaric treatment. I won’t pretend that they are easy reading but it is important that we share how you deal with cancer so we acknowledge its challenges for the many people who are directly or indirectly effected by this insidious disease. 

This is very much my journey and my experience. We are all unique. Each cancer is unique and how we respond to treatment is very personal. 

If someone you know or love is going through this ask them about their experience. And listen to what they say and how they say it. It will make a difference.

Poems to Date