It’s only a day…

Except to me. Today is the day that my life, my children’s and my husband’s life changed forever. Today is the anniversary of the day I was told I had advanced breast cancer. The day my lump was confirmed as an invasive ductal carcinoma.

They knew it was bad, but not even the medical professionals knew how bad until all the tests were back. It was about two weeks later that I knew it was triple negative. A few days before this I had read about triple negative and what that meant for the future of patients with this rare form of breast cancer. So when they obtusely revealed that the tumour was oestrogen, progesterone and HER2 negative, I was able to say to my oncologist “so I’m triple negative then?”. He knew, by my knowledge and question that I knew what that meant. Trouble is not many other people do.

About six months after the 15th May 2018 I was confirmed as having secondary cancers in my contralateral (opposite) axilla (armpit). It had only been days since I finished my radiotherapy for my primary tumour. So since 15th May my treatment has just blurred into one long endurance test that keeps on coming. It is relentless.

Right at diagnosis I remember my breast surgeon telling me I’d have 18 weeks neo adjuvant chemo. 18 weeks – seemed like such a long time to put my life on hold for. I was trying to mentally calculate the client projects I’d have to juggle around this inconvenient blip. And yet here we are two years on and I’m still having chemo. My main concern now is running out of chemo options. I’ve now had eight chemo agents and one immunotherapy. Not including placebos. Each cycle is usually three weeks. That first bout was six cycles of three weeks. I’ve now lost count of the number of cycles of chemo I have had. It is the three week rhythm of my normal life. When it stops, I’ll have stopped.

I am now on my third line treatment (this is confusing terminology as its my fourth chemo combo, but they count from one when you get a secondary tumour). This is important as options reduce the more lines of treatment you have had. This is for a number of reasons:

  1. Physically running out of chemo agents for your cancer
  2. Strong indication of chemo resistant tumours
  3. Clinical trial eligibility – these pharma companies like their lab rats as ‘un-messed with’ as possible
  4. Cumulative side effects – there is only so much pummelling your body can take before your quality of life is so shit you say ‘enough, i’ll take my chance with the cancer, enjoy what time I have left.’

I have just finished cycle five of Atezolizumab and Eribulin. I don’t think it is working like it was. One more cycle and I will have done the same as that first 18 weeks of neo adjuvant chemo. Back in May 2018 it seemed like such a long time to put my life on hold for. Now it is my life. It is keeping me alive. It is holding the cancer train back. Just. I hope.

People are afraid of Covid-19 and friends and family worry about me having treatment in a Covid hospital two weeks out of every three, but the reality is my risk of dying of cancer is much higher. The maths is pretty easy. As a fellow metastatic Triple Negative Breast Cancer (mTNBC) friend of mine put it, the mortality rate for mTNBC is 100%, versus c3-4% for Covid-19 (or whatever they are quoting this week). Even without the figures, my eight year old gets the maths. She’s bright enough to know that despite me being on the extremely vulnerable list and us shielding, it is still better for me to go to the hospital and take the Covid risk. That said Covid and Cancer wouldn’t be a combo I’d relish.

I am very confused about how to feel today – my cancer-versary. I haven’t mentioned it to anyone (this post might be a giveaway). I didn’t stop crying yesterday. I went to bed at 5.45pm, which I’m sure was in anticipation of today. Earlier this week, my husband booked today off work. He said he fancied a break from work and wanted to get some jobs done in the house. I’m still in bed typing this, he’s in the homeschooling/housekeeper hot seat. I still don’t know if he has remembered or not, or if it even matters. Some people’s cancerversaries are celebrated as cancer is behind them, they are clear or have no evidence of active disease (NEAD). I’m not sure how to be on mine? I’m still in treatment. But that treatment is also keeping me alive.

Oncologists don’t like to talk about prognosis or estimated survival rates or the time you have left. It doesn’t really help and frankly they don’t know. I’m bucking the trend for average survival after secondary diagnosis, so maybe I’ll surprise everyone. On that basis today should be a celebration that I am still here. I am very much ALIVE! Despite a lot of pain, side effects and increasing disability in my right side, I do feel lucky.

Tired, emotional, but lucky. So let’s celebrate that.

15th May 2020

Lockdown Love In

I understand that we are amidst sombre and serious times. The daily death toll is a reminder of the severity and cost of this pandemic. This regular drum beat of the news can numb us to the sheer number of real people who are being killed by Covid-19. Despite the sobering reason for lockdown, there are quite a lot of things I like about it.

Life is simpler, which is saying something from someone who has had to ‘shrink’ her life and clip her wings considerably in the last two years. It’s just a bit calmer. Everywhere. So many fractious family moments were about getting out the house with the right stuff at the right time. Now none of that (Zoom call log in’s aside).

Appointments and meetings that were previously ‘impossible’ to do over the phone are now slotted neatly between bread making and home schooling. rather than dominating a whole day of family/work life. I realise that sounds so idyllic, rest assured that both usually involve unmet expectations and swearing! When I do have to travel to an appointment like today, it is a breeze. A 3.5hr journey to the trial hospital reduced to 1hr 20mins; parking right outside; patients only in the hospital and a lot less of them and previously critical parts of each treatment cycle no longer required or streamlined. Above all, a lot more civility and appreciation of each other. All this has massively improved my quality of care and life.

Why did it take this, to challenge and shift the status quo?

I have been in communication, innovation and change most of my working life. I understand about entrenched ways or working, about stuck patterns of thinking. This is why i have to push clients to think differently. I ask them to role play made up scenarios, to consider the opposite of every aspect or assumption of their business or to use ‘imagine a world where….’ cards to stimulate them to activate the side of their brain that is creative and unaccepting of ‘how things have always been’. When I wrote the ‘imagine a world where…’ cards I had examples like ‘we all have to work from home’; ‘there are no schools’; ‘food is rationed’; ‘poorer paid work is more respected’; ‘brands matter less’; ‘people are grateful for small things’ and ‘our local communities are revived’. I sometimes had difficulty encouraging clients to imagine one of those things happening in their life time and I certainly didn’t imagine all of them and many more happening together in mine.

As an individual and a consultant, I naturally look for a more efficient way or a better experience. I do challenge ‘the way things have always been’. I’m restless, so I like to find ways around, ways through (avid blog readers may have noticed this trait of mine!). This is not the way of large corporate organisations or institutions like the government or the NHS. However, stuff that was deemed tricky or impossible in the world of cancer treatment, palliative care and counselling is all being turned upside down and delivered by digital means.

Needless and unchallenged processes, protocols and paradigms, once set in stone have dissolved. In days or weeks Government, food service logistics, local councils and multiple grocers have collaborated to deliver boxes of food and essentials to our vulnerable population. I’m considered one, my disabled, housebound, 89 year old mother-in-law who lives alone is not – I’ve worked around this since (she will make better use of the 1970s throwback tins than we will anyway).

Virtually overnight a joined up NHS app allows chemists, doctors’ surgeries and patients to interact in lightening speed. I no longer wait in a phone abyss to make an appointment with my over stretched GP to get a repeat prescription. I then don’t wait in a germ ridden waiting room or queue up at the chemist to find my items are yet again out of stock (and this was before lockdown and Brexit!). Now I effortlessly tick a box on my phone, while swotting up on the definition of a ‘relative clause’. Then a few days later, when the item is in stock a lovely kind person appears on my doorstep (just like the shopkeeper from ‘Mr Ben’, as if from nowhere), with the complete order of my prescription. It is so God damn efficient. Although, I’m sure my pharmacist and GP miss my incessant visits.

The BBC (another great institution I hope we will cherish post this pandemic, rather than take for granted), have collaborated with educational brands like White Rose Maths, Twinkl and many others. They have produced fantastic structured resources and lessons for every school year over the Easter holidays. Something that would no doubt have taken months or years to negotiate copyrights, access and IP pre-Covid and the home schooling crisis.

Even zoom socials are better for me. Forget covid, any cold or cough germs have previously put me in hospital. My white blood cells too scarce to fight off common everyday bugs. I’m often too tired to last the duration at adult events, or muster up the energy to get ready. Zoom avoids a lot of this I even skipped lipstick and the prosthesis with one good friend!

Aside from the practical benefits of lockdown, there are some psychological ones too. I feel less obligated to do things and this makes me feel less guilty. I also feel less like I’m missing out on my fulfilling career, overseas travel and the exciting adventures that social media would have me believe ‘everybody’ else is enjoying. As I said on 19th March, it is great to welcome the rest of the world into my uncertain world. Even if its only for a brief while.

Imagining the unimaginable and dealing with uncertainty are definitely skills that advanced cancer patients have been trying their hand at mastering for longer. It is still tricky, but in lockdown we tend to spend less time longing for an exit strategy and more time enjoying the moments. Maybe this is because our exit strategy from uncertainty is pretty final.

28th April 2020

Hope

I have long been a lover of nature. The contrast of the seasons has been one of the many reasons I never took or sought out roles or career moves that had me in sunnier more consistent climes. That and what I like to call the depth of our soul, the history and quality of our architecture the richness and comforting nature of our communities and traditions. Since turning down a job in Sydney in my 20s, I knew I was a home girl. I like being near my family and my many and varied friends, I like Blighty and I love the four seasons. None more than Spring.

Spring is always a relief. I’m begging it to arrive as soon as the first snowdrop is up in January.

Snowdrops pushing up through winter’s hard baron soil

That white dab of light in a dark long winter. I then look forward to the daffodils and the hyacinths in everyone’s gardens and the glorious lines of hopeful yellow bursts that flank the sides of my road. Daffodils I helped plant nearly 15 years ago, that keep on coming. Making us all smile because we know the light nights and longer days are on their way.

I get my love of daffs from my Mum. Wordsworth was onto something too.
A beautiful iris, its delicate petals being jostled in the wind

Spring is my favourite month. I think it always has been. My depression is definitely worse in winter. Daylight and the feel of sun gently warming my skin certainly warms my soul and makes me believe that more is possible and I can cope. I have to make less effort to hide my inner loneliness and black dread. I’m always a smiler, but spring makes my heart sing. I smile inside and out.

A few days ago I went on a short walk around the block. I was having a rare moment of being physically alone, alone in good way. Alone in suburban nature. I was listening to the bees in the blossom and the birds, who’s song seems happier now that they don’t have to fight with aircraft and traffic. I always try and tune in to my surroundings. Whilst often being focused on my end goals or ‘to do-list’ I always try and notice the details of the periphery. I am also blessed (I think it’s a blessing) with an incredible memory. If I experience things in a multi-sensory way, I remember them. So I play attention to my senses.

A lone hyacinth in my front garden

On this walk I notice the smells of spring too. That fresh smell that comes from new shoots and blooms previously hidden deep in a dusty looking bulb. Of starting afresh.

I wish.

In my garden my husband and I (makes me sound like the Queen!, but I’m trying to avoid naming people) have planted a few little beauties which pop up every year, sometimes taking us by surprise. The peony is another favourite, it’s petals so tightly and neatly snuggled up to each other that they create a near perfect sphere, before bursting to life.

Surrounded by all this new growth and life I wonder if the cancer cells I harbour are shooting new blooms and tendrils or dying back like an internal winter.

I briefly contemplate how many more springs I will enjoy, but for now I want to drink in this one. To meditate in its rich, bright and hopeful palette. To forget about cancer and to leave the screaming children at home while I wander quietly around the block.

Sadly, the welcomed early warm weather will dry up all the beauty of spring petals, stealing their scent and wrecking their form. Some years I feel I wait so long for spring it’s a shame to rush through it.

Much as I love the warmness of the sun on my skin I want to linger in spring and all its gifts a little longer. ..

The annual wonder of the magnolia tree. It’s robust yet fragile blooms. A tree I’d love to have in my garden, but haven’t had much luck with.

5th April 2020

All Change at Piccadilly

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This time yesterday I was doing a yoga class on Zoom and today I am desperately trying to finish a blog post in bed before the kids wake up. Why the keenness? At 9am my laptop gets seconded to ‘home school’ and I don’t see it until later in the day. Normally when I’m doing after school snacks and prepping dinner. I then have to log the kids on to their Zoom calls with their class mates! Which I think are great as the lack of peer social contact is having quite a negative effect on both my kids. Yesterday I took the opportunity to go for a walk (with my son) while my daughter was ensconced on a slightly crazy seven way Zoom call with a handful of the 8 year old girls in her year group. It was a joy to see all their happy little faces, yet I wasn’t sorry to leave the squealing behind. Earlier that day (P.S I’ve learnt yesterday that that is a fronted adverbial!!), I’d joked on a WhatsApp that Zoom was the new babysitter. However, I cringed when my husband informed me that one of our friends (another of the 8 year old’s Mum) had called him because our daughter had managed to turn her camera off or something similar and was having a meltdown on the call. I had asked him to keep an ear out for her, but I was slightly amused at this digital to human hands on work around my daughter had triggered.

Anyway I digress (as usual).

Those who follow me on Insta will know this, but for those that don’t: it is with huge relief that I can confirm that my bloods came back up the Friday before last. My neutrophils went from 0.4 to 18.8 in less than 3 days. The extreme back pain from the GCSF injections was worth it. I got my Day 1 treatment. And again by the skin of my teeth (neutrophils came in at 1.1) I got my Day 8 treatment. It was a bit odd in London that first Friday, but nothing like the Friday just gone.

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My brother on the apocalyptic Millennium Bridge Friday 20th March at lunchtime

That day was more than eerie. Whilst a week or so ago there were less people (the Millennium Bridge had not even a handful of people on it) and less traffic, on this latest Friday the shops and cafes were dark, chairs stacked on tables in the middle of the day, all the shutters down in Hatton Garden, some pubs and shops in the city were already boarded up, presumably to avoid vandalism, looting or squatting.

Today, I was with my brother. We spent a lot of our childhood Sunday’s driving up to London and seeing the sights from the car before parking up and going to a museum or a favourite haunt of my Dad’s The Tower Hotel Carvery (it was the late 70s/early 80s and it made a change from a Berni Inn, plus they had free parking for patrons).

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Throw back logo

One of my many memories of these Sunday jaunts was quiet roads and pavements, and closed shops. Resturants and museums being your only available open establishment. But last Friday it was deserted. We had a green light pretty much from Hammersmith to the Holborn Viaduct. We sauntered round Piccadilly Circus in my brother’s van, taking pictures as we went. A journey that had been taking 3.5hrs we did in 1hr 10mins. We arrived so early we had to wait in my brother’s van before queuing to get into the hospital. This is no hardship as he has a kettle and an enviable array of herbal teas, coffees, soups and hot chocolates. I’m loving hanging out in this van with my little bro (he looks after me like he’s older, but he’s actually my second youngest sibling). I’ve spent a lot of my life sitting next to my Dad or my brother in a van or lorry. I even learnt to drive in a little van!

My brother carried my bags to the hospital building queue, but left me there. It was 8.15am and the queue (2m apart) was already long to get inside the hospital. Once in the lobby security made sure I sanitised my hands and then I completed a Covid-19 questionnaire/checklist with a nurse who then signed the form that allowed me in the hospital. I then made my way to the place to have bloods. There were 2m tape makers to queue for the lifts, but no queue. There was only me and about 5 other people in the entire ground floor of this central London hospital. You could hear a pin drop while waiting for that lift. The lift itself was divided into 4 spaces (not strictly 2m apart, but they were trying). Today, for the first time ever, I was the only person in this lift.

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Social distancing attempts in a lift

Once on the chemo floor, it was busy. We had to wait to go in to the bloods and chemo waiting room. No one allowed in without having their temp. tested.

Last week this had been quite jovial. We had all had our one guest/relative with us and a chemo patient from a couple of generations above me started singing Vera Lynn Songs. We all joined in. We felt united, cancer patients, facing chemo yet again with Coronavirus just another challenge to overcome. It had an ‘in it together’ spirit that I had felt many times on a chemo ward or on a TNBC forum, but this time it had bells on – we were singing Dame Vera Lynn FFS.

A week later the wait outside the waiting room had a somewhat sombre atmosphere. People were on their own. Relatives left outside the hospital. Everyone was jostling to keep 2m apart, yet not lose their place in the queue and all the while dodging the new patients arriving gingerly from the 3 lifts. Lifts that opened straight into this unspoken, eerie, seemingly haphazard, yet strategically placed ‘queue’. It was weird. Once in reception patients chose their seats to keep as far away as possible from the people already seated. It was a bit like picking your spot on a beach that is filling fast. I even had a towel, blanket, packed lunch and a cool bag. It gets cold having your head and hair follicles frozen for 3hrs. On the advice of a friend, I also take a big bag of frozen gel packs that I wear on my feet and hands with special foot sleeves and a pair of my husband’s old socks (on my hands). Alledgedly, this will help prevent nerve damage and the chemo getting right down to your outer extremities (in your capillaries). I have had a lot of peripheral neuropathy and am still dealing with a lot of numbness and nerve damage in my right hand. I can’t feel or use my pinkie or my ring finger properly. This pain is indicative of damage to my ulnar nerve. My physio, pain relief therapist and lympodema nurses were making a big difference to this and other pains. The movement has been improving in my whole right arm, but it’s impossible to receive hands-on physio, deep trigger point or lymphatic massage over the phone or internet. So, whilst struggling to carry my cold blocks and to put them on myself, I do it because it just might make a difference to my comfort levels, use of my limbs and my quality of life.

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This was me looking like a sea lion with my ice blocks in place a few weeks ago. No photos from other people this time.
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This time was a far more sombre affair. 3hrs of this and limited use of my club hands.

The atmosphere in the chemo bay is one of caution, suspicion and the unknown. Almost no chit chat amongst the staff or the patients. Each one dancing between politeness and wondering if they/you are the person that will unknowingly pass Corona on to them. At home I am waiting two days to open post and touch envelopes or grocery packaging, but here I have a chemo nurse right under my chin attempting to access my port.

I can feel her breath.

This doesn’t feel like social distancing, but what bloody choice do I have? Stay at home for 12 weeks plus and let this aggressive cancer take hold again. Cancer cells growing in my pleura causing me to feel like I am drowning in my own lungs. Cancer cells blocking my blood vessels and lymphatics so my arm blows up to over 3 times the size and weight of the other. Cancer cells growing in the nodes under my arm so I can’t lift it and pushing on my nerves causing deep crackling pain. Cancer cells growing in the skin on my chest and mastectomy scars, so it is so tight it restricts movement and eventually the skin breaks and God only knows what breaks out of my chest wall and will not heal over.

No thanks, I’ll take my chance with Corona.

Obviously I don’t fancy getting it or being the one who might bring it home to my family, but given the choice between the certainty of the cancer taking over or the chance of getting Corona (even with complications) I know which I will continue to chose. I’ve spent nearly two years on treatment that has not really worked and now after 13 months of teeth gritted determination I have finally got a drug combo that seems to be working. I’m not giving up on that lightly. Not on your Nelly.

Once I have had my chemo I head out of the hospital in silence, alone, with all my bags and a heavy heart. I have had over 3hrs to think about this hand of cards I have been dealt and have tried to play as doggedly and as positively as I can for nearly two years. I am tired and overwhelmed by sadness. Sometimes, it is just too much to bare emotionally, never mind physically.

I pop out the hospital grounds and see my trusty, solid (no offence) brother in his familiar, safe van and I burst into tears. We abandon social distancing and he gives me a bear hug.

Time to get the van kettle on and sail home through the baron and still streets of London.

Chemo & Immuno on 20th and 27th March 2020 finished on the 31st March 2020

The Joy of the Magic Doorstep

“Not all of us can do great things.  But we can all do small things with great love”

Mother Teresa

In my experience of an advance cancer diagnosis people don’t really know what to say. Questions to understand it seem insensitive and risky as you have to be prepared for the answers.  Words of reassurance are tricky.  A lot of people opt for the head cocked and pitiful smile when they see you or just plain avoidance.   However, there are a pretty large and surprising number of people who opt for action.  

As an action junkie I relate to this as it is what I have done in similar situations. When you feel devoid of words, action speak volumes. Sometimes you just have to do something.

Back in May 2018 I was astonished with the direct and decisive action people from all areas of my life took. The night I got home from receiving the diagnosis one of my sister’s just turned up despite being told I was fine and didn’t need her to come.  Obviously, I was about as far away from fine as you can be, but I had to pick the kids up, feed them and get them to bed without falling apart. We didn’t tell them straight away. We didn’t know what to say. We hadn’t even told immediate family. We couldn’t find the words. We were in a trance like state. In fact we had a prior appointment with a will writer to do our LPAs and update our wills. So that is what we did on the evening of the day I was diagnosed with invasive advanced breast cancer. 

You can’t make these things up. 

In a film that would seem ridiculous, but in fact it was what we did that evening. It turned out to be a very practical thing to do. Having one of my sister’s there was a blessing as we were able to have difficult conversations about guardianship. Our original wills were no longer practical given the very real possibility that at least one of us would be taken too soon. 

My sister also took on the unenviable task of telling the rest of the family. After that, the wheels were in motion, everyone went into action mode. 

Within days of diagnosis, my sister said, ‘You’re going to need a big freezer’ I replied ‘what for?’ She said ‘all the meals’.  

She had inside knowledge from friends with a cancer diagnosis. It was a matter of days before my Dad turned up with a freezer and my extended family brought home cooked freezable food.  

But that wasn’t what my sister meant. 

Nothing could prepare me for the deluge of home cooked meals that would turn up on my doorstep as word got around. I’ve joked before about the number of lasagnes, but not one went to waste. Every casserole, spag bol, curry, cake, soup, biscuit, flapjack, crumble  and many more dishes of love were gratefully received.  They nourished us through those early trance-like days.  The blur of appointments and scans with news getting worse by the day.  We put one foot in front of the other and one home cooked meal in the oven and we got through it until we could think again.

We are still lucky enough to receive meals today and they are all a gift of time. Time that we don’t have to think about preparing a meal. Time we can spend with each other or on tasks that seem to take so much longer now.  It is not something we expect or always need, but it always makes us feel cared for and loved. One person in particular has never stopped giving us meals. She’s a wonderful cook and even has a drawer named after her in our freezer. There’s always something good in that drawer. We call her our ‘Cancer Angel’ and she is a very special woman who I have got to know in a deeper way since being diagnosed. 

As an aside, my then 6 year old, found all the meals confusing. She asked me if we were poor, now I had cancer. I was perplexed.  Where had this come from?  But soon I understood when she elaborated “but Mummy you always say ‘you have to go to school, Mummy and Daddy have to go to work to earn money to put food on the table and a roof over our heads’ and you haven’t been to work as much and people are already bringing us food”.

It all made sense from a 6 year old’s perspective.

All sorts of kindness poured onto our doorstep and through our letterbox. People and gifts showed up in all sorts of guises from all corners of our life and the world.  I was and continue to be truly humbled by peoples’s kindness. Amongst other things, we have been lucky enough to receive flowers, beautiful, honestly written cards, poetry books, magazines, books, Chemo kits,  fruit and veg, solid gold engraved lego brick, jewellery, good luck charms, bracelets, Christmas decorations, charms for good health, ice pillows (for night sweats), shawls (when my arm was too big for a coat) and just last night aloe vera socks for my peeling bleeding feet.

We also got several tomato plants and a courgette plant. One lot even arrived with its own grow bag. I loved planting these and enjoying the fruits of my labour all summer long. Reminding me of the thoughtfulness and kindness around me.  Feeling a sense of satisfaction when picking the fruit and making soup.  The simplicity of nourishment.  Overall we felt the power of kindness and community that can easily be forgotten or taken for granted in our busy and overly digital world. The simple gifts of kindness, the offers of help, lifts to appointments, walking companions, sourcing of outfits for school plays and childcare are invaluable. They also made me feel alive and that I mattered to lots of people. The outpouring of love and the genuine, real conversations I have with people I’ve known for years and other strangers has been humbling and a joy. I was never one for small talk.  I favour real conversations.

I have been toying with writing this post for a while. A sort of wide scale thank you note to everyone who has held us in their thoughts, sent us messages of encouragement, made us laugh and smile and held our hands through this unplanned and daunting journey. 

I am a strong person and I still favour helping over being helped. I am delighted that so many people ignored this and just stepped in. For the last couple of years we have donated to charity rather than sending Christmas cards. I also commit to phoning people who live further afield and have a proper chat with them, reconnecting rather than sending a card year after year. This year I haven’t phoned very many people. It is not because I haven’t got the energy, but it’s because I am more connected with the people that matter than ever before. This is one of cancer’s blessings. It cuts out the crap and brings families and friends closer together. Or it certainly has in my case.

This time of the year seems like a good time to celebrate and think about the importance of community and kindness. I’ve alway been a fan of and contributor to both. It matters and it makes a difference. Merry Christmas and thank you.

“It’s not how much we you do, but how much love we put into what you do that counts”

Mother Teresa

I am not religious in the traditional way and yet despite Mother Teresa’s catholic origins her words resonate with my beliefs. Her desire to put common humanity above religious divisions is something we should all strive to do. I do believe in spirituality and the sense of connection to something bigger than ourselves. Sometimes that belief and way of being is the only thing that keeps me going. We all need to look beyond ourselves.

24th December 2019

What does ‘stable’ really mean?

Heavy duty adult training wheels 18 stone

Yesterday I finally got my CT results from 3 weeks ago.  They are stable. But what does that actually mean? I don’t know how to feel about that word. It doesn’t excite or sadden me. It’s neutral. I feel like I’m in a holding circle outside Heathrow, not able to land or fly off. 

‘Stable’ definitely doesn’t ooze positivity. A political situation in a far off land that becomes ‘stable’ doesn’t have you rushing to book your next holiday there. Stable pension funds or economies are safer, but not a cause for celebration or a spend up. Riding a bike with stabilisers is an interim phase between falling off and riding properly.

I guess I’d rather not be falling off. 

Pretty much every appointment I’ve had in the last 20 months has been bad news or unfolding bad news or seemingly positive news that belied my clinical representation or turned out to be bad news due to a scanning error. 

Let’s just say I brace myself for bad news. I prepare for it, I seek to interrogate and understand it. I then accept it and move on to forming or executing the next plan of attack. I’m a problem solver by nature and profession. I’m an action junkie. I don’t know how to be around stable? I’m not organising a party and I’m not researching alternatives  or mobilising the NHS. It feels indifferent and passive and I don’t like it! 

My RECIST (response evaluation criteria in solid tumours) report shows a 1mm reduction in the size of my target lesion (the largest lymph node in my contralateral axilla). On 12th Sept scan it measured 19mm and on 19th Nov it measures 18mm. It’s going in the right direction, not enough for partial response (PR) to be classified, but not enough for progressive disease (PD) either. But here is the rub. That same 12 Sept scan was originally measured and reported by my previous hospital and the lymph node in question was reported as 16mm. 

Same raw data, different reporter. 

So based on the original report I have a 2mm growth.  In addition the same node was reported twice in the summer as being complete response to treatment (CR) and it measured 0mm! Yet I could still feel it and it felt like it was growing (and it was). See why I don’t trust scans! 

Now let’s go back to clinical evidence – or in lay terms – eyes and fingers. The lymph node in question feels smaller than it was when I started this second trial (that’s good right?), but it also feels like it has coalesced with the other enlarged lymph nodes to form a skinnier (technical term) yet longer mass.  So what are they actually measuring? 

On top of all of this my skin metastasises are growing. I have 3 reasonably significant ones and two tiny ones that I expect no one will acknowledge, but I know they feel exactly how the others did at the start. The biggest skin met has been biopsied and is definitely triple negative breast cancer cells. And yet I had a private ultrasound of my chest wall last week and the monographer said ‘there is nothing there’! I had to stop the sonographer and say I presume you mean on the scan as you can plainly see and feel them on my chest!  Of course that’s what she meant, but it made me feel like I was making it up! Even my 7 year old says ‘Mummy is that another cancer lump?’ And ‘that one is getting bigger isn’t it Mummy?’ How do I deal with ‘stable’ in this context? Even my daughter wants to know when I will switch to a treatment that actually works! 

She doesn’t get ‘stable’ either. 

A loved one in intensive care who is reported as stable doesn’t fill you with joy. You take a breath, you might be relieved, but you aren’t out of the woods. I guess a terminal cancer patient is never ‘out of the woods’, so maybe ‘stable’ is as good as it gets. I’m restless, I’m impatient, I get it.

In my case ‘stable’ is pretty hopeful. Dying’s on hold for a bit longer. Christmas can be ‘stable’ not disrupted by new treatment or adverse reactions. 

It’s still too passive for me. But I think that’s my nature. I perhaps need to turn off my ‘high alert’ button and give my para sympathetic system a rest over Christmas. Changing treatment over the festive period is never ideal (I did that last Christmas), so perhaps I need to take that very deep breath and try and ignore my sixth sense for another cycle of this wretched chemo. 

Right time to start taking those horse tablets. 

11th December 2019

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

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.