“You look so well”

(For someone with terminal cancer)

Why do people constantly say this to you? Mostly I do look well. I make an effort with skincare and a bit of make up. I have a decent hair cut (as much as you can with post chemo curly regrowth). Despite my distorted and ever changing shape I try to wear clothes that make me feel good (balance of comfort, fit and style). For all intents and purposes I do look well. I am well.

Yet I have terminal breast cancer. I use that deliberately jarring word because unless I throw myself under a proverbial bus it is the advanced, secondary, stage 4, terminal, metastasised breast cancer cells that will kill me. (Although I have had a brief dalliance with a pulmonary embolism, but that’s a story for another day).

So, what does someone with stage 4 breast cancer look like? Even a year ago when I had stage 3 I didn’t think stage 4 would look and feel like this. This is why people sometimes write you off or feel pity for you when you have advanced cancer – they think you will look and act ill. I think it’s why they say [but] ‘you look so well’ in a surprised tone. They don’t fit the stereotype of someone with advanced cancer on their third series of chemotherapy and 7th chemo agent. It’s ignorance, maybe denial. Like me they think a stage 4er would be too ill to do most things.

Not me.

I’m still doing my upmost to grab life with both hands and be normal. I’m also on a quest to give people a perspective of what it is like to have to wake up every morning and face another day of tablets, treatment, appointments, fights to be heard and taken seriously.

The fight for your life every day.

The cancer is one thing, but the system is another. My daily fight is like this:

1) The system (disjointed, stretched past breaking point NHS system, drug company protocol, NICE guidelines, insurance company, the postcode lottery)
2) People’s ignorance, attitude and outdated stereotypical view of cancer
3) Treatment side effects (historic, cumulative and current)
4) My own demons and expectations about what I can do
5) The cancer
Once I’ve done that there’s the normal hectic life of a young family and that’s before the Christmas madness.

Despite this pile of things to battle I still want to enjoy my life and contribute to society. I crave normal, not extraordinary. I still want to help out on the school fireworks ‘glow store’ even though I couldn’t officially commit and just jumped on, on the night. I still want to do the garden, swim, cook, walk and work. Yes work.

I feel alive when I work. I feel like me. And that’s actually all you want to feel when you are fighting for your life. I was born to work. I love it. The week before last I did a piece of work designing all the facilitation sessions for a conference for 250 healthcare professionals. I trained the facilitators and made small talk through a sit down dinner. I smiled and offered paracetamol to the man with a cold and a headache. I did a good job. I contributed. I used my busy brain to help some other people and I earned some money. I was delighted to have the opportunity.

I checked out of the hotel the morning after and did battle with flooded rail lines. I got sent to Coventry (literally). I went around the problem (that’s what I do) and got home to dump my bags. I then turned around and got a train to London for yet another hospital appointment.

And you know what they said?

‘You look so well’

And I did. Yet, I was tired. My feet and hands were red and stinging from chemo induced side effects (apparently it’s the drug leeching out your capillaries) . I didn’t have enough oxygen from my low red blood count to climb stairs or walk far, my lymphoedema arm was enormous and heavy (32% bigger than my left arm). I could no longer get my coat on my arm. But I was still smiling and still keeping on keeping on.

It is a total paradox, on the one hand I want to be treated normally I am still me after all. On the other I am struggling mentally and physically to hold it together. I want and need to be able to park nearer or to have a seat on the tube, yet I look well and I don’t want special treatment. I am multi faceted and a contradiction.

I think I need to be kinder to myself. To give in to more help, so that I can get home from a whole day of hospital appointments in London and still have enough energy to help with the Roman project and read bedtime stories.

I suppose what I’m saying is I want people with cancer to not be marginalised by society because they don’t fit the mould of sick or well. Like me these people have much to contribute, but equally we need a hand with a few other things so we can keep doing so!

I want to be treated to live, not live to be treated.

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

Mr Jones (Poem 17)

You drew cartoon boobs when we first met,
You marked me up with Sharpie,
You were to the point and all set,
I joked about stories for a dinner party
,

Nipple callipers and sample silicon hidden in your case,
Rolling back and forth between the private and NHS side,
Driven by clinical need, patient outcomes and pace,
Your work ethic and commitment cannot be denied.

I wish you’d had a magic wand not a scalpel,
The scans seemed certain, but they lied,
Meticulous precision could not conquer the way these cancer cells rule,
We’re still keeping on; it’s one hell of a ride.

Months later I’m back, punch biopsy of my scar inside,
Pathology confirmed what I always knew,
I didn’t need the scientific view,
No time for more surgery, more systematic treatment; more time to bide.

Started June 2019 when I found a tiny lump the size of a pin head in my mastectomy scar.  I was reflecting on surgery. 

People thought I was paranoid.  They said It was scar tissue.  I know my own body. 

Finished in October 2019 when I returned to my original surgeon for his opinion; which confirmed mine. 

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.

A Bitter Pill (or 10)

There is no doubt that mentally it’s tougher to physically swallow chemotherapy. Not least when you were hoping to avoid it and try immunotherapy.

Breakfast in bed never looked so appealing.

The last 3 weeks have been a blur. I’m hoping I’m through the worst. This post has been written a bit intermittently. 

Most of you know by now that I was on the placebo in the last clinical trial. After a bit of a scramble, I was lucky enough to get on another clinical trial. The last place globally, with a chance of getting Atezolizumab. 

Unfortunately I got the control, so as you know I’m not on immunotherapy I’m on chemo again. I’m so over chemo.

Passage produced the first weekend of the new chemo, Capecitabine:

I am now dictating this in the dark with my sunglasses on because I’ve been in bed since Saturday night, it’s now Monday morning and I have been pretty sick since Sat. This is my seventh type of chemo drug and my third block of chemo cycles. Naïvely I thought that this oral chemo would be convenient and fit around my life.

Oh how I was wrong.

I feel more unwell than when on any of the other chemos. When you sit and think about it, or lie in my case, the chemo pills are going down my throat and into my stomach and through my intestines, which is a lot of surface area for a cytotoxic drug to be in contact with. I can only assume that this is why I feel so ill.

It may also be the dosage which they may alter, but for now I am still trying to swallow 10 bitter chemo pills a day. I can just about handle swallowing them, but once they have melted or partially melted in my stomach, bringing them back up again is one of the most unpleasant things I have had to endure.

I cannot really put into words the feeling of that acidic liquid burning my throat on the way out.

I really thought the first lot of chemo I had back in June 2018 was the worst (which is why I have yet to write about it properly), but this seems to have really knocked me for six.

As truly revolting as the vomiting is, the headache which feels like my head is permanently in a vice and the photo sensitivity are debilitating. I’ve been lying in a dark room since Saturday night. Unable to read, watch TV or talk too much.

I am unsure whether my body‘s reaction to this is just a chemical one or if I am psychologically rejecting the control; the injustice and all-round bad luck in missing out on Atezolizumab again.

Dictated notes from the first lot of Capecitabine.

I am determined to blaze through this drug in the hope that it is doing to the cancer what it is doing to me. The week before last I ended up back in the hospital in London because the vomiting wouldn’t stop. After some monitoring and a lot of hanging around, I was sent home with additional anti-sickness drugs (or ‘Auntie Soonest’ as my dictation wrote the first time. I quite like that, she sounds like just the kind of person I need right now!).

It is slightly surreal waiting in this Cancer Assessment Unit looking through the pouring rain at the twinkling lights of the city. The streets below packed with the aftermath of ‘Extinction Rebellion’ and the state opening of parliament. Looking out at these two different fights and the enormity of their meaning make me and my plight feel insignificant. I like that. Big cities, vast skies and coastal vistas all make me feel small. They calm me.

After the first lot of sickness I was given 48 hour respite from the chemo to then begin again. 

Once I started up the chemo tablets again it didn’t seem quite as bad; then three days later it started. I had the headache, I was dizzy I couldn’t really talk I couldn’t read or watch TV. Once again I am dictating this into my phone in the dark.

Chemo is a bit like childbirth. No one really tells you what is is actually like and everyone’s experience is different anyway. Universally it’s pretty horrendous going through it, but the potential reward is worth it. Moreover the end result seems to wipe your memory of the enormity of the process of getting there. However, unlike the birth of both my children I was not rewarded at the end of the last two gruelling journeys.  That has certainly been my experience thus far. All that pain and horror for nothing.

Actually not nothing: disease progression.

I am left wondering if this particular chemo is so bad because unlike the others it’s really doing the job. That is all I can grip onto as I endeavour to endure another day.

Cancer is truly an evil bastard. Its treatment is something else. It is impossible to fathom the paradox of feeling relatively well when you are off treatment, with tumours growing everywhere, versus being on treatment and being debilitated.

Mummy I preferred it when you just had cancer, you were ok then, I think the chemotherapy is making you ill, can we go back to you just having cancer?

As my daughter said, right back at the beginning of the first lot of chemo. She was six then.

That’s how I feel right now.  This is why people stop treatment. At the moment I am wobbling my way along a tightrope between tolerable drug toxicity and drug efficacy.

My daughter is seven now. She has an amazing ability to cut through the crap and describe the heart of the situation. For example, when we finished chemotherapy the first time I went on to have three operations, each one hoping to get a clear margin around the cancer. Each one failing in its mission. As I got the last pathology report back in early December 2018, I was truly devastated to discover that there were still cancer cells in the margins. Teeny tiny bits of cancer in my blood and lymph vessels. I knew these where tributaries of two crucial fluid systems that move stuff around my body. This did not sound like a good place for cancer cells to hang out, however ‘microscopic’ they were. My surgeon told me I would probably have to have adjuvant chemo (after surgery) as well as the 18 weeks of neo adjuvant I had endured before surgery. 

This was the first moment I lost it in front of a consultant. My head crashed down on the other side of his enormous oak desk.

Bang!

“F**k!“ I screamed.

When we tried to explain this to the children, my daughter’s reaction was:

So mummy instead of being nearly at the end, we are actually right back at the beginning.

She nailed it then too.

It seems that killing cancer has to happen in a way that makes it feel like it’s killing you first.  Chemotherapy is what you call a systemic treatment. It is undiscriminating, attacking my whole body because the harsh reality is nobody knows where those microscopic cancer cells are hiding now.

So long story short, the same thing happened when I restarted the Cape (as it is known to its friends(!!)).This time I decided not to go to A&E. I took my pulse, temp and BP at home and they were all OK (that’s the first 2-3hrs of being in A&E covered). I didn’t have an infection. I was massively dehydrated and exhausted from vomiting. We phoned the hospital hotline again and said we were stopping the drugs in order to get some fluids back into me. We did and within a few hours I was improving. Once well enough (ish!) to travel to hospital, the oncologist came to the same conclusion as me. It was the tablets and nothing more sinister.

Whilst my reaction was a bit adverse it wasn’t unheard of.

I checked the dosing levels for my body surface area (my husband worked that calculation out) and we felt I was on a pretty high dose. Tipping into the criteria for 10 tablets by a fraction. Chemo sounds like a very precise treatment, but the truth is the dosing levels are quite a blunt tool. It’s unbelievably a bit of trial and error. Thing is, it’s me that is being experimented on. I have had to have my dose reduced on every other chemo drug due to toxicity and adverse reactions, so I guess this is where we are headed.

So after some good peer to peer discussion the oncologist and I agreed that I would give it another go at 80% of the original dose. So only 8 tablets a day now. I’d also have a break until the beginning of the next new cycle to let my body recover. This has given me a week or so to get back to myself, which aside from the cumulative cancer side effects I am now. Hence I thought I’d better get you lovely lot up to speed.

I want to give this chemo a good go because as I have said before the list of possible options for TNBC is very short. I’d be a fool to write one off at the first (few) hurdle(s).

New dose, new attitude, new drug administration regime with three lots of anti sickness tablets.

Let’s do this.

Again.

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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