The Path Beyond the Haze

I’ve been a little quiet in the last few weeks. There’s been a lot going on in and outside my head. I’ve not known where to start and didn’t want to be trite.

It’s not appropriate to discuss it in detail here, but we have been having a long term battle with systems that support our children to understand themselves, be understood and reach their potential. This has been a focus long before my cancer diagnosis, but it just got a whole lot more urgent due to me feeling like time was running out to fight their corner. Let’s just say it was on my bucket list to get done.

One day I hope my kids will see that using my energy and our money for their diagnoses will have more longevity and impact than a trip to Disney. I am determined that they are aware of their emotional and practical needs, how to ask for help and support to create and take opportunities in life.

My mum was always there for me (and still is), she put me before herself or others on so many occasions. Sometimes this was intense and difficult for me and other people in our life, but above all I have had the privilege and knowledge that I am loved immensely and unconditionally. I want my children to know that too. Like my mum I want to help them in practical ways, but also to help them know themselves and be proud of who they are. I hope they have already felt that, and will remember it fondly with gratitude. I might not be there, so I want all the people around them to do their best to nurture and support them to be strong individuals.

Actually they already are strong individuals, but I want my diagnosis to make them both aware of their vulnerabilities and the power of resilience. I continue to believe that my attitude to cancer’s challenges will hopefully give them values and lessons that will endure long after I’m gone. I’ve also always believed that it takes a whole village to bring up a child and we need this now more than ever.

It’s one of the many reasons I am open about my journey. My broad and varied support team are as invaluable to us now as I hope they will be if and when I’m gone.

This post is taking a surprisingly sentimental direction.

I’m anxious about my CT results.

I’m waiting in clinic to see an oncologist. The path forward is a bit hazy at the moment. I don’t mind tough terrain, I just want to know the plan. I’m hoping with equal parts that the current chemo is not working and is working. If the latter, I stay on my current regime. The former continues the fight for immunotherapy or any treatment that slows the spread.

I’ve waited 3 weeks for these results and it’s been two months since my last scan results. A lot can change in that time.

Where am I now?

I’m now on the last day of Cycle 3 of Capecitabine. I’ve been on the oral tablets 14 days on and 7 off for 9 weeks. With multiple anti-sickness tabs and a strong routine around food, I’ve managed to keep them down. The other side effects are pretty grim. The skin on my hands and feet is red raw and swollen, peeling in places and inflamed.

My fine motor skills are being challenged as my finger prints are smoothed out and the fingertips are bolbus. This is further exasperated by lymphoedema on my right arm and a suspected DVT. My iPhone doesn’t recognise my fingers and even hitting the right keys and letters is a challenge. My feet are sore after walking or standing for too long and they are burning hot.

I’m not letting any of this stop me walking or typing, but it makes it more tiring. I’m annoyed with my failing body. In fact what I am annoyed with is the chemo is effecting me adversely, yet it doesn’t appear to be working.

I wrote in a previous poem that I’m happy to poison myself in the now to see more future. With each chemo that fails this journey seems more futile and the path ahead less clear.

10th December 2019

Learn from the Poppies (Poem 18)

Learn from the Poppies

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


11th November 2019

You don’t have to wear pink (Poem 16)

You don’t have to wear pink

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.

18th October 2019 Breast Cancer Awareness Day

Street Art, Life, Love and Death

London Hearts – Borough Market, 2018

Who owns the images on the street? On our urban walls? When does graffiti become street art or art? Earlier this year whilst in London with the children we stumbled upon an uplifting piece that I immediately connected to. I think this is street art; apparently graffiti is done for other graffiti artists whereas street art is for a wider audience. Like many others we were compelled to have our photos taken with this happy mural. A bright and hopeful backdrop for many a picture of loved ones. Past and present.

Later when looking through my phone shots for suitable images for my blog, the above street art image popped out at me. It made me instantly smile. It felt right for the start of the blog. I don’t want all the chat about cancer to be depressing and melancholy. I want it to connect to you and others. There is a genuine out pouring of real love that happens with a serious cancer diagnosis. Or at least that has been the experience I have been lucky enough to have.

“I want people to be closer, more expressive and have real conversations with each other rather than a life masked or filtered through social media and conformity. “

I appreciate the irony as I write this on a blog and refer to it on social media, but what I try to do is to be honest and unvarnished. Sometimes this isn’t possible as I have to keep something for myself, sometimes it is unfair on my children, family or close friends to share everything, often it is just so raw I can’t even go there in my head, never mind on paper or in conversation. But I try to be as real as possible, and when I am, great things happen; to me and others. People around me are making life changing decisions, they are saying f**k it and embracing or planning for changes. What I love about this, is people talk to me about it in a way they didn’t always before.

A plethora of people have contributed to the creative process of this blog. From the small bits of encouragement with off the cuff comments about the style of my text messages or whatsApps, sharing of poems and the site, with significant and time consuming gifts like pro-bono executive coaching, logo design, help and confidence with publishing the blog. In the beginning, when I was toying with the idea, I hadn’t realised it was live. At least not until I started getting comments and followers from sincere and real people that I had never met! I then had to take the plunge and not look back.

So I am left with the dilemma of whether I should contact the artist, I’m not sure if I’m asking for permission, because I don’t know if I need it. But I’d like to thank him for his inspiration and mood changing role of his work. It’s a manners thing.

I went to a talk on writing at The Guardian a couple of months ago and met this great woman who was going to start a blog about street art. A weird coincidence. I asked her what she thought. Her view was that the artists liked the publicity and as I took the picture it was OK to use it. I described the art to see if she knew the artist, she thought it might be an artist from New York. He’s apparently fond of hearts and travels the world spray painting them. I looked him up – I didn’t think it was his.

With some light google effort I relatively easily found out who’s work it was. I also found that other works I had photographed and been inspired by were also his. Another weird coincidence. I also saw on closer examination that the work was signed and like many things in life, hiding in plain sight!

Portrait of Shakespeare, Bankside, London 2016

The work above was created by James Cochran (aka Jimmy C). The ‘London Hearts’ is one of his ‘drip paintings’ or ‘aerosol pointillism’. It is dedicated to the 8 people who lost their lives in the London Bridge terror attack in June 2017. James talks about the response of love in dark times. It was painted in Spring 2018, when I got my cancer diagnosis. This made it even more poignant and I was glad I’d included it. Those people didn’t invite terrorism into their lives in the same way that I hadn’t invited metastatic breast cancer into mine. I decided to write to the artist and let him know that he was part of a growing tribe of people who encouraged me to keep going, to keep telling my story and to hope that it will be longer than the Triple Negative Breast Cancer prognosis stats suggest.

I’ll let you know what he says…

I do believe that art shifts you, heals you, makes you think in different ways. There is a lot of it in and around the hospitals I visit and it definitely triggers something different. Not least that the people walking these corridors are worthy of some break from the monotony and blandness of endless hospital corridors and appointments.

Cornelia Parker – Still Life with Reflection, 2004

I am not sure what this ceiling installation is trying to tell you? Each piece of silver, or likely silver plate, is reflected in a flattered version of itself. Is this the juxtaposition between the multi dimensional us and the one dimensional us? Or was it more tongue in cheek? As the owner of one boob and one flat chest I couldn’t help but think it was ironic in a clinic with people who’d had breast surgery. It gave me something to think and laugh inside about whilst waiting for yet another consultant.

Again I looked this piece up and the artist, Cornelia Parker was interested in the captive audience of waiting rooms where ‘time and reality are suspended’ (so true) and was influenced by tromp l’oeil. This is a technique often used on ceilings to ‘deceive the eye’ into seeing something three dimensional. She has done some similar pieces, more recently, one of a series of ‘alter ego’ works in 2010.

So just goes to show we draw our own meaning from art and our experiences regardless of the artists intent. For me art does trigger or jolt me to think in different ways, to make connections and uncover insights that I wouldn’t have done if I hadn’t seen it or created it. I am grateful for the rich and vibrant art scene we have in this country and am delighted that I can stumble upon it on the street and in hospitals.

Look out for it on your travels this week. Let us know if you find any interesting bits?

Written on 26th September 2019 (to post later because I knew these last few days would be tough, and they are).
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