Hoofbeats and Embers

I had to reactivate my social media for this amazing news!

After 2 years of campaigning Enhertu has finally been approved for HER2-low metastatic breast cancer.

​It’s a bittersweet win. We’ve lost so many since I first sat at the APPG—people who this treatment could have given more time to.

​Thank you to everyone who kept the pressure on, especially and

​Dare I feel hope for future approvals?

I am home
So happy to be in my own bed
It will take time to move on from the last 21 days
​The Cancer Ward is a hard place to be
Full of people doing everything they need to stay alive
Existing in so much pain
Yet fighting, driven by the deep human need
To keep living no matter the cost

Then there's some
Who choose not to treat
To accept what is to come
Knowing the path will run out very soon
Without intervention
Sometimes I wish I could feel this way
Just allow the darkness to swallow me
Swim in the peace of it

​
The wards are full of people
With numerous organs removed
Pieces chopped out of us
Bags hanging in every direction
Collecting the liquids of our bodies
Feeding tubes
Tubes for pain relief
Masks screwed tight to a bed
Holding you still enough to be burned by choice
Pregnant looking bellies on skin and bone frames
Poison running through veins
Hunting the bad
In the desperate hope it spares enough of the good

Immune confusing substances
A trade off of possible life changing consequences
For the chance of more tomorrows

Vomiting from all directions
Beds changed over and over
Incontinence in all its forms
Causing distress and stench

I sat in my hospital bed wondering
​Will they look back in a hundred years
And see this as we now see trepanning and electric shock treatment?

Is this medical expertise, or is it butchery?
It keeps us alive so it's hard to question
But it is a form of torture to stay alive
Despite the wonderful care

​There are only two choices: suffer it, or die
How much do I want to live?

​Woken to be poked, prodded, and stabbed
A learned helplessness engulfs me as I offer my arm
One more time, yielding to whatever is needed

Breathe in: four, three, two, one
Hold: four, three, two, one
Breathe out
It is amazing how often I look away
Tethered only to this simple rhythm of air

​
"What have you eaten?" they inquire again
As another untouched plate is carried away
How do you force down food when the appetite is gone?
When the offerings are vile
When the very thought brings a wave of sickness?

I know they are making me well
I know I’d be dead without them
I can only complain so much
But it is a lot to carry
To keep fighting

I shy away from simple blood tests now
Afraid my will to fight is wearing thin
At what point is enough?

​But I will get through this
I will be back in the sea again
I will ride over the moors again
And most importantly
I will be reunited with Grace

I will find a way to claw back some of what we’ve lost

Yesterday a foot massage offered
A wonderful brief relief

She asked about the scar on my leg
I told her the story: eighteen months old, full degree burns

She asked about my childhood memories
I explained how my memories do not begin until I was eleven/twelve
The medical trauma from aged 8
Causing my brain to be protective
Deleteting the bad and the good

I told her how I’ve been coming to this hospital since I was nineteen
How complacent I am about it
Because it is a lifetime of normal to sit in blue chairs
Taking whatever is on the menu that day through a drip in my arm
And then, cancer continued it on

​
Her reaction shocked me
It made me realise what a massive weight it is to go through
Most people do not live a life torn apart, over and over, by their health
Most people do not watch careers dissolve
Forced to rebuild from the rubble time and again
Because their bodies cannot offer stability

Most have not had to give up everything they love
Or watch relationships fracture because no one plans to be a carer
And the emotional support runs dry
Most do not face their mortality
Writing funeral plans and letters of wishes
In their 40s

​It is a lot
My life has been a lot
And looking back I am actually very proud
Of what I managed despite it

I am often so hard on myself
But if another soul had walked this exact path
I would hold them with all the empathy in the world

​So today I choose to turn that grace inward
I choose to give myself that kindness too

To give myself the time and whatever I need
To rebuild and put the pieces back together again

I can't rid the thoughts
Of when I might call time
Of how much more I can endure
At what point will the pain be too much
I am scared

But for now I cling to Grace's smile

Finding The Place of Peace: Life Tools For Troubled Times The Place of Peace is a collection of mental, emotional and physical habits, practices and ideas designed to contribute to the good life. It was developed to reduce non-necessary suffering, and to encourage human flourishing. I had been working on this for years and was on the verge of making it ...

Found my next horse living list adventure for when I am well again at Ranch Kuulas 🥰

How amazing does this look!!

Lapland Winter Trail Riding Holiday 7 days A week of horses, winter landscapes and northern lights in Finnish Lapland.

It was Grace's 9th birthday today. I felt so upset this morning not to be waking up with her at home to wish her a happy birthday. She spent the morning at Flip Out with a friend and then came to see me in the afternoon.

My friends were amazing. They got decorations, balloons, presents and cake. Then the hospital let us use a side ward and we had a mini party. She was so happy. Sometimes you have to make the best out of a sh*te situation and that's just what we did.

Forever grateful for having the best friends and family ❤️

Day 14/15ish if hospital stay, I've lost track!

Hospital Tips

Entertainment! Often I am too poorly to read or look at a screen thanks to the spiking temperatures, but having things ready for a peak in energy and concentration is vital!

Books of course are high up there. I am struggling to concentrate on a long novel right now so I have a book of short stories (thanks ) which is perfect. As is the Swimming the Seasons as I can dip in and out of it and visualise being in those places, remembering what it feels like and what I have to look forward to when I am out of here - I will escape!

Magazines are great to flick through and I particularly love the old horse magazines my friend brought in, included was a copy of Your Horse Magazine from 1995. What a year to go back to, I'd just finished school and it was before tech went mad!

My little laptop is also brilliant for watching some TV when I feel up to it. Sometimes it hurts my head too much but easy watches help pass the time. The WiFi isn't always great so I keep an eye and download what I can as and when the signal works!

Hospital Tips

Nice smells - because sometimes you need to turn your hospital bed into a spa, or at least try and pretend you smell ok and haven't not had a shower for a week 🤣

The sprays also work well for environmental smell issues that come with living on a ward...

The Oil Hut are my favourite brand and local to me. I have many aches the oils help soothe and with the amount of temperatures I am spiking the cool down spray is divine!

Off for my heart scan in a bit, will be sedated for this procedure which I welcome after the too many painful unsedated ones recently.

We are very lucky to have FORCE Cancer Charity at the RD&E site. I am trying to get across for a cuppa in the garden each day to help my sanity. It's day 12 of being incarcerated and watching my summer holidays with Grace slip by, so any glimmer like this is much needed and appreciated!

Hospital Tips

Slippers... in this heat no one wants to be wearing socks all day but equally bare foot on hospital corridors and in toilets isn't advised! This is where the good old fashioned slipper comes in!

Easily slip on and offable is the perfect design for the job of keeping your tootsies clean.

Make a statement if you can - I've gone for the Yeti foot look