Isn’t it all a distraction until we die?

I have been distracting myself quite nicely this week by filling my time with productive ‘busy-ness’. I often do this when I don’t want to think about big things. It drives my husband crazy.  Watching telly and reading books are tricky as my mind wanders easily and there also seems to be someone dying of cancer or being diagnosed with it on every channel or page.  I guess that’s representative as 1 in 2 of us will get cancer and 1 in 7 women will be diagnosed with breast cancer.  It’s still annoying when you are trying to get away from cancer for a bit.

I can’t wait for next month and breast cancer awareness! It’s always annoyed me even before I had breast cancer – all those pink ribbons and decorated bras. Granted the awareness job cannot be denied – 5,000 people will be diagnosed next month. However, that pale pink ribbon seems a bit pathetic when it’s the second most common cause of cancer death in UK women.  That accounts for about 11,500 deaths a year.  So roughly 31 women died of breast cancer yesterday, today, tomorrow and the next day. 

When you spend time with women or being a woman on chemo for life, fighting the spread of breast cancer, dealing with lymphoedema, mastectomy nerve damage, one or no boobs, skin mets bursting out of their chest, a dainty pink ribbon seems a bit trite. It has become a ‘thing’ in its own right and I wonder whether people see beyond knowing what it stands for?

God, there’s two weeks to go and it’s already winding me up. I’ve also got to get through the Macmillan Coffee mornings. Last year I was invited to several and most people didn’t know I had cancer. At least this year I’m out and proud, maybe I’ll go in sequins and represent cancer pride? I’m clearly not proud to have cancer, but I am proud that I am still here smiling (mostly). I am not going to hide my cancer (diagnosis) in any closet. I am also proud of my friends and family for all their support and ability to hold themselves together (around me at least). 

So apart from turning out cupboards and tidying sheds (can’t blame the steroids anymore) I’ve also been doing some ‘nice’ things. 

I’ve always had a bit of a creative side. I like painting, design and making things. I’ve resisted getting back into painting for fear of what might end up on the canvas.  I thought the anger (which is only recently making an appearance) might spill out through the end of my paint brushes creating a disturbing legacy of my inner mind. Stuff obviously needed to come out though, which is why I think the poems turned up in my life at the beginning of this year. 

Last month I signed up for a last minute art course at our local art place.  I saw it on social media late one evening and thought ‘I fancy doing that’.  Often this would be accompanied by ‘one day’, but I’m more of a ‘now’ person than ever before (for obvious reasons).  It’s very liberating.

If there is something you love doing or think you’d like to have a go at, do it. Don’t wait. 

The course was in geli plate printing. You use a silicone plate a bit like a giant slice of posh grown up jelly dessert or quince jelly on the side of a cheese board. You use this instead of a press or a screen to make a monotype print. I have never done this before, but I did textile design and screen printing at school and I absolutely loved it. I still have my work in the loft somewhere (that’s next for the turn out). I assumed the course was for a couple of hours. It was actually for a day. Husband was very accommodating, so all worked out brilliantly.

The course was absorbing, fun and very therapeutic as no one on the course knew me or that I had advanced cancer. The technique was also very conducive to my state of mind as it allowed me to be totally captive to something else with little room for the busy mind to race.  The teacher taught us a 3/3/3 principle which was the number of seconds you have to put the paint on, arrange your relief material (leaves in this case) and print. Then peel off and print again. Then more paint and go again. It was fast. Fast process, fast results. The total opposite of treating cancer. No time to think. Perfect for my anxious cancer obsessed mind. 

So since the day I spent covered in paint and immersed in creating prints at high speed, I have bought my own press and had a go at home.  Aside from the resulting prints (which are of mixed quality and success) the actual process was so engaging and cathartic that I’ll be trying it again. 

It got me thinking much more deeply about art and creativity. 

We tend to judge art on the end result and not the enjoyment of the process. The thing, not the experience. I genuinely like experiencing and trying new things. I get a thrill from learning to do something different, from the learning itself. It’s a cliche, but I guess we could all learn to enjoy the ride and not focus solely on the destination. After all, we are all going to end up in the same place.  The ride differentiates us. 

Statistic from Breast Cancer Care and Cancer Research websites.

Honour and Accept (Poem 13)

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.

17th August 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

Glorious Times

365 days ago today I’d been in hospital for a three night emergency stint with febrile neutropenia (low neutrophils, which are the white blood cells that fight infection and high temp), but managed to persuade my oncologist to let me go to Ladies’ Day at Glorious Goodwood.

I’m not quite sure how I persuaded him, my family were a bit sceptical, the nurses were dead set against it, but he saw the person not the disease and its risks. He understood that the mental attitude and determination of a patient was a key part in getting through the cancer treatment. He didn’t want to thwart that. I loved him for that. So off I went with a large copy of my file, a thermometer, blood pressure machine, my wig and my hat. And an equally ‘up for it’ sister.

It was so liberating. I’d done three cycles of FEC chemo and I had another three cycles of Docetaxel (Taxotere) to go. It gave me the energy and verve to get through the remaining nine weeks. Boy did I need it.

This year I planned a repeat – of the racing not the emergency or the chemo.  

As you know I was in the purple chemo chair late last night, but I managed to put my determined hat on, one foot in front of the other and catch the train to the coast for the sunset. A far cry from cytotoxic IV drugs. Today I was back on the racecourse again enjoying the beautiful south downs, lunch, bubbles (shh don’t tell the new oncologist) and afternoon tea. All in the company of one of my wonderful siblings. 

We didn’t have much luck with the racing – in fact I think it is the first time I haven’t had any winners or places – but my previous scans are showing that I’m coming up neck and neck with my disease, so I’ll take that racing form instead. 

Some people think I’m crazy cramming stuff around treatment, others a ‘legend’. I’m not sure either are right. I simply believe that in order to get through very difficult, uncertain physically and emotionally draining times you need to have something to look forward to. Little things and bigger things.

I seek experiences and events that shift your head from dreading another round of chemo to working out how to carry a case and a hat box to hospital and then the coast on a commuter train! It could be seen as displacement activity, but I’d far rather be chatting to fellow patients about horse racing and the beach than the damaging effects of chemo or prognosis.  I like to choose my own narrative and walk my own path.

As I have said before, the last 14 months have seen me face into some of the scariest fears and actual experiences.  The thought of leaving my children, possibly before they finish primary school, the thought of my parents having to attend my funeral. Triple Negative is an aggressive breast cancer with no targeted treatments (yet), so making the most of everyday and planning milestones of genuine quality time with the special people in my life is an essential part of surviving the gruelling and seemingly never ending journey of cancer treatment. 

I look back at the last year or so with fond, special, treasured memories. These give colour and brightness to the dark days and the uncertain grey ones. We all need a few glorious, splendid days and today was one of them. Full of striking beauty and colour.

Whatever you are facing in life, pockets of good simple times should be scheduled into the short and long term plan.  

‘Last’ chemo

So today is my ‘last’ chemo and I haven’t even written about chemo properly. I think that might have to wait. It’s just a bit too grim for today.

Suffice to say that not all chemo is the same and everyone’s reaction is very different. That’s why you have an oncologist who specialises in this dark art of managing the tight rope between efficacy and toxicity (think this is a polite way of saying killing the cancer or killer your organs/you). We haven’t killed all the cancer yet, but on the plus side we haven’t killed me either, so all good. Told you it was all about perspective. 

I put inverted commas around ‘last’ because when you have metastatic cancer (cancer that has spread from its original site) your know that your last chemo is unlikely to be your last. In fact it’s often the only treatment option to keep your disease controlled, so chemo kind of becomes your friend. Developing chemo resistance or running out of chemo options is actually a bad thing as it means your disease is out manoeuvring the possible treatment. You then move into palliative options that make your life more comfortable while the disease does its thing. Let’s not go there yet.

Back to today. Today is my last chemo for a while. That feels good. I have 18 weeks of four types of chemo last summer into early Autumn (which depressingly didn’t really work).  This Spring/Summer I had another 18 weeks. Still six cycles of the cytotoxic stuff, but this time I had two types (Gemcitabine and Carboplatin or GemCarbo to its friends) two weeks out of every three. I’m on a clinical trial so I might be getting immunotherapy too. Alternatively I might be getting water (placebo), which is frustrating, but a reality.  Even though GemCarbo is an older chemo combo I knew it was getting results with triple negative breast cancer based on my obsessive google reading. It was therefore worth the travel to a research hospital and the gamble of getting Atezolizmubab, which is also getting great results (more on that later). After today I will still have cycles of immunotherapy every three weeks. 

I feel very mixed about today because so far we think this chemo is working. It’s shrinking or should I say shrunk my secondary tumour. I worry that stopping it will mean it pops up somewhere else or starts growing again. Or it reoccurs in my chest wall, skin or sternum from the original site.

I think of metastatic cancer as mould spores. You know how they lurk unseen on bread, barely visible as tiny white specks, then BOOM, you’ve got patches of mould all over the side of the loaf. Leave it lurking at the bottom of the bread bin and before you know it, it has turned into an unrecognisable bag of dust. 

I don’t want that to happen to me. I think we’ll leave the brown bread and toast analogies right there. 

So we are on the hunt for those mould spores. Actually you know what, that’s rubbish you can’t even see them on the most sophisticated scan (A PET), so we can’t really hunt for them.  I prefer to accept that they are definitely there, we just need to be ready and waiting like ninjas for when they pop up. This is a more proactive and realistic way to view the approach to metastatic cancer. 

Between the blood tests and chemo, I’m having a CT Scan today too. I have them every 8 weeks to check for disease progression, or large patches of mould!  I have so many scans I even have a scan outfit (winter and summer).  It’s an outfit I have perfected that manages to be metal free and not look like pjs, whilst still allowing access to my port-a-cath. It allows you to complete you scan without the need to get dressed and undressed.  A time saving decision, plus it also saves the faff of trying to fit and re-fit my prosthesis or being exposed with one boob in a corridor.   

I won’t get the scan results for two weeks, but last time the treatment was working. Maybe I’m getting the immunotherapy or maybe the GemCarbo has worked.  

This constant cycle of treatment and scans can get a bit wearing.  I tend to approach it by making treatment options based on the worst case scenario and life decisions on the best case scenario.  I find this helps you make the best of each day whilst hoping that you are creating more days.

I was here this morning for bloods at 9am, but I won’t get chemo until much later as they have to do a lot of tests to make sure my body can handle the dose, then they have to order the drugs from pharmacy.  It is now gone 3pm and still no sign of a seat in a purple chair.  This means steroids after 4pm and no chance of sleep tonight.  Another thing to accept and roll with.

They are calling me in. Let’s do this one more time.

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

Through the Eye of the Storm (Poem 6)

Photo credit: my icklest ickle sister (24.7.19)

Through the Eye of the Storm

Not with glee or intrepid.
Started focused, calm and steady 
Blocked out noise and emotion around me.

Leading others and letting me be,
My choices. My journey. 
They said ‘you had no choice’
I prefer to say ‘I chose’. I used my voice, 
I chose my attitude; I chose some of the path,
I decided when to make people laugh.

In the dark, tuning into something bigger, deeper and quieter than you,
Your inner voice giving counsel, in the absence of a view.
Listen beneath the raging storm for your guide,
Despite the apparent lack of control; you decide.

At the end is certain death,
Timing unknown for that last breath
But sooner by their faces,
Beating this, another of life’s races.

The search for a force to pull you through, 
No direct experience to draw upon, nothing in lieu.
Umbilical cord gives you life,
But where is your thread of survival when this runs rife?

Experiences give you strength and some knowledge of endeavour, 
Loved ones around you, people worse off, all woven and twisted together,
Guiding you, empowering you, but not holding you up, not pulling you through.
This has to come from within you. 
Trusting yourself to navigate your new norm,
Your voice, your purpose, your choice, pulls you through the storm.

May and June 16th 2019

Nuclear Paradox (Poem 3)

Nuclear Paradox

It’s clean and shiny, reflecting and refracting,
The whirling and zapping is exacting.
The hands are kind and apologetically cold,
It’s a sight to behold.

The armour like bolus appears to protect,
Its position is something to perfect.
Looks are deceiving,
It’s here to trick rays into believing.

Zap, Zap, Zap

The friendliness of the people masks the radon reality
Small talk in a nuclear bunker seems like banality.
The two-foot lead wall,
Says it all.

Zap, Zap, Zap

Surgical stitches, dressings, tubes and drains,
Further encumber hauling up my body.
Node clear arms, clamped in reins.
How did radiation become my everyday commodity?

Zap, Zap, Zap

I try to welcome the beam in, searching for bad cells,
Breaking down left over bits of tumour walls. 
Imagining it blasting the baddies at the core,
Counter intuitive to endure 15 zaps, yet long for more,
Skin turning pink at last,
Before it becomes raw with each blast.

Zap, Zap, Zap

‘After the rain’ music and lights chosen to soothe,
Keep still, but remember your breath.
Breathe deep to calm, not so deep you move,
Too much stillness and all I can think about is my death.

Zap, Zap, Zap

Tiredness creeps up on me from within,
Outside, the burning soreness from my itchy, weeping skin.
Visualising the crust of cancer cells breaking off with glee
Will this be enough?  Or is the cancer still in me?

March 2019

Self Discovery (Poem 1)

Lathered up, I discovered you,
The need to check, another thing to do.
I never feared the worst, 
Preferring dark humour to outburst.

15thMay confirmed your type,
Much squeezing, sliding and punching the site.
Each appointment, test and scan with the hope of clarity,
In fact presented with enormous situational gravity.

Stepping back; disassociating; directing proceedings:
The only way to cope is through leading,
The unknown and ambiguous ahead.
The prognosis is grim from everything I’ve read.

Walking into the eye of the storm,
Facing into the horror and ordeal become the norm.
Treatment was the only thing making me ill,
Relentless chemicals were a bitter pill.

Knowingly carrying you around for six whole months,
Unknowingly growing you silently and calmly within.
Knowingly poisoning myself in the now,
Unknowingly letting go, as much as a control freak can subconsciously allow.

The time to cut you out could not come quicker,
Your tenacious invasive nature just made this trickier. 
You’d hidden deep and scattered,
You defied us all with your size and life,
No longer lurking underneath, your little cells were rife.

Your type defined by what you’re not,
No expert really knows what I’ve got.
The way forward clear only for moments,
Distorted and disfigured by new discoveries and documents.

The outcome is left unsaid, but known.
The route unclear and largely unknown.
The journey time unpredictable.
Propelling myself by embracing the ride and the unthinkable.

Cut away and stored in pathology.
Revealing you has revealed me.
Speaking my truth has become my ‘ology.
In the one sense tolerating less, in the other letting things be.

I choose to fight, but not to beat you,
Fighting to live, but not for life,
Each day is a gift of time in lieu,
Getting paid and getting on with my things to do.

It’s my choice to live, to laugh, to cry, to shout,
Being cheerful, learning as we go, is for me what it’s about.

3rd March 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