‘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

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

Welcome to My Blog

Ever since being diagnosed with triple negative breast cancer my friends and family have said I should write a blog or a journal. Trouble is I didn’t feel like writing. Updating everyone, answering and writing texts and WhatsApps was writing enough. Especially on the first lots of chemo that made my eyes go blurry and meant I had to wear dark glasses (even inside). Turns out one of the chemotherapy drugs I had in my first 18 weeks of treatment (Cyclophosphamide) is derived from mustard gas, so I guess that’s why.

I’m back on chemo again, but its more manageable this time. Throughout this experience I’ve been scribbling down odd thoughts in notebooks, scraps of paper and WhatsApps. The wonderful and growing number of people who are supporting me and my family are keen to hear how I am doing, so with some encouragement and an experimental attitude I thought I’d give this blogging lark a go.

I hope it makes you stop for a minute and embrace your life right now. I’d love you to have real conversations with the people who matter about the stuff that matters to them and you. Maybe you’ll look at the wonder of the natural world or be compelled to do what you’ve always wanted to do.

Maybe it won’t be for you, that’s fine too. If you don’t enjoy reading a piece move on to another or come back another day, don’t endure it. If you do get something from it I’d love your feedback. Feel free to follow and share the the blog and/or my twitter and instagram pages.

Click on the links for more information about why ‘The Cancer Gap”? or how I started writing poetry or my poems. Alternatively, just scroll down to the beginning of the blog or look in the menu on the top left of the screen. Have a nosey around, you’ll work it out.

Follow me here.

July 2019