Why you don’t talk about chemo

The side effects of chemotherapy have a lot in common with Fight Club – the first rule is that you don’t talk about them. Nobody undergoes chemo casually and the alternatives tend to be grim, plus you rarely embark on it without encountering others in a similar situation. You would think that would lead to greater openness, but the reverse can be the case. You really don’t want to make someone a few steps behind you on the path more apprehensive than they already are.

Also, this is not the refined, lying faintly and beautifully on a chaise longue, kind of being ill. It is undignified and messy. It involves long periods crouched over the toilet in considerable pain, followed by shivering wipeouts that reduce you to the nursery. After one of my sessions, all I want is for my hubby to tuck me in. Literally. I really feel for people who don’t have that luxury.

When the fatigue strikes, it can be very sudden and completely debilitating. You get very little warning; one moment you’re pottering around and thinking of going for a walk, the next you are groaning under the duvet. Ignore the signs at your peril. In my experience, they consist of a cough, shivering and the strange sensation of ants crawling all over you, a process known medically as formication (stet) and linked to damage to your nerve endings. You suddenly become aware that you can’t trust your physical sensations to give you reliable and consistent information. It’s very – well, unnerving. For once the term is exactly right.

I have suffered from digestive problems and restricted my diet for years, so when the squits began to hit I assumed that I could cut out yet more triggers and control them. But it seems more complicated than that. There is definitely an element of quantity as well as quality. My digestive system is too damaged right now to tolerate more than very modest and carefully spaced amounts of food. Sometimes I have to stop eating halfway through something, knowing that even one more bite will have consequences.

You can quickly slip into a state of mind where lack of energy, your rather odd appearance and the ever-present risk of needing to dash to the bathroom make you reluctant to leave the house. I have become quite reliant on the nice cafe and French bakery five minutes walk away. Not quite a place where everybody knows your name, but they are used to me now and accept my oddities without comment. And when nothing hits the spot except Grandad’s sausage on ciabatta with a lot of ketchup, Corner and Bloom deliver. They also make an excellent oat milk flat white.

I hope this won’t last forever. Of course I do. This week marks the last of my really heavy-duty treatments and most people tolerate my next one rather better. We shall wait and see. And I still struggle daily with the omarta – how much should I really talk about it? The truth about chemotherapy side effects really does seem to be one of the last frontiers, and for all the chat in theory about people wanting raw and honest testimony, I think there are probably good reasons for that.

Chemo in a heatwave, and the lure of Lyonnesse

Ancient signpost stone, North Cornwall

I don’t think many people have felt all right this week, to be honest. Intense heat, unutterably ghastly politics (both UK and US), disturbed sleeping patterns, and an overall feeling of deep pessimism bordering on terror when one considers the future…..nope, being not all right seems a perfectly rational reaction to be honest.

I tend to forget I’m carrying extra loads as well, both physical and mental. I keep coming across stories like the experience of the 18C novelist Fanny Burney, who had a double mastectomy without anaesthetic and seemed apologetic that the experience still traumatised her years later. But “whataboutery” only helps up to a point….if you’re tired, hot and miserable no use beating yourself up about it, it’s just reality. And after several days of overwhelming weariness and cancelling everything, I think I’m beginning to emerge from the dark tunnel. At least I’m still here.

It probably didn’t help to read about Thomas Hardy. I’ve had Elizabeth Lowry’s new novel, The Chosen on my pile for a few weeks now. It’s a sombre study of the two weeks following the death of Emma, Hardy’s first wife. It was a long marriage that began wildly romantically with two not-quite-young people falling head over heels in love in the gorgeous wildness of North Cornwall, and ended with them barely speaking to one another. Yet as soon as she died, he began to pour out some of the most sublime poetry in the English language in her memory, and his grief was inconsolable. His second wife (who had been his mistress for years before Emma’s death) never quite forgave him for that. You can see her point of view.

We tend to talk about MeToo and the difficulty of enjoying the creative work of a Kevin Spacey or a Woody Allen as if it’s a recent phenomenon, but there’s nothing new about creative people behaving like total shits, particularly where the faithful women in their lives are concerned. Dickens blamed his unfortunate wife, the mother of nine children, very publicly for his own infidelity, which of course he concealed while turning almost the entire family against her. And it’s with a certain queasiness that I wallow in Hardy’s remorse by enjoying (if that is the right word) his haunting songs of mourning to the wife he emotionally abused. One thing is certain, nobody ever did regret and longing better than Hardy.

I haven’t been able to face Tess or Jude the Obscure since I read them as a teenager – I was just too angry with Angel Clare. Hardy writes so well about a man who idealises a woman and then can’t bear the flawed reality. Read about him and Emma and you’ll understand why. And Clare Tomalin’s wonderful biography of him, The Time Torn Man, forensically analyses Hardy’s demons which led him to punish his characters in the name of a cruel Fate when in fact he’d ended his own life in comfort, adored by many. Class, and the feeling of never quite fitting in anywhere because of his humble origins, had a lot to do with it.

Or maybe he was just a miserable old git.

Anyway, I’m starting to feel better now. I think maybe one of the things that doomed the troubled Hardy/Gifford marriage was that he was under the impression that he’d fallen in love with Emma when in fact he’d fallen in love with Cornwall. And that’s something I can certainly relate to.

When I set out for Lyonnesse,
A hundred miles away,
The rime was on the spray,
And starlight lit my lonesomeness
When I set out for Lyonnesse
A hundred miles away.

What would bechance at Lyonnesse
While I should sojourn there
No prophet durst declare,
Nor did the wisest wizard guess
What would bechance at Lyonnesse
While I should sojourn there.

When I came back from Lyonnesse
With magic in my eyes,
All marked with mute surmise
My radiance rare and fathomless,
When I came back from Lyonnesse
With magic in my eyes!

Fallout

My second chemo treatment is scheduled tomorrow and it’s natural to feel apprehensive, though the excellent staff do all they can to make it less daunting and unpleasant. It’s not so much the treatment itself that worries me as some of the side effects. But the one I feared most is already happening. On Wednesday evening my hair started falling out, big time. It was a surreal experience to watch Johnson’s authority collapse at the same time. I now look different, a bit odd, but I’m not completely bald – yet.

I’m cautiously optimistic that I’ll be able to manage the digestive problems this time around by fasting some of the time and avoiding lactose completely. We’ll see.

My mood is reasonably positive, given everything that is going on. I regard any day when I wake up not feeling awful as a gift – and most fall into that category. I’ve discovered Maggies, the wonderful cancer support centre just over the road from the Christie. It is a beautiful place, very peaceful and welcoming. There is a sense of not having to explain anything, just be yourself. I’ve been reading Between Two Kingdoms, Suleika Jaouad’s account of her long battle with leukaemia (she was diagnosed at the age of 22), and while her cancer has been far more serious than mine, there are certain experiences I can relate to. One of them is the possibility that your most important relationships become the ones with your cohort of fellow patients.

Jaoad’s experience was more intense than mine is likely to be; she had multiple in-patient stays over a period of four years, sometimes for weeks at a time. She was also dealing with the specific emotional challenges of her life being put on hold at a time when most young adults’ lives are beginning. Her relationship with her boyfriend is described very honestly. As well as being faced with a partner whose survival rate was 35% at one stage, he had to come to terms with the fact that her treatment would make her sterile, and they were unable to marry because under the US health care system she couldn’t risk losing her father’s insurance cover. (And that was just the start of it. You’ll have to read the book).

What Maggies has given me is a space where I am normal, even in my present state, and I don’t have to navigate the reactions of others. So far, I’ve met with nothing but kindness but already I’ve noticed that strangers are anxious and solicitous around me. Most people don’t realise that chemo is often used to prevent future relapse; they assume that someone with visible signs of the treatment is gravely ill, right now, and possibly terminally. And they treat you accordingly. It’s a tricky thing to navigate.

I joined two activities at Maggies. The first was a session on make up and skin care, and gave my confidence a boost and an opportunity to unwind in a relaxed, girly activity. I also tried out a creative writing group, which I think will become quite important to me. Both were a step forward; it would be so easy just to hide away.

I wrote three poems as a result of the writing group; it’s good for me to try my work out in front of a real (as opposed to digital) audience. I think this one captures where I am right now, and the strange comfort of being in the bubble of the patient community:

SAFE SPACE

In the streets around Christies
solid, red-brick villas, swagged with Arts and Crafts motifs
are the soul of discretion,
they’ve seen it all before,
the balded heads, the tears
the jostling for a parking space
even the blokes in the high-vis vests
rebuilding the Paterson Labs
don’t bat an eyelid now, if they did ever.

It’s restful after constant kindness,
which needs to be carried, like everything else,
the questions hanging in the air
the times when you’re too tired to share.

In the streets around Christies
you walk in a bubble of your own normality
and the tall, leaded windows give nothing away
a kind of cordon sanitaire 
it’s peaceful there.

Living a very quiet life

I realise it’s been pretty quiet around here lately and there’s a reason for that. I’m having chemotherapy treatment and it’s pulling me apart right now. It’s really hard to have surgery that cures you, at least for the time being, and then start a round of treatment that makes you feel even sicker just when you were starting to feel well again, and do it simply on a percentage chance that it will prevent relapse. And I thought long and hard before consenting to it. In the end the thing that swayed me was signing up for a medical study that would help to make these decisions easier for people with breast cancer in the future.

Two things have really struck me over the past week, and they are connected – my complete lack of energy, and my almost complete desire to be left alone. I have set up a WhatsApp group for friends and other supporters, and I’m truly grateful for the loving support that’s flowing towards me through that right now. Tried a Zoom call with close family and only lasted a few minutes before anxiety forced me back to bed. Also for the kindness of neighbours – flowers, home-grown strawberries, all that. I am not unsociable on principle. But I am probably on the autistic spectrum, and interacting with others is never cost-free for me. Right now I’m sleeping 12-15 hours out of 24. Not just lying in bed, that’s extra. Sleeping deeply.

I’ve never found calm, silence and space more necessary than I do right now. It’s not about going on a retreat or taking time out. It’s sheer survival. I do have a partner taking up the slack and I can’t begin to express how grateful I am for that.

Physically I don’t look all that bad. I still have my hair. My gums are bleeding and my throat is permanently sore so eating is hard. I haven’t left the house in days because I need to be near a bathroom at all times, plus my immune system is weakened and there is COVID out there. Every food intolerance I have ever had is magnified right now and the usual medications I rely on to control them are severely restricted. This means I’m on a dairy-free 500-1000c/daily diet. If I don’t play by the rules, I get such dreadful IBS symptoms that I can’t eat or drink anything at all. I have always had problems with disordered eating. I use it to regulate my mood. Even a week ago, there were cream cakes in the fridge and I was ready to eat them and never mind the consequences. Not any more.

I don’t spend a lot of time wondering why this happened to me. I’ve had a lot of ill health in my life, both physical and mental, and none of it has stopped me having times of great joy and fulfilment as well. I also get the luxury of being sick in comfort, and many don’t. Mentally I’m quite alert and am managing to read some challenging stuff, which is good. Sometimes I knit for a while. I’m finding TV quite difficult right now, just too much sensory overload. Sometimes I lie for hours with my eyes closed, just thinking. Mostly of all the things I plan to do when life is a bit easier. I’m not trying to be useful at the moment, just avoid getting in anybody’s way. Despite everything, I’m not depressed. I’ve accepted what I can’t change at the moment and I’m leaving it alone. Trust me, I’ve been depressed, and it’s a lot, lot worse than this. I’m not existing, I’m living, just within very restricted parameters. However, they do still include hope, intellectual curiosity, and the ability to recieve love and appreciate beauty.

Subversive starter of school libraries

It all began around the year 2000, when both my children were in our local CofE primary. One of my friends was a qualified librarian, and she protested loudly at a Governors meeting when she heard that children who misbehaved were being sent to the school library as a punishment.

The inevitable happened, and she was roped into reviving the school’s neglected and outdated library, which many people were unaware even existed. We got chatting as we walked to school to collect our offspring. For various reasons I have never qualified as a librarian, but I have always been interested in children’s books, and I asked her (a) if I could get involved and (b) if there was a fiction section.

”Oh, you’d have to ask the Head,” she replied. So I did.

”Well, we couldn’t have story books,” the Head said, ”because the children would want to take them home.”

”Well, it is a library,” I pointed out.

”Yes, but we haven’t got the staff.”

I said I’d come in a couple of lunchtimes a week and the PTA gave me £400 to get started (they continued to be my stalwart supporters for the next 20 years). I hoped that we’d manage to recruit volunteers but that didn’t really happen, so I ended up going in more days than not. I found out all the sources of good children’s books, from charity shops to Book People deals, and received many donations. With the help of Christine, my professional librarian friend, I learned how to classify, catalogue and cover books. Over the years we expanded into a 3,000 volume library, and once Chris returned to paid employment it became a full-time job.

When the school became an Academy Trust on three different sites, I did the whole thing twice over again. One school had recently been in special measures, and the staff had hidden their entire library stock from a head teacher, now departed, who wanted to chuck it all out because everything was about computers these days. I managed to motivate the PTA to get hold of a room, get it renovated and stocked, and set up weekly library sessions for every class.

The third school was a new-build extension of the original one, and I vividly remember going in and working unpaid overtime covering books on the day of the Brexit vote because I wanted to be involved in doing something positive.

I stayed in post until my physical and mental health collapsed in 2017. I’ve written about all that previously on this blog. Since the next five years involved a hip replacement, a pandemic lockdown and a breast cancer diagnosis, I probably left at the right time.

And that is how I came to describe myself as a subversive starter of school libraries. But I think most librarians have a subversive streak. They see a side of people that is often hidden from the world at large. They are unsung heroes. In England now, people are flocking to libraries (the few public ones left) simply to keep warm and avoid being alone. It is not an ivory tower job. It’s a direct line to the heart of a community.

Meridian

Greenwich Park and the City of London from Royal Observatory (photo my own)

Back in January, while I was awaiting a diagnosis that turned out to be breast cancer, I gazed out over London from Parliament Hill on Hampstead Heath, and wrote a poem (too personal to share here, I feel) about the alienation I felt from even those most loved and closest to me as I faced an uncertain future.

A lot has happened since then – two lots of surgery, which seem to have been successful, and now I’m faced with the prospect of chemotherapy to stop it coming back. Is it worth going through a hellish few months for a 9% improvement in my survival prospects ten years down the line? You reach a point when, even though in theory you can withhold consent, the decision develops its own feeling of inevitability. I’ve been offered the choice of enrolling in a major study that will offer me the chance to make this decision easier for thousands of future patients, many of whom probably don’t need chemo. But to do that, I have to enter a randomised trial and accept that my own chance of being allocated to the group that does go through it, whether I need to or not, is around 70%.

I think it will help for me to know I’m doing something valuable and useful. It will make it easier to face the cancelled holidays, the side effects and the inevitable, public changes in my appearance. Please don’t call me brave. It just seems sensible.

All this brings me to a second London hill poem, the Antipodes of the one on Parliament Hill. Last week I visited Greenwich and saw that same panoramic view from the south. I was also struck forcibly by many beautiful but problematic emblems of English imperialism. I am English, I want to love my country without shame, but I understand how difficult that can be when some of its most attractive structures (both physical and political; the two are closely linked) are so contentious.

We all have to decide where we stand, which way we jump. We may get it right, we may not, and sometimes all you can do is record how the moment of choice felt, with all its ambiguity. That is what I was thinking about when I wrote this poem.

What confidence – presumption, even
to think you can order a planet like that
to set a standard, tell the world 
the measures it must follow

Centuries smooth the contours of war
The victors tell history, ordering others 
and making all seem natural

But victor and vanquished alike
are forged in new proximity
Up on this sacred hill of Empire,
there’s the sound of beats
the lingering aroma of weed
and a multicultural crowd enjoying
the rolling sward below

What do they think of all of this,
our planted certainty
that we have earned the right
to define everyone’s reality,
their own included?

Ah, but what a view,
a sight to make even a liberal like me,
say “Suck it up, we won,”
in half-conviction. 
The Enlightenment was not all bad,
What did the Georgians do for us?
Order, clarity, symmetry, pomp
are still seductive values.

Time demands decision, choice,
the occasional leap in the dark,
based on the worship of capricious deity
or evidence of progress,
which in itself is good, though sometimes
questionably financed.

So here I stand, right in the middle of 
the empire of my sureties,
one foot on either line of choice.
I’ve come thus far, I am content
to gaze, sun-warmed, on this great city,
thinking of the journey made so far,
the twists that obscure distance, shape the view,
It still looks pretty good to me.
I’ll question it afresh tomorrow.

Greenwich, 8.5.22

Standing on the Meridian

Viriditas

A Poem for Beltane

This morning, through my opened window
drifted woodsmoke on the wind,
like incense, augury of good
from someone burning last year’s wood
old tree-growth making way for new,
space opened up for air to flow
all that we purge and burn away
awakens beauty from decay.
I thought of all that, underground
brings nourishment and makes no sound.
the ever-knowing, constant flow
of messages from root to root,
such power in the motion slow
and steady that throbs underfoot.
that drives up every tender shoot.
 
When summer comes, I’ll lie again
upon the ground in grass and leaf
and watch light trickling through the green.
I’ll gaze at sky, feel earth beneath
and all of life afire between,
so vibrant, and so rarely seen.
I’ll think of all we fail to know
as we rush through our frantic days,
all things that soft in greenwoods grow,
and offer up my song of praise.
 

Threshold

Birmingham New Street Station may seem like an unlikely place to make a symbolic gesture, being almost totally devoid of romance, but railway terminals can evoke a response that is as much about memory and association as the sum of their parts. And there is something particularly special about a place that marks the transition point on a journey to somewhere you really long to be, that point when home is left behind and the destination, with all its hope of a different way of living, comes into view.

As someone who travels regularly from Stockport to Penzance, a place I long to live in permanently but probably never will, I have my own (rather expensive and materialistic) way of marking this moment, which I have decided to embrace in the spirit of mystery and symbolism rather than dismiss cynically as a smart retailer’s successful bid to part me from my money. We sometimes buy more than mere objects. Tread softly, for you tread on my dreams.

Two minutes on an escalator
takes me out of an inferno
of cramped platforms, heat and shoving crowds,
to an atrium flooded with natural light.
purgatorial, with Pret and Moleskine
prepping the pilgrim for Paradise,
by name of Bristol Temple Meads
and on to all points west.

The traveller may take an hour or more
to escape the gravitational field of home
For me this is the threshold,
and demands a gesture.

It isn’t about what I already carry,
but what I resolve to become,
It never seems pre-meditated,
yet I always know that I will turn
into the Moleskine shop
and pay a sum unjustified,
to replace the journal and sketchbook
that I chose to leave behind
because the wanderer travels light

I make my offering and rush to buy a plastic salad box,
anointed and restored to bliss
as surely as a pilgrim
trusted in an icon
or a shard of martyr’s bone.

Whistling Jacks

What are those flowers among the tall grass 

Magenta gladioli?

What more wonders will we find here?

They are whistling jacks, you say

We lie side by side on the sand,

Everything on land is two sizes smaller

than we’re used to,

like the train layout your dad made for you

when you were a little boy.

but the sky and the sea are vast

It feels like the end of the world as we know it,

beyond the last few rocks coughed out

at the tail end of England,

this turquoise water fringed with granite

and impossibly pale sand.

We have three days

We have forever

Unpolluted sunlight pricks our eyes

The colours fierce, so bright!

All this I hold now thirty years later

anchored by a luggage label,

I found it in a box, with postcards

and a declaration written on a paper napkin.

I was seeking out my summer clothes.

They seem a little musty, so I’ll hang them on the washing line

to dance in the Easter weekend breeze 

like the nodding heads

of whistling jacks.

How exposed we were,

with nothing more between us

and another continent of plans.

I wonder, were we happier?

Coming of Age in the shadow of war (and Robin Hood’s Bay)

The Offing, by Benjamin Myers, Bloomsbury,pbk 2019

Poster produced for British Railways (BR) to promote rail travel to the Yorkshire coast. The poster shows a view of Robin Hood’s Bay, which lies on the Yorkshire coast between Whitby and Scarborough. Artwork by Frank Sherwin. (Photo by SSPL/Getty Images)

The offing is a word for the place where the sea and sky meet. It also functions as a metaphor for a place of transition – between childhood and adulthood, war and peace, grief and hope, restriction and freedom.

Sixteen-year-old Robert Appleyard, destined to become a miner like his father and his father before him, isn’t quite ready to settle down to his appointed fate. He senses a world beyond the cramped horizons of the Durham village that has been his life so far, a desire made all the more urgent because of the war that has so recently ended.

He hits the road and fetches up in a Yorkshire village still reeling from collective grief and trauma. One thing he has never experienced is abundance. This is an exhausted country where food is rationed and even the horses look underfed.

One warm afternoon in early summer, he stumbles upon a ramshackle cottage and into a friendship that will change his life. Dulcie Piper couldn’t be more different from him; she is cosmopolitan, eccentric, shaped by a privilege that has given her an immense appetite for life and the means to pursue it. Her larder is filled with ageing pre-war wine and rich produce offered by locals, but the view of the sea from the meadow by her cottage is obscured by shrubs she refuses to have cut back and her locked artist’s studio suggests a past she can’t come to terms with.

An overnight stay becomes a life-changing summer. Robert helps around the house; she feeds him up physically and mentally, introducing him to a new world of poetry and literature, questioning the assumptions that have bounded his life. Gradually, in return, he does far more for her than a few odd jobs. He pierces to the grief that has placed Dulcie’s life into suspension and helps her to come up with a solution that will change them both.

Like JL Carr’s much loved novel A Month In The Country, this is a story of a shattered land rebuilding itself after a devastating war, of people wondering whether to embrace hope of a brighter, more equal future, or to despair of a better tomorrow after the ghastly false dawn of victory in 1918 led to even greater bloodshed 20 years later. Both use the rural East of Yorkshire as the background for a story of self-discovery set against a background of English people processing a time of huge change and dislocation.

People who grew up in the long, peaceful post-war period experienced both the foundation of international structures for the preservation of peace and unity, and the ever-present fear that a third war was immanent and un-survivable. As those institutions are tested to destruction, the spectre rises that they may be coming to the end of their life, and that the horror of world war is returning.

Benjamin Myers captures that time of grief, austerity and guarded hope, how people were torn between dwelling on the horrors of the very recent past and the elusive promise of a brighter future beyond the hardships of austerity. It can seem like a brief shining moment, a Camelot where, for once, a bright working-class child could aspire to a higher education and a literary career. For those of us who went to those new universities, as I did myself in 1978, it looked as if that would last forever. How wrong we were. Now that the twin spectres of total war and lethal social inequality have returned.

Dulcie’s life is a shout and an air-punch against civic and personal mediocrity. Her loathing of pebbledash and concrete can seem snobbish, but her social attitudes blast through the “people like us don’t do that” mentality that Robert has grown up with. She will teach him that living authentically and freely comes at enormous cost, but the alternatives are worse. Yes, she is larger than life – I can easily imagine her played by Maggie Smith or Judi Dench in a movie. And her unforced kindness, and the bucolic warmth of this quiet gem of a novel, is somewhat out-of-fashion. But no matter. We need that kind of hope and kindness in our lives. The alternative is collective suicide.

This book feels like sun on the skin and a sea breeze in the hair. It celebrates life in all its fullness and the need to hang onto the conviction that such things are possible. Yes, it shows us what we’ve lost – a countryside rich with wildlife, among other things. But we are architects of the future, no matter how helpless we may feel – and living out lives based on openness, generosity and hope has never been more essential.