Takeaway cups of tea, treatment plans and telling the children I have cancer

A week after my mammogram and ultrasound my surgeon confirms my breast cancer diagnosis, we discuss treatment plans and we tell the children.

Photo by Ceyda Çiftci on Unsplash

Tuesday 24 April 2018, Airedale Hospital, Steeton, West Yorkshire

‘I’m going to grab a cup of tea. Do you want one?’

It’s another Tuesday morning a week later, and we’re retracing our steps, leaving the Friends of Airedale café and light, airy out-patients waiting area behind us and glimpses of April-blue sky. We’re meeting Miss Murphy, my surgeon. The woman in charge of me and my cancer. Four of us squeeze into her consulting room. Me, Andy, Miss Murphy and Emma, the breast cancer nurse we met the week before. We quickly learn that Emma will accompany us to every appointment. An extra pair of eyes and ears, for our benefit, and no doubt for the medics too. A mediator, checker of information and understanding. Passer of tissues, patter of arms.

As Emma observes me, I observe Miss Murphy wondering how it is that some people just exude calm confidence. I suspect she’s a similar age to me and wonder if it’s the neat, dark navy skirt suit and heels. Maybe it’s the discrete make up and jewellery. Tidy dark brown shoulder length wavy hair. In another world I imagine us bumping into each other at a parents’ evening or at Tesco.

Months later she re-schedules my follow up surgery because on the date she suggests I have a ticket to see the ballet, Matthew Bourne’s Swan Lake at the Alhambra in Bradford. My first ever ballet. My first visit to the Bradford theatre in all its grandeur, and after months of treatment I really don’t want to miss it. It turns out that Miss Murphy is going to see the same ballet two nights after me, and she quickly, wordlessly finds another slot in her diary. Our lives strangely entwined in this office, and outside it. A reminder that within this vast county lives circle and overlap each other in all sorts of unexpected ways.

But I think I feel her invisible to the eye experience. I sense that she’s sat in that seat hundreds of times before, delivering the same, similar messages. But she says nothing of the people she’s treated before. At no point does her focus waver from me and neither does she shirk from the message she’s about to deliver.

‘The good news is that this is the most common breast cancer. And that means we know a lot about it and have a well-researched treatment programme with good outcomes.’

Moments earlier she tells me I have oestrogen positive ductal invasive breast cancer. That’s the first of two pieces of good/bad news today. The second is that at this stage my treatment plan will focus solely on the lump I found, but that she’ll keep a close eye on the other areas too, but for now they aren’t the main priority.

I sigh with thanks, ‘God, that’s a relief. Thank you.’ I can stop feeling guilty about lymph nodes for now and it feels like I’ve just been given a get out of jail card, but then she utters the word mastectomy. Clear and unambiguous. She maintains eye contact throughout, watching me as I scribble in my notebook.

‘I’ve pencilled you in for surgery on 9^th May, two weeks’ time.’

Pause.

‘You’ve pencilled me in already? God, that’s quick. I didn’t realise things would move that quickly.’

 I nod blinking, I’m on the cancer treadmill already.

‘But we do have a decision to make. Due to the size of the tumour, if I operate first, I will have to remove your right breast. You’ll have a mastectomy.’

Pause

‘However, there might be an option to start you on chemotherapy first. If that shrinks the tumour, we would potentially be looking at a lumpectomy rather than a mastectomy.’

Mastectomy?

I feel naïve, stupid. I remember taking the call when Ginny told me she’d been diagnosed with breast cancer four years earlier. Sitting in a café in Bournemouth doing some work, I’d allowed myself to feel smug. Look at me, look how we moved to the seaside, the children at school and here I am working in a café, drinking coffee I didn’t have to make myself. A Monday morning win if there ever was one, surely.

I remember trying to keep up as Ginny rattled off the treatment programme she was about to embark on, my notebook now full of strange half sentences, juxtaposed with my to-do list. She too said words like chemotherapy, lumpectomy. Radiotherapy.

I cried after that call, and right now I recall Ginny’s efficient, factual delivery. The lawyer in her surely, and not unlike Miss Murphy’s delivery. And in that moment, I see in an instant how utterly different it is being the one in the chair. The person being told they have cancer. And I know now that everything I thought I knew about having cancer meant nothing.

‘If you need to get rid of it, just do it.’ I say, swiping my right arm down in front of my chest. I don’t mind. Just cut it out, cut it off.’ Tight lipped, attempting to wrestle back control. My eyes flicker to Andy, seated to my left. My blind left eye makes it easier to block others out, I’ve been focusing solely on Miss Murphy.  

‘Ok, well, we have one more result to come through. That will tell us whether the tumour is Herceptin + and then we’ll make a decision. Can you come back on Friday? Emma will make you an appointment.’

What she says next is disputed. I’m adamant that she tells me treatment will be a slog. That it’ll be nine months of hard work, relentless, but that I’ll get through it. I’ll come out the other side. But no one else remembers these words. Five months later, in the aftermath of surgery, as she hands me over to the radiotherapy team in Leeds, I thank her and tell her how important these words were to me. She looks blank though when I mention ‘slog’, ‘nine months’ and ‘you’ll get through it.’ She smiles, pleased she could help but says she isn’t sure they’re her words. ‘Slog’ isn’t a word she’d normally use. But still, I thank her for the words she might not have said, because from that moment onwards they become my mantra and I tell myself they’ll be enough to get me through in one piece.

And so, this ’slog’ quickly becomes the 2018 breast cancer edition of ‘one day at a time’. The AA mantra that mum and dad drilled into us decades earlier when they were fighting a very different challenge.  

How do you tell your children that you have cancer?

The rest of the day disappears into a grey impenetrable mass. Brain fog swallows up the few words and thoughts circulating in my head, and I limit my messages to updating a friend in Ilkley, and Ginny. I ask her to tell Matthew, our brother, in Tokyo, Louise, our sister in Wales and Viv, our aunt, mum’s sister near Milton Keynes. Saving me the job, not just from finding the words, but from having to face the responses and questions, as kind and concerned as I know they will be.

We decide to tell the children though. It’s a calculated risk because it’s just two days before Saskia’s 9^th birthday, but we have our reasons, don’t we? It’s her first birthday in Ilkley and she has plans, or rather she has expectations. Firmly in her unicorn phase we need to buy a cake, some party food at the very least. Andy has already ordered balloons and bunting, and she’s invited a new friend over after school.

But the words breast cancer lodge in my head, eclipsing all birthday talk, threatening to burst out. I don’t think I can keep it under wraps at home at least for much longer. I fear my furrowed brow and distracted gaze will give me away or that I’ll just blurt it out and once I set off down this path, no one can move me. I bat away a concerned, ‘Are you sure you can’t wait to tell them until after Friday’s appointment, wait til after Saskia’s birthday?’ a friend asks. Looking back, she was right, we should have waited but don’t.

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‘FFS. You’re kidding me?’ Three pairs of blue eyes don’t quite catch mine and flicker across to Andy. Charlie, our ginger haired 14-year-old sits straight up in his chair, the words breast cancer bounce back off his upright body. Twelve-year-old Ollie, our middle child recently shorn of his big blonde curls all the better to fit under his Air Cadets beret avoids eye contact, looking down at his empty dinner plate instead. He listens in silence before asking if he can leave the table. Saskia shifts in her seat, her poker straight blond hair brushes her shoulders, hiding her face before she too disappears to her room.

Charlie stays and chats with us for a while longer, maybe feeling he can speak (and swear) a little more freely without his younger siblings next to him, before he too takes refuge in his shared bedroom, headphones on, possibly happy, for once, to have the excuse and distraction of homework.

‘Christ! What do you think? How do you think that went? Cup of tea or something stronger?’ I’d delivered the message, Andy next to me, channelling – I hope – calm efficient messaging à la Miss Murphy. Focusing on the facts, trying to hit a level of detail and empathy that would work for each of three children. Three children with their own personalities, and age differences. Suddenly the six-year age gap between Saskia and Charlie seems enormous and I remember how differently Ollie receives and processes difficult information.

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I feel foolish, naïve, for not having thought this through. I wanted them to know, not telling them just wasn’t an option. We’re open, honest, aren’t we and that’s the best thing, isn’t it?

I remember visiting mum in hospital when I was in my mid-teens. No one told me why she was there; I vaguely remember someone mentioning something to do with cysts, it definitely fell in the ‘women’s issues’ category of hospital stays. But I never knew what it was and remember how uncomfortable I felt.  How stupid I felt standing mute by her hospital bed. I had no words, no clue. Left out. Should I have known what was wrong with her?

I vowed never to leave my children in the dark in the same way, but as I deliver my messages, I wish I could hit rewind, take them back. My cancer, mum and dad’s deaths. Ginny’s cancer. Let’s move to Bournemouth, Ilkley. I see how hard it is to get it right and how you just don’t want the words to be out there, because then they’ll be real.

I realise we’ll need three separate communication strategies for each of the children, as well as for friends, family and colleagues for Andy. Still a relative newbie at work and about to embark on a huge project with colleagues who don’t know him or us. Not well enough to know his stress ticks and when to spot he’s struggling, reluctant like so many of us to ask for help. He has a heavy load to shoulder, looking after me, the children. Selling our Bournemouth house. Buying a home in Ilkley and it’s a weight he carries alone.

We leave the children a short while before checking in with them. Saskia is openly shocked, scared and worried about her birthday. This has completely ridden roughshod through her birthday plans. I feebly reassure her that cake, candles, presents and having a friend round will still happen.

‘Will mum die?’ she asks Andy the next morning while he’s brushing his teeth. Notebook and pen in hand she follows him around the house asking questions, ‘And will her hair fall out?’ She writes his answers in her notebook and repeats this over the next few days, her questions always aimed at Andy. The two boys are quieter though. I contact their schools to make sure that their teachers know what’s happening. I’m relieved to have their support and saddened when they reassure me that they’ve been in this position many times before with other students and their families. It is reassuring, that they know what they’re doing. It also momentarily punctures my self-absorbed state. I know there are thousands, millions of people out there who’ve been where I am now but that doesn’t compute. All my brain can cope with right now is that this is happening to us. To me.

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I try to suppress growing seeds of anger that this is happening. That not only do I have breast cancer, but that I’ll have to deal with it while living here, in this temporary home. This rented bungalow we know the owner wants to move back into soon, with its 1980s carpeted bathroom, dark kitchen and lino floor I just can’t get clean. Broken venetian blinds not quite covering the condensation covered windows in the boy’s shared bedroom. It’s someone else’s home and right now, it feels unloved. What’s the point of unpacking when we’re going to be moving soon, our naïve, ill placed thought process. Our belongings spread between unopened boxes in the garage, in a storage unit in Skipton. The bare minimum left in our house in Bournemouth in an attempt to show potential buyers the family home it used to be, could be. We focus instead on how quickly we can get out of the bungalow, rather than trying to turn it into our home.

Why couldn’t Viv and Jim, my uncle and aunt still live down the road in Menston, I think. Just a few miles away rather than several hours down the M1, ironically not far from where we lived during my teenage years.

I tell myself, torture myself that if Viv was still living up here, I’d have asked her to come with me to Airedale, to act as that surrogate mother, sister. A familiar voice of support, love, bringer of happy memories of large family gatherings, Christmases, summer holidays. I feel alone.

It’s told anyone listening that I wouldn’t have swapped the seaside for anywhere else in the country. I’d always hankered after a Yorkshire-stone home, but this wasn’t quite what I had in mind when I said yes to moving to Ilkley a little over six months earlier.

‘We’ll look after you, you know.’ Juliet tells me with a hug, a friend of just a few months. We bump into each other walking our dogs around the Tarn and word had got to her of my diagnosis via her daughter, a friend of Charlie’s. I’m pleased that he’s spoken to someone, and I’m pleased it’s Ella because I sense that she will be a good friend to him, and that Juliet will make sure she in turn is supported at home. Being a friend to someone going through this isn’t easy as an adult, I’m acutely aware it’s even harder for teenagers.

‘You’ll find food on your doorstep; you won’t need to ask. The Ilkley community will just swing into action.’ 

 ‘Thanks, it’s really hard but we’ll be fine’ I mumble, or something equally benign. The moor has given my brain space to empty itself.  The big sky and fresh air steadying and slowing my breathing. Concentrating on safely placing each foot in turn on uneven, rocky moorland paths allows my thoughts to rise and float into the sky. It leaves me lighter if disconnected from reality and I find the switch from this dreamland state to conversation with a real-life human being awkward.

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The business of cancer

By late Friday morning of the same week, I know that I’ll be starting chemotherapy in a fortnight’s time. My diary is now full of appointments – chemotherapy consent clinic, PICC line insertion, chemotherapy doctor, MRI scan and ultrasound clinic for a clip to be attached to my tumour. There’s a whole new vocabulary list to learn and I buy a clear plastic A4 wallet for my mounting pile of paperwork, appointment cards, guides and pamphlets on breast cancer and local support groups. I dig out my paper diary and buy a new pen.

I also decide it’s time to tell a few people. I need to start saying these words out loud. To roll them around my mouth, see what they sound like spoken aloud. Mum always used to tell us ‘Don’t give it oxygen’ but this, this feels like something I do need to give oxygen to.

Sitting under my duvet on my bed after lunch, knees bent, back propped up against pillows and cushions, I look from the window to my phone and back again. I should be sleeping, having my siesta. It’s a relic from my chronic fatigue days when I couldn’t get through the day without falling into a deep, unconscious sleep sometime in between lunch and school pick-up. It’s a hard habit to break, and one, especially now that I know what lies ahead, I’m glad to have in my life.

I’ve already thought about who I want to tell and start with six friends. Six women who cover school and university years to work and parenthood in Bath and Bournemouth. I know I’ve leaned on these women so much already and I feel guilty, acutely aware I’m about to dump on them again.

I start shaping the story on my phone, picturing each of them reading the message, thinking about how they’ll receive this news. I know some have their own experience of breast cancer, as daughters, cousins and friends of women who have trodden this path before me. I choose my words carefully, play around with them. I delete, swap, copy and paste until I’m happy. It’s not a quick process.

Hi there, I’m only sending this message to a few friends for the moment & I’m not quite sure where or how to start so I’m just going to plough ahead & hope you understand.

I found a lump in my right breast during the Easter holidays and following hospital appointments in the last few weeks have been diagnosed with breast cancer.  I have appointments with the oncologist & consent clinic next week and anticipate starting chemo the following week. [ ]

It has come as a shock to say the least & as C said: “FFS, you’re kidding me?” (He has a great grasp of the English language)! The kids have been great, lots of v direct questions from S, C worried but chatting & O is still processing & not wanting to talk about it yet. It’s a lot to take in, but the Ilkley massive is swinging into action so we won’t be short of help, support or meals. We are though in the midst of buying a house & will now have to move that along ASAP. The timing really sucks but we’ll just have to keep going.

I realise this is quite a piece of news to land on you without warning but there is no easy way & as the days go on it feels like I want to get the news out there, not least because it’ll become fairly apparent what with the chemo side effects. So, I’m sorry I’m messaging you with crap news, I’m ok in myself. It still feels a little surreal but it’s beginning to feel v real v soon. I’ll sign off now but thank you for wading through all of that & hope to catch up with each of you soon. Hx

I look at it as I would a piece of writing for a client and think, ‘Yep, that’ll do. It reads ok.’ But I don’t expect the calls to come in so quickly and I’m taken aback as I see Victoria’s name pop up on my phone screen. I thought I’d have some breathing space after hitting send, thinking they’d all be busy at work.

‘Oh lovey. I’m so sorry. I know you said there was a curve ball on the horizon, but this?’ We chat for half an hour. I try out my new script and we chat until it’s time to collect Saskia from school, ignoring the ping of messages and missed calls in the background.

‘Harriet...have just seen, am stunned, sad, will digest and call u (if ok?). Sending u lots of love xxxxx’

‘I can only imagine how you must be feeling right now.’

‘My God could more be thrown at you.’