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).
If you are reading this in an email or link. Feel free to visit www.thecancergap.com to enjoy and share other posts and poems.

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

What does ‘awareness’ really mean?

On the last day of blood cancer awareness month and the eve of breast cancer awareness month, I am wondering what awareness looks and feels like?

Less than two years ago I didn’t know what Acute Myeloid Leukaemia was, never mind its symptoms. I first became aware of it when our good friend Gemma Thomas was diagnosed with it. I received the call out of the blue to say she’d been diagnosed and was going to have chemotherapy.  For those of you following the story in the media you will know that 3 days later we received the tragic news that she had died. We were still in shock about the diagnosis, we couldn’t catch up with ourselves at the news of her passing.  She was a happy, healthy and compassionate women with a rye sense of humour. We still miss her massive smile and rolling eyes.

Simon, Gemma’s husband has just finished a whole month of challenges to raise blood cancer awareness for @Bloodwise. Judging by social media and the rise in google searches on the subject he’s done a great job. 

A few months after Gemma’s death, I found out my cousin Trudi has AML.  My heart was in my mouth, I could not comprehend that a disease I was not really aware of had taken someone in my life and could take another. I am pleased to say despite being put well and truly through the wringer on chemo, isolation units and stem cell transplants she is doing brilliantly.  Like me Trudi is passionate about raising awareness of her form of cancer and what it is like to endure the treatment for cancer.  I’m super proud that she made a film for Leukaemia Care to bring to life both the difficulty in spotting the signs (and she is a nurse with bags of medical knowledge and understanding of the system) and the mental and physical harshness of cancer treatment. 

Trudi Archer – Acute Myeloid Leukaemia (AML) – Spot Leukaemia

https://www.leukaemiacare.org.uk/support-and-information/latest-from-leukaemia-care/inspirational-stories/trudi-archer/

It is only in becoming aware of the symptoms of different cancers and their impact on individuals living through treatment, that we can begin to catch cancer earlier, and help people feel part of their community and society when they endure treatment or live with their disease. 

“Awareness, for me, is about ‘not fearing cancer’, but being alert for its signs and empathetic and authentic with people who are in treatment or living with cancer.” 

Two months after Trudi’s diagnosis I found my lump.  As you know I was diagnosed with Grade 3, Stage 3, Triple Negative Breast Cancer. This has now metastasised to other parts of my body as well as a local reoccurrence. So I am now stage 4 and have an incurable and inoperable cancer. There are no known targeted therapies or treatments for Mtnbc.  I’m trying to experiment with immunotherapy, but every three weeks someone keeps giving me the placebo. I’m hoping to get onto another immunotherapy trial soon. This and/or chemo hopes to extend my life expectancy. Sounds grim, right? 

But I feel and look really well.  Honestly.

Not at all like I thought someone with stage 4 cancer would look like. Even last year, with stage 3 cancer, I didn’t think stage 4 would be like this. I was pretty ignorant. So don’t feel bad if you are.

This is another reason why I write this blog, to raise awareness of living with cancer.  To help us all work out how we accommodate cancer into our everyday lives, because like it or not, cancer is here to stay. Much better to be aware and face into it rather than to ignore it or the people who have it. 

I think listening to these stories, and those of the millions of other cancer patients out there, are what cancer awareness is all about.  Not the pink ribbons and decorated bras which will no doubt be marching out from tomorrow and the start of breast cancer awareness month. 

Don’t feel you need to wear a pink ribbon or buy something for breast cancer awareness, but do go home and give your boobs or moobs (because boys aren’t exempt) a good check over!

I’m serious. 

The meaning of a logo

Have you ever noticed that when a news item becomes a bit more serious or drawn out it gets a logo on the BBC? The global economic downturn had one, the US Elections, the referendum etc. Brexit has had several, a made up name and it even got a dictionary entry!  I’m clearly not that newsworthy, but as I am now about to enter into my 18th month of cancer treatment I thought it was time The Cancer Gap got a logo.  So here it is.

The beady eyed of you will have noticed it at the top of the search bar or on social media.

I could have asked or paid one of my design colleagues or contacts to do this, but I thought I’d ask my friend who is teaching herself design.  She loved working on something real.  Or so she told me.  She explored a few options and together we came up with this.  She even dragged her IT husband into the task.  This is just one of many examples I have of people in my community going above and beyond to help and to contribute somehow.

I thought I’d do this update now as its pretty slow getting all the eligibility scans in place for the trial protocol.  It is only when I’m through this that they can confirm that I will be put on the trial.  

Distinct marque

For those of your following previous posts, the tiny maggot sized and coloured piece of me that was extracted with a punch biopsy a week or so ago turned out to be malignant.  So that distinct shape, wasn’t scar tissue, fat necrosis or my paranoia, it was a mass of cancer cells that have grown from some microscopic cancer being left behind. This is why you always want clear margins, the bigger the better.  Mine weren’t clear. Ever. So this is not a surprise. 

I first felt the lump as a pin head (that’s when they thought I was a bit hyper vigilant or even paranoid) and now its the size of a sweetcorn kernel and is a adenocarcinoma (a cancer tumour made of glandular cells).  They’ve sliced this little tiny maggot up into slithers like a cucumber into tiny rounds and put it on slides.  They have tested it for hormone receptors.  It has none.  No targets for treatment.  So as well as being a grade 3 tumour, it has 2 out of the 3 markers it needs to be classed as ‘triple negative’.  The HER2 status (the third marker) takes another week or so and I’m sure it will be negative again.  So it is the same Triple Negative Breast Cancer.  This cancer can sometimes mutate to be HER2 positive, so we have to go through this motion.  Once my tumour has finished its little trip around the labs of the south west of the UK, it (or another piece from one of the other tumours) will be put in some formalin and flown to the US or Switzerland.  Whilst my body is pretty much grounded, little chopped off bits of me are able to travel passport and insurance free.

Invasive breast cancer is tricky.  It starts small and undetectable and then eventually the cells join up to cause a lump you can actually feel.  A lot of breast cancers are ‘ductal carcinomas in situ’ or DCIS and never become invasive.  These are more like a boiled egg still in its shell, easier to cut around and remove. Whereas invasive cancer is more like scrambled or powdered war time egg or a Jackson Pollock painting. 

A pathology slide showing different types of breast cancer
(Image from Memorial Sloan Kettering Cancer Centre)

One of those little microscopic bits has grown into something that is still not traceable on a ultrasound. I even sharpie-ed up the spot beforehand.  The sonographer felt it with her hand, but the scan didn’t show it.  The PET-CT and CT scans didn’t show it either as there is so much other activity going on around this place from the surgery, scar tissue and radioactivity damage.  My surgeon said he always prefers physical examination for this kind of local reoccurrence.  

‘Once again, the grope test wins over tech then, but I guess you can’t say that’. 

My response to the surgeon.

Well, that got a little side tracked from talking about logos, but at least you are up to speed.

Tune into your intuition

If I could sign off with one thing it is this: don’t delay if you have symptoms or lumps you are not sure of.  Don’t be paranoid, but get to know your body.  You are so often the best judge of any changes or suspicious activity.  Tune into your intuition. 

I already have the mastectomy scars branding me a ‘breast cancer victim’.  However, a little lump, like a logo could be a recognisable symbol of early cancer or re-occurrence.  Its distinctive design, this time of cells, the malignant or benign deciding factor.  

Either way, for me, it is always better to know and to act.