Time for some cheer

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.

They even have a poster to help manage your expectation

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.

Sometimes that’s enough.

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.

Isn’t it all a distraction until we die?

I have been distracting myself quite nicely this week by filling my time with productive ‘busy-ness’. I often do this when I don’t want to think about big things. It drives my husband crazy.  Watching telly and reading books are tricky as my mind wanders easily and there also seems to be someone dying of cancer or being diagnosed with it on every channel or page.  I guess that’s representative as 1 in 2 of us will get cancer and 1 in 7 women will be diagnosed with breast cancer.  It’s still annoying when you are trying to get away from cancer for a bit.

I can’t wait for next month and breast cancer awareness! It’s always annoyed me even before I had breast cancer – all those pink ribbons and decorated bras. Granted the awareness job cannot be denied – 5,000 people will be diagnosed next month. However, that pale pink ribbon seems a bit pathetic when it’s the second most common cause of cancer death in UK women.  That accounts for about 11,500 deaths a year.  So roughly 31 women died of breast cancer yesterday, today, tomorrow and the next day. 

When you spend time with women or being a woman on chemo for life, fighting the spread of breast cancer, dealing with lymphoedema, mastectomy nerve damage, one or no boobs, skin mets bursting out of their chest, a dainty pink ribbon seems a bit trite. It has become a ‘thing’ in its own right and I wonder whether people see beyond knowing what it stands for?

God, there’s two weeks to go and it’s already winding me up. I’ve also got to get through the Macmillan Coffee mornings. Last year I was invited to several and most people didn’t know I had cancer. At least this year I’m out and proud, maybe I’ll go in sequins and represent cancer pride? I’m clearly not proud to have cancer, but I am proud that I am still here smiling (mostly). I am not going to hide my cancer (diagnosis) in any closet. I am also proud of my friends and family for all their support and ability to hold themselves together (around me at least). 

So apart from turning out cupboards and tidying sheds (can’t blame the steroids anymore) I’ve also been doing some ‘nice’ things. 

I’ve always had a bit of a creative side. I like painting, design and making things. I’ve resisted getting back into painting for fear of what might end up on the canvas.  I thought the anger (which is only recently making an appearance) might spill out through the end of my paint brushes creating a disturbing legacy of my inner mind. Stuff obviously needed to come out though, which is why I think the poems turned up in my life at the beginning of this year. 

Last month I signed up for a last minute art course at our local art place.  I saw it on social media late one evening and thought ‘I fancy doing that’.  Often this would be accompanied by ‘one day’, but I’m more of a ‘now’ person than ever before (for obvious reasons).  It’s very liberating.

If there is something you love doing or think you’d like to have a go at, do it. Don’t wait. 

The course was in geli plate printing. You use a silicone plate a bit like a giant slice of posh grown up jelly dessert or quince jelly on the side of a cheese board. You use this instead of a press or a screen to make a monotype print. I have never done this before, but I did textile design and screen printing at school and I absolutely loved it. I still have my work in the loft somewhere (that’s next for the turn out). I assumed the course was for a couple of hours. It was actually for a day. Husband was very accommodating, so all worked out brilliantly.

The course was absorbing, fun and very therapeutic as no one on the course knew me or that I had advanced cancer. The technique was also very conducive to my state of mind as it allowed me to be totally captive to something else with little room for the busy mind to race.  The teacher taught us a 3/3/3 principle which was the number of seconds you have to put the paint on, arrange your relief material (leaves in this case) and print. Then peel off and print again. Then more paint and go again. It was fast. Fast process, fast results. The total opposite of treating cancer. No time to think. Perfect for my anxious cancer obsessed mind. 

So since the day I spent covered in paint and immersed in creating prints at high speed, I have bought my own press and had a go at home.  Aside from the resulting prints (which are of mixed quality and success) the actual process was so engaging and cathartic that I’ll be trying it again. 

It got me thinking much more deeply about art and creativity. 

We tend to judge art on the end result and not the enjoyment of the process. The thing, not the experience. I genuinely like experiencing and trying new things. I get a thrill from learning to do something different, from the learning itself. It’s a cliche, but I guess we could all learn to enjoy the ride and not focus solely on the destination. After all, we are all going to end up in the same place.  The ride differentiates us. 

Statistic from Breast Cancer Care and Cancer Research websites.

Time for Palliative Care?

Feeling pretty low today. A full day of appointments and scans in various hospitals. I think I’ve been triggered into a bit of a pensive mood by the text that came through about my psychologists appointment. It’s in the main hospital in palliative care not the main cancer centre.

Not dying to go through these doors – no pun intended!

The word ‘palliative’ has slightly freaked me out.

Intellectually I know that palliative care can happen at any time in your cancer journey, but it’s typically associated with end of life. It doesn’t help that when you google the definition. The other material or searches are about things like ‘the death rattle’; ‘do people’s eyes close when they die?’; ‘Does death smell?’ (Yes it does I have been up close and personal to that with my beloved Nan) and ‘end of life care options’.

Turns out google or their previous searchers aren’t up to speed with the broader definition of palliative either. It’s not just me then.

Reflecting on all of this, I’m wondering aren’t we all trying to ‘live as well as we can until we die’? If you’re not, don’t wait for stage 4 cancer to do it!

Back to my mood. I’m also feeling concerned. This is the closest succession of PET-CT scans I’ve ever had. My scans are so historically unreliable we want to do some additional ones to see if the picture is clearer and if I am on or off the trial and treatment programme.

So after my psychologists session, I’m waiting in line for yet another radioactive injection for my PET-CT, then to talk about family counselling and then for a CT scan. All in 4 different locations and 3 sites.

There is no way on earth that CT scan is not going to show disease progression. I can feel the secondary tumour under my arm, it’s making carrying my bag hard, there is also a suspected local reoccurrence near my mastectomy scar. This latter one I can feel and see and yet it hasn’t shown on any of the scans. Even the sonographer saw it and felt it with her finger, but nothing on the scan. Not big enough.

I’ve been bringing it up at every appointment. I know my body. I massage those massive scars across my chest every night and every morning so the muscle and skin doesn’t lock up further. All the layers of fascia that separate muscle from organs and bones are melted together by radiotherapy. This was once described to me as putting several layers of cling film on top of each other and then popping them in the microwave.

You get the picture.

Anyway back to the little lump. I know what my chest feels like and I know what is new. It was new in June and it’s still there. Just a bit bigger. It might be scar tissue or fat necrosis (think this means dead cells from fatty tissue). But I would bet a lot, perhaps even my life, that it is not.

I hope I’m wrong.

‘Have surgery, cut it/them out’ I hear you cry. It’s just not that bloody simple. I wish it was.

If I’m taken off this trial there is still no targeted treatment (or cure, that’s long gone) for Triple Negative Breast Cancer. The only way to get anything that MIGHT slow the spread is to find another clinical trial. Those of you that know me will not be surprised to know I have one in mind. BUT here’s the tricky bit: in order to get on a clinical trial you need a big enough piece of measurable disease. If we do surgery I won’t have this, but I won’t have the cancer lumps either. If it has spread elsewhere, we need something systemic (whole body), like more chemo. If we do surgery, this will delay more chemo. It will also be another big op. to recover from which will eat into quality of life in the short to medium term (which might be all we have).

It’s such a conundrum!

All my years in innovation, problem solving, insight and consulting are being stretched to their limit. I wish I was working on someone else’s problem not mine.

My gut feel says surgery. They are also talking about and recommending (until the latest growth) radiotherapy in the contralateral (left) side.

My gut still says surgery. I want us to get a good look at what is actually there, not what it looks like is there. I’m a reality girl. I just hope either surgery or rads are still on the cards.

I can’t bear the thought of just waiting for cancer to pop up and say ‘hi guys, I’m over here now, you can’t catch me!’.

I’m the meantime while contemplating all this I am rammed in my eighth carriage of the day and wishing I’d worn my ‘cancer on board badge’. Although wearing that feels like admitting defeat and I look and feel physically good and well today. I just have a scrabbled head and a growing sadness in my core.

Time to grab life with both hands again and get distracted for a few days…