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
I know the weekend’s post was a bit hard going. I lived it and reading it back was tough enough for me. So time for some cheer.
That’s the thing about cancer treatment; one minute you are crawling on your bathroom floor, the next you are whizzing around London having a fine time. Then you’re shattered again. ‘This too will pass’ has become regular self talk for me and many other cancer thrivers.
Today I made the trip for 10 vials of blood to be taken and tested to make sure all my organs are behaving themselves and have managed to process the 10 of the 14 days drugs I poisoned myself and hopefully the cancer with earlier this month.
Good news is, my liver and kidney function and my red, white and platelet cell factories seem in fighting spirit. And so too am I.
I’m still adjusting to the peaks and troughs of this new medication, but hopefully with a reduced dose and three lots of anti sickness drugs by my side I will navigate cycle 2 (and half term (!)) with a bit more grace.
I was lucky enough to get the prime viewing seat for my bloods today. The rain stayed away too.
Today involved, being weighed (1 min incl. lace up shoes) taking some bloods (10 mins), seeing an oncologist (which was less than 5 mins as I’ve been in and out with bad reactions so they are up to speed with my side effects), making an appointment for 3 weeks time (1 min), filing a prescription (2 mins) collecting two lots of drugs from two different places (5 mins) total to collect and walk between two places. So 24 active patient minutes. I left my house at 8.30 and got back to my town in time for a work meeting at 5pm. Granted the travel time is a big chunk of that, but I still spent over 5.5hrs waiting at various places or travelling between parts of the same building.
There has got to be some efficiencies to make there surely. I even transported my own bloods and handed them to a nurse to hand deliver to the lab, because the porter system can add another hour at least. No wonder we have a productivity problem in this country – all those people not working, but waiting, or waiting with someone who’s waiting.
I’m an impatient patient. You may have picked that up! I hate inefficiency. If I can see a quicker, better, different path I like to take it or find it.
That said, Knowing that today would be a waiting day, I planned some jobs and some cheer. In between sorting my annual accounts, finishing a poem, drafting this and picking up some presents I managed a bit of cheer. I stumbled upon a cafe behind the hospital and decamped for some non-vending lunch. I then met Jimmy of ‘London Hearts’ fame for a coffee and to pick up my commission of our very own ‘Cosmic Heart’.
As I had expected he was a lovely bloke and very humble about his talents. I started to shake his hand, but that felt odd, so I gave him a big hug, which felt right. We chatted a while about his work, my blog, legacy, reaching out and connecting to your loved ones and inspiring communities of people to do the same. I am so glad I stumbled upon those hearts, pressed send on what seemed like a slightly unusual email and met the heart behind some of the world’s street art.
Despite the waiting, today was a good day. I feel good.
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.
Amidst all the trial and randomisation anxiety of last week, you may recall I promised you I’d get in contact with Jimmy C of ‘London Hearts’ and ‘Shakespeare’ portrait fame.
I did this last Tuesday and both himself and the guy who commissioned the piece at Network Rail got in touch overnight. A great example of how we should all reach out to others, especially if they have inspired us and even if we don’t know each other. We are after all, all humans with an inate need to be connected, noticed and appreciated. They were both pleased to hear the positive impact the work had had on me (and my family). I have agreed to credit the work where possible and of course I am not about to make or sell products that depict Jimmy’s or any other street artists work. So all good.
While researching Jimmy’s art I also noticed that the Shakespeare piece has had an update (see below) since earlier in the summer.
Nothing stands still, it all evolves. In the same way that the recent rain has bought its own iteration of the drip painting under the arches.
On speaking to Jimmy I also learnt that the Shakespeare piece is available as a print for £60 from The Globe. He didn’t ask me to promote this, I just thought I would.
I’ve also commissioned a canvas of the cosmic hearts to hang in our home and remind us all that love is the best response in dark times.
12th October 2019. (Posted 16th October after a brief respite from chemo induced vomiting etc.)
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!
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.
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.
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.
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.
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.
Cancer effects communities, not just individuals. It is my family, friends and wider community who have held me upright or put me back upright.
It is a harrowing and relentless journey, so I need this support group. In their bid to help some of these ‘cures’ have been offered by my community and in my own sometimes desperate search to stop the spread I have looked into lots of these ‘cures’ myself.
Social media, tabloid media and forums are continually peddling these conspiracy theories and magic bullets. As a cancer patient it is exhausting and disconcerting to constantly have to fend these suggestions off, research them or question your own traditional yet barbaric medical choices.
In the end we don’t know what will or won’t work because there is so much unknown about cancer and it is a catch all phrase for so many different types of cancer.
What I do know is that I am donating my body and life to helping pharmaceutical companies, the medical profession and top teaching hospitals search for a cure or at least something that elongates the life of people with Triple Negative Breast Cancer. It might not help me, but it will help others. This is not how they research whether turmeric or kale (and those are sane suggestions of things I like) cures cancer.
Only 15% of breast cancers are Triple Negative. Even this is a catch all bucket for aggressive, invasive breast cancers they don’t understand or can’t easily predict. We do not have any targeted therapies for this kind of breast cancer. The prognosis is grim. We are not the same as your Mum’s neighbour’s best friend who had breast cancer and a magic potion bought on line will not save my life.
There is a place for complementary therapies in self and palliative care (another post I’m sure) but not in curing cancer.
I know you don’t know what to say or do, but a good place to start would be checking out or reading around a claim before you pass it on to someone as the answer to every cancer. Something you read on Facebook or in The Daily Mail is unlikely to be something that the oncologists and pharmaceutical companies have missed.
This article from earlier in the summer articulates this beautifully. This was shared in one of the forums I belong to. They have moderators who give their time free to keep the forum clear from people pretending to have cancer and then peddling hope for profit. Seriously.