My experience: Kathy Sheridan’s cancer diary
Diagnosed with breast cancer in January 2013, Kathy Sheridan describes a rollercoaster year of treatment and recovery
Photograph: Brenda Fitzsimons
“It’s not a great three-part TV drama full of moments. It’s a long grind, like a slow car crash that will last five years and then, hopefully, we’ll get out,”
– Adrian Edmondson, Jennifer Saunders’ s husband
Oncology Day Ward, Tallaght
Assume nothing. Nothing. No, Mrs Glib, you can’t possibly know 450 women in Waterford who had the very same thing as Katty here and who are all flyin’ now.
Katty sucks on a chunk of pineapple – it’s supposed to kill the foul, metallic taste for a few minutes – and wiggles her weirdly numb toes. Is that another toenail whispering sayonara ?
A tentative rub of her left eyebrow . . . hmmm, that’s gone too. Meanwhile, there’s eye-liner leeching into her lashless, watery eyes, making them redder than a hellhound’s.
Her chemo-addled brain is throwing up random thoughts: Why is there blood in my nose? Why does no-one ever mention the usefulnesss of eyebrows and lashes and nosehairs for keeping stuff from getting in your eyes and nose. Why won’t the little wig flaps in front of my ears lie flat? Will I ever be able to taste a cup of tea again? It’ll taste like wheel nuts, but I really want one of Phyllis’s massive scones.
Would Phyllis have a knife sharp enough to glide between Mrs Glib’s ribs . . . ?
Such stabbings are rare, which is surprising. Perhaps it’s because cancer makes you kinder. Or because you lack the energy. Or because chemobrain renders you incapable of remembering who the stabee is.
A lifetime ago, four months actually, you were sniping at politicians, yelling at fatheads in BMWs and infuriating editors by writing way-too-long articles. Six days before Christmas, you hurtled into a Tesco car park to buy a tree, clocked the Breastcheck mobile unit and – bizarre but true – suddenly remembered you had an appointment right then for a routine mammogram.
Breastcheck clinic, Dublin 4
Around 25 of us sit waiting for a mammogram review. The silence is charged. A woman is reading OK! upside down. Another is knitting, clinky-clank. A 30-something exhales angrily, scrolling through her iPhone. Dear faces swim across consciousness – daughters, sisters, brothers, nieces, nephews, beloved friends . . .You didn’t tell them you were coming here; they may kill you.
In the lobby, the driver/companions are staring into space, reading fitfully, trudging off for coffee. Is it worse for those who will be the first to bear the burden of your news?
Do they know how lucky they are, as their women reappear, pulling on coats with a “Phew, find me a decent coffee”? The seismic plates of their worlds had shuddered, then settled again.
A handful of us remain.
The gears shift noticeably as a soft-spoken nurse takes us separately on a melancholic little journey, each new step a subtle warning. On the ultrasound screen, the dark expanse is obvious even to me. The biopsy test will take a week, but no-one denies there is something there.
Nurse Ruth Conboy shepherds me into a calm, pretty room and brings tea. I’m dry-eyed, forever Pollyanna, confident I’ll be the one to dodge the chemo. But I want my husband. He’s been sitting out there for a long time. Long enough for him to guess that the axis of our little world is shifting.
It takes a year – only last week – to recover my fact-seeking radar and Google breast cancer.
I count 15 types to start with, and that’s before we get to grades and stages. The grade of cancer (an indicator of the level of aggression and how quickly it might spread) is very different to the stage (an indicator of the size, spread and so on). But each will determine the chemotherapy drugs (there are more than 50), the combination and dosage. Sometimes just one is used, more often a combination of two, three or more. Some people escape it altogether, some have four cycles or six, or multiples of that.
Many include Docetaxel, that most aggressive, crude and efficient of cancer drugs. The effect is cumulative, therefore the number of cycles, dosage and combinations make a difference, physically and psychologically.
So save your fables of flyin’ women who have the very same thing, Mrs Smug, unless of course they’re actually flyin’. For real. Without wings.
I never wondered why me. Because, duh, why wouldn’t it be me? (That works for your lottery odds too). I thought a) how/when will I tell the dear ones, and b) I will die if my hair falls out.
Perspective is easily found. The High Court judgment in Marie Fleming’s right-to-die case is among my assignments this week. Twenty-five years of terrible suffering culminating in paralysis and a plea to be allowed to die, while watching your children spiral into a state of permanent grief. Versus a few months of chemo?
There is no big desk between the breast specialist, Ruth Prichard, and me. She is sensitive, straight, unpatronising, meticulous. She even draws a picture.
All I hear is “invasive”; “Grade 3” and “chemotherapy”. The last one stings (my hair, my hair . . . ). Surgery dates are discussed for a week to 10 days hence, depending on beds. I sheepishly mention health insurance. That gets me a date in St Vincent’s Private about three days earlier.
Everything to this point has been on the public health service, free, a dreamy vision of what the whole service might be in a parallel universe: swift, caring, efficient, sensitive. Faultless. As is the surgery. I wake up in a private room way above my insurance grade, city lights twinkling, convinced I’m in Paris. Nice drugs, doc. I’m thinking of doing a little happy-dance around the bed when my dear ones arrive.
Months later, I see the gone-viral video of Deborah Cohan, a Californian doctor facing a double mastectomy, who leads the surgical team in a dance round the theatre to Beyoncé’s Get me Bodied . The online plaudits are almost unanimous: “Awesome”, “spirited, “brave” and of course, “inspiring”.
It unsettles me. If a middle-aged, male doctor does a rumba round an operating theatre before his bilateral orchiectomy, should men find that inspiring? Or plain weird? Each individual has to do whatever it takes to stay sane, but if the primary purpose is to inspire other women, where is it taking us?
In the autumn, when Majella O’Donnell, her radiant, pre-chemo face still graced with lashes and brows, goes on the Late Late Show to have her head shaved – and raise a staggering €600,000 for the Irish Cancer Society – my hair is still awol. But much more annoyingly, so are my lashes and brows and normal skintone.
Plus, I’ve just had my tear ducts agonisingly and expensively poked at with bendy needles to stop the weeping. (It fails. The eyes eventually fix themselves as will almost everything else).
I peer at the screen and Majella’s nervous face and respectfully wonder about the Late Late ’s message. No, I’m not feeling positive right now – so sue me.
In the cancer context, someone described hair-loss as “the outward disrobing of the person you saw as you”, an external confirmation that things may never be quite the same again.
I’ve forgotten almost everything about this part-year, but not the first visit to the wig shop, the hair roughly chopped then pulled into a hairnet before the laying on of ratty hairpieces.
Driver-sister and I assure each other this is just a fun day out, sure isn’t a good wig something we always wanted, really. Human or synthetic? Long or short? Curly or straight? If only your own damn hair was that malleable. But as the hairnet goes on, I catch a glimpse of her in the mirror; she looks stricken.
In a hospital cafe, I sit beside a 30-something Munster woman. The giveaway is the headscarf and the sores around her mouth. I ask lightly how she’s doing. “Ah sure I’m terminal”, she says. “They’re saying a few months. The older kids are kinda prepared but the four-year-old, like . . . well, two years ago, I had great hair, down to my waist, and I know it’s mad, but what really upsets me is that she’ll have no memory of me looking like that – what I see as me – except what she sees in photographs.”
That theme of loss, represented by hair, is recurring. An academic having her first treatment chats happily until someone admires her short, chestnut bob. At that, she wells up: she’s been having her lovely long mane cut in phases to ease the transition.
Many people don’t know that Tallaght’s oncology day ward offers hope for hair. The cold cap treatment is part of the service.
On infusion days, you wet the hair, pull on a jockey-style cap, secure it under your chin, then plug the thing into a freezer. Essentially, the ice around the follicles acts like a missile defence system against chemo marauders.
Women are having their chemo here to avail of it. It is neither pretty nor comfortable but it works well for several women and at least one man in my sight-line. But not for me, damn it. I do retain a tiny fringe, though, which is handy.
Major apologies to everyone I ever sniggered at who was, or is, a martyr to heartburn. Regard yourselves as vindicated. Four scorching, sleepless nights and days are also a powerful early lesson in the No Medals for Suffering mantra preached by the oncology nurses. Being a newbie, with blinkers, I presume it’s something that must be borne. Finally, driver-sister dials the ward. A prescription is faxed to the pharmacy and I am scorch-free within the hour.
Wednesday is my infusion day because Dr Janice Walshe is there. Most people end up in thrall to their oncologist – the dependency is almost baby-like – but Janice Walshe is a find.
Her communication skills are peerless, she gets her own coffee, wears great dresses, is appropriately cheerful, holistic in outlook, and never, ever forgets.
Cancer treatment has many “tails”, big and small, which must be monitored but the frequent blood tests may also highlight odd patterns that reveal unrelated, even pre-existing conditions . She chases them up like a forensic sleuth.
Contrary to expectation, the oncology day ward is a rather comforting place. Occasionally, someone has a spectacular reaction to a drug. Or an elderly man, infuriated by machines pinging and life in general, croaks out an angry “F**king shoot me NOW!”.
The more usual drama is the struggle to insert a cannula into collapsing veins. That woman up to her right elbow in a basin of warm water, trying to coax the veins, is usually me. Eventually I get a port inserted beneath the skin below the neck, an alien-looking thing but one that triggers high-fives on treatment days. It save a lot of time and ouches.
The nurses – with staff numbers falling, working at an obviously more frenetic pace as months go by – manage to remain humorous and professional even as patient numbers expand in a finite space.
After the bloods drama, comes the wait for results. If there is infection (to which chemo patients are susceptible), there will be no infusions. Everything about that is painful. No-one wants to go there.
Meanwhile, Phyllis brings tea and toast and people confide their troubles. “I said to the daughter ‘I have to sit down to peel the potatoes’ and she shouted ‘who needs to sit down to peel potatoes?’ ,” sighs a woman.
Finally, I’m hooked up to the drip and a trio of drugs. I’m always conscious of the Docetaxel, the liquid poison seeping slowly into the vein, bent on mass destruction. By 3pm, or 4pm or 5pm, Driver-Sister has negotiated the most badly-designed car-park in history and paid the scandalous €2.50 an hour.
Then I’m home to doze to the fire and to binge on Harry’s Law . Kathy Bates never makes you feel bad about yourself.
The time is filled with appointments, medicines to remember, signs to monitor, lessons in self-injection (didn’t see that coming either). The first thing they give you going into chemo is a thermometer. It’s not for show.
By now, I’m a day ward veteran, encouraging the newbies, hearing my old Pollyanna voice in their plans to get superfit, to devour dense and worthy books, to exist on organic broccoli, to continue minding the seven grandchildren. Some might even manage it.
Most can recite in great technical detail what ails them. Some record every tiny detail in a little notebook. My blinkers are so well established, I can’t even recall what kind of cancer I had. Ruth Prichard whisked it away months ago; it’s gone. Janice Walshe is ensuring it doesn’t come back. That’s my mantra.
But one thing I know: the C-word still packs a powerful punch. Though the survival rate for breast cancer is more than 80 per cent, in our house it translates into a blizzard of flowers and nourishing dinners left discreetly on the doorstep, warm brown bread and lemon drizzle cake, Jo Malone candles and perfumes and cosmetics chosen with infinite sensitivity, great jazzy scarves and little white beanies, parcels of funny, random things made of ginger (for nausea), chocolate, wit and love. And a tsunami of texts, cards, handwritten notes and Mass bouquets (anyone kind enough to send an appeal into the universe for me and pay good money for it is my friend).
All for me.
And zilch for my buddy who has a horrible, chronic affliction that happens not to be called cancer. She may be a tad bitter, but hey, I tell her, you have great hair.
This month, match-sister and I get the regular call to a pre-rugby lunch in Limerick with a bunch of Munster players’ parents. Struggling out of bed, I get a preview of what extreme old age must be like and a glance in the mirror suggests strong kinship with the red-eyed iguana. Wig and game-face on, I shuffle into the restaurant and find it’s all about me.
There are cards and meaningful hugs and demands to put your wallet back in your pocket and a presentation of flowers by Marie O’Callaghan, Donncha’s mother. Match-sister notes it’s the first time she has seen me cry.
Maybe it’s the culmination of something powerful that has been building for months; this universal galvanising of love, warmth and generosity that is the beauteous, bounteous best of us, the bit that is evident in the sustained, selfless, under-the-radar calls from people with busy lives, to Pat, Sarah and Mary Kate, “minding” them for me. But of course it’s not universal. And the handful who let you down are all the more wounding.
A month of recurring infections and bed-days. Dear ones come and lie on the bed and tell me family secrets. It’s almost worth the horrors.
Jenny Reilly, my beautiful niece, is getting married to Quito. I’ve been living on Chicken Bovril and Robinson’s lemon drink (they nearly get past the metallic taste) and Dominic West is on the guestlist. A match made in heaven.
The Chicken Bovril “diet” means my new blue silk dress – hah! – has to come down a size or two.
No sooner done, alas, than I get an irrational craving for thick white sauce. Gallons of it. Followed by fat curries. It all tastes like wheel nuts but I’m desperate to taste anything. Come the wedding day and Dominic, the blue dress refuses to zip up.
What a perfect day I’m thinking at around 11pm, as the bridal couple dance a funny flamenco. My ankles are elephantine. That’s new.
We hide away for a week in Martyn and Jean Turner’s wisteria-covered house near the Canal de Midi. Several très amusant acquaintances are lurking within 30km, inviting us to come sip and whinge, but since no humans of Irish extraction are allowed to look at me, husband and daughter must make their own fun.
On the return, it’s just Sarah and me on the 90-minute drive back to Carcasonne airport. I regally insist she takes the Montpellier direction. She protests politely but obeys The Patient. Eighty minutes later, I’m having second thoughts (it’s called chemobrain, child of grace) and we’re doing 165kmph in the other direction.
As she sprints ahead into the terminal with 10 minutes to take-off, she yells : “Take off your scarf, they might be nicer to us”. But . . . but, you swore yesterday my hair was great, I wheeze . . .“I lied,” she shouts.
The Ryanair staff practically carry us to the plane. The new-minted Michael O’Leary would be proud.
“The radiotherapy will be an ’oliday compared to the chemotherapy”, says the happy, Middle Eastern radiologist. “You will be coming for nearly seven weeks.” Could we make it a Monday, I wonder. Turns out it’s every day for nearly seven weeks. Who knew ? And he was right.
My day ward adventures aren’t over; the Herceptin infusions – a true miracle drug – will continue every three weeks ’til March. The Anastrozole cancer pills – another miracle – will be a daily habit for years. So when the first month’s prescription comes to €80, it raises alarm bells – nearly €1,000 a year for a generic drug?
Other pharmacies are better: €56, down to €44 (Boots, Liffey Valley). But a swift email reveals that two Newry pharmacies sell it for £9.60 and £5. We cross the border and get five months’ supply for about €30. The Guardian mentions that it sells in England for £1.99.
There are two phases to cancer treatment, says psychotherapist, Suzy McMullan at Arc, the voluntary cancer support organisation.
The first is the physical journey, which is all mapped out. You just get that train, as my friend Patsey describes it.
The second begins when the main treatment is over and suddenly, there’s no map. This may be when I find myself sobbing in a Dundrum cinema for the Somali pirate who kidnapped nice Tom Hanks in Captain Philips and certain children laugh and I get unreasonably cross. Psychologically, it seems, cancer and I have unfinished business.
The blinkers were firmly on while I was being cut open, infused with powerful, poisonous chemicals, subjected to dangerous rays and tottering through the vicissitudes that ordinary life continued to throw up. They had to come off sometime.
So no, Mrs Smug, Katty is not that invincible, robust countrywoman of her imagining, but she’ll be grand. Suzy and I talk in Arc’s lovely, calm house; normality is restored. (And children, that Somali actor has won a slew of awards. Hah! Who’s crying now?)
My hair texture resembles the dog’s but it’s properly back. The lashes are tiny but definitely present. The brows are annoyingly sparse but the nails are looking like their old selves. I nod off at odd hours but my energy is returning in waves. Match-sister makes Christmas dinner. There are upsides to this thing.
It’s almost over. Driver-sister and I have seen all the seasons on the road to Tallaght. We started in snow and finish in springtime and – to these (still slightly watery) overwhelmingly grateful eyes – even the raging storms are beautiful.
Back at work, my first assignment, by some odd synchronicity, is to interview Corrinna Moore, the late Marie Fleming’s remarkable daughter. Perspective is ever near, if you know where to look.