8. The Helping Dog

I am cheered no end by the arrival of my sister and her friend, who have taken their van across the Channel to do a bit of East Sussex countryside breathing of their own. The friend runs a school that trains Helping Dogs for people with disabilities.

She has brought along one of her students, the aptly named Bravo.

From where I am sitting, Bravo looks ready to graduate. I wouldn't mind borrowing him for the remainder of 2014. Once I'm crippled by chemo, I'm sure I can make good use of a dog who can answer door bells and bring me the remote control (or even find it for me - anticipating Chemo Brain).

This particular Helping Dog looks promising in more ways than one. He owns the most glorious tail, which would do nicely as my very first wig. It's even got a side parting.

Who could resist my Cruella de Vil look?

Do the services of Helping Dogs stretch to hair replacement for soon-to-be-bald cancer patients?

Bravo, indeed.

7. Not just your common cold

This blog was going to be of the life-affirming, uplifting kind. Honestly, it was.

I have cancer stories in my head that may be difficult, they may even be of the kind that make you wipe away a tear. But the idea was that my stories will ultimately make you want to smile at life.

Owl’s stories, for starters. Rest assured, I will post them. Soon. (That’s a promise.) But right now, I just can’t smile.

I did, earlier today, sitting in the sun with my breakfast. I have escaped to the country for a few days. Yesterday I stretched out gloriously among the long waving grass, dispensing with my T shirt and flinging Brain Fluff Bra aside, looking up at the leisurely clouds and letting the sun and breeze caress my bloated scar. It may not sound like bliss (there is, after all, still the chest fluid to contend with, despite regular trips to the hospital to drain it - it's like having a sloshing hot water bottle strapped to my front). But it felt like bliss.

Then I went from contentment to terror in just a few short minutes.

It happened because of a book I was reading.

I still haven’t managed to read anything of substance. Novels are out. Short pieces in women’s magazines, perhaps, but no more than a quarter of a magazine at a time, and that’s on a good day.

But on the train yesterday I started reading my first “I’ve got cancer and here’s my story” kind of book, and I’ve been lapping it up. Every time I think I’d better stop (because do I really want to know the full extent of chemotherapy horror?) I am compelled to read just a few more pages. And then a few more.

It was my breast care nurse who mentioned the book a couple of days ago. “You’re writing a blog? I had another patient who wrote a blog, and it got turned into a book. It’s called The C-Word.”

So I googled it and ordered it (partly out of interest to see if I might recognise any of the hospital departments or staff).

Lisa, the author, was only 28 when she was diagnosed with breast cancer. She had the mastectomy, the lymph node check, the full lymph node removal, the MRI scan, the six cycles of chemo.

I am enjoying the warts-and-all descriptions.

I recognise the way life comes to a screeching halt, the way friends rally round (and give you hugs that tell you that you are ill because they last just a few seconds too long), the way you focus on small things because focusing on the big picture is just too scary. I recognise the appreciation for the straight-talking of doctors, and the dislike of leaflets that make the effects and side-effects of cancer sound not-too-bad-at-all.

I am reading this book partly because I want to be reassured that you can go through all this misery and come out smiling at the other end.

The introduction is promising, with talk of how Lisa’s lump spawned not just cancer, but “a blog, a book and a writing career.”

So halfway through this young woman’s tale, in the middle of descriptions of sick bowels and sick bowls, of clumps of hair falling away and wig wearing woes, I thought I’d just look at her blog to see if (a) there is a lovely picture of her with some newly grown long hair, and (b) she is now the proud mum of a couple of adopted orphans (the chemo having fried her eggs).

And here I am, open-mouthed with horror when I read the words “Lisa’s funeral”. Apparently, three years later, her cancer returned in her bones and brain, this time incurable.

Wham. There it is, back again. The sheer terror.

It hasn’t reared its ugly head for several months. Not since I’ve been cheerfully trying to convince everyone (including myself), with reasonable success, that this is an early cancer which will most definitely be cured. Once the onslaught of treatment is over, the cancer won’t come back.

I know, I know: my cancer really is an early one. It’s only 1.8cm, not Lisa’s 5 (although my pathology report talks of a 5.5cm tumour – they include all the pre-cancerous cells). I had 3 cancerous lymph nodes out of 17, against Lisa’s 24 out of 25.

I know these things. You don’t have to tell me.

But I cannot help feeling my stomach churning right now. There is the gravity-defying fear I felt when I was just given my cancer diagnosis and was waiting to see whether the MRI scan showed any further fun and games in my breasts (it didn’t). (But neither did Lisa's.)

I am reminded again that cancer is not just your common cold.

It’s easy to forget, because a cold tends makes me feel much worse than the cancer cells. Really, until I chanced upon that breast lump, I had no idea. I felt fine. I still feel fine (not counting the post-surgery slump and the grief for my mother). You cannot feel cancer growing.

But breast cancer can kill. It does, all the time, at a rate of 1000 women each month in the UK alone.

So I will put Lisa’s book away and look at the earth in front of my feet. 

Don’t look sideways, because there, in the corner of my eye, is that question looking straight at me...

What if it isn’t OK? What if my babies have babies of their own and I am not there for them?

Don’t look at the horizon, because I am imagining it bright and sunny and I don’t want to risk seeing any gathering thunder clouds.

Most of all, I must remember this: that each and every cancer story is different. It’s like hearing about another woman’s childbirth: that is not going to help you prepare for your own. My own birth stories are not going to be of any use to my pregnant friend (they include my older daughter’s spectacular arrival in the back of a stationary ambulance outside our front door, having worked her way out as I hobbled down the garden path, determined not to be cheated out of the home birth she was promised – you see, my children's births were unlike any other, and so will my cancer be).

Let me take a deep breath, therefore, and let me take another step. Onwards and forwards, if not upwards.

And do remind me to post those Owl stories next, before I burst forth with another miserable bit of blogging.

6. Good news?

Yesterday was Results Day.

There are people whose job it is to slice up my right breast and lymph nodes, nice and thin, and look at it all through a microscope. My surgeon will tell us what the tissue looked like. 

Will I need a tissue?

Making my way to the hospital, I have no idea what to hope or fear. What is good news? What is bad news? It is my profession to know these things. I even know the definition of bad news. I’ve quoted it in my very own book, on page 29.

“Bad news is any news that drastically and negatively alters the patient’s view of her future.”

Perhaps that is why I am not nervous. I know that whatever the microscope threw up, it cannot make my future any more difficult. Even if every single slice of breast and all my lymph nodes showed further cancer cells, the outcome would be the same.

A period of chemotherapy, trying to mop up any adventurous cancer cells that might have made their way beyond the breast and the lymph nodes. Radiotherapy, perhaps. (In for a penny, in for a pound.) Years of hormone treatment, to stop my left breast getting similar cancerous ideas.

And then, that will be that. Cured. This is my view of the future: six months of my life taken over by cancer – perhaps a  year – and then I’ll be merrily cycling off into the distance, leaving the cancer firmly behind.

Bad news would be the discovery of aforementioned adventurous cancer cells, but if they exist, they are safely out of reach of this month’s microscope.

There is another aspect to my lack of nervousness. It feels as if I’ve become inured to an onslaught of bad news. My lack of control over life events is not easy for me, but I am trying to see it this way…

There is nothing I can do to change what is happening in my life. The only thing I can try to change is my response to it.

I’ve been trying.

So, what did the surgeon tell us?

She was smiling this time, so I think it can be classified as Good News.

All the breast slices were fine. No sign of cancer cells, or even pre-cancer cells, anywhere else.

Of the 17 under-the-arm lymph nodes that were taken out, three turned out to have cancer in them.

It could be worse.

What’s next?

The surgeon will now hand me over to the Oncology Team. (Note how good I have become at being a patient: I am putting my life in the hands of others, who take me on, sort me out, pass me over to the next expert. I do not resist. I am grateful, even, that there are people who know what to do with me and my cancer).

My surgeon and Owl with his amputated breast wing

It was a bittersweet parting, because this surgeon has been brilliant in every way. She even sent one of her junior doctors off to fetch an operating outfit, so she could have her picture taken with Owl. (Photographic evidence of his surgery was missing in his album.)

My dear surgeon, if you are reading this: I salute you.

I will meet with the oncologist in a month's time. She will talk me through the proposed chemotherapy treatment. This is likely to involve a dose of poison pumped into my veins every three weeks, giving me just enough time to feel utterly miserable and crawl back to relative normality before the next dose is due. I expect this to start, roughly, at the beginning of August; it will last, roughly, until Christmas.

So that’s 2014 sorted.

I came home carrying yet another cancer booklet, this time on chemotherapy treatment. (If this barrage of information continues, I will soon need to build a new bookshelf). I read it, cover to cover, lying under the tree in the garden.

The chapter on side effects runs to 20 pages. There is all manner of excitement to look forward to. (“Possible” side effects, the booklet is keen to point out, so let me be accurate here: “possible” excitement). 

There is the promise of another booklet for each of these possible side effects, so yes, I'd better start putting up that bookshelf.

Some of the "possibilities" come as no surprise.

There will be hair loss ("Yes, there will," said the breast care nurse).

Nausea (“No there won’t”, said the breast care nurse, “they have drugs for that these days” – let’s hope she is right. I am not a pleasant companion if nauseous; pregnancy was bad enough).

Bowel changes (won’t go there, it will put you off your morning coffee).

Tiredness.

These I knew about.

But on the 19^th page I spot a side effect that I intend to make full use of, even if I don’t get it. “Doctors sometimes call this mild cognitive impairment (MCI)”, the booklet explains. “But it’s more usually known as ‘chemo-brain’.”

The problems with memory or concentration can last until well after the treatment. I am looking forward to having an ongoing excuse and a fancy name, at last, for not remembering people’s names, where I put my purse, or when my daughter is meant to bring a packed lunch to school. Although I fear the suggested “useful way of managing it” is not going to be much good, because it involves putting reminders on your mobile phone.

Problem is, where did I put my mobile phone?

5. The rose-strewn grave

I thought that once my mother's funeral was over, I would be able to focus on the business of getting on with cancer. But I can't.

My surgeon explained all my test results today, and gave me a glimpse of the treatment that awaits me. I was going to tell you about that, but I can't, not yet. It just doesn't seem important enough.

Because I miss my mother. Terribly. I haven't really missed her for years, but I miss her now.

To my profound surprise, I find that I am longing and longing to go and sit on her rose-strewn grave. Surprise, because I never imagined I might find comfort at a graveside. I never imagined I might feel close to her there. All I need to do is open my heart, wherever I am, and she will be with me. Right?

At the funeral, the sun was shining on my mother's coffin as we stood under the dappled shade of an age-old tree and showered her with large red roses. The day was full of people, full of music, full of memories, full of everything.

What I need now is a day that is empty of everything, so I can sit and listen to the silence, and perhaps find her there.

I imagine the silence of my mother's grave and am yearning for it.

What I don't need is a day full of talk about (non-)cancerous lymph nodes and chemotherapy planning. I go through the motions, I listen to the doctor and the nurse, I take it all in, I understand it all, I ask all the questions that need asking. And I want to know the answers, really I do. I am glad I didn't have to wait for Results Day any longer.

But coming home, I find that my cancer is merely a distraction from the business of grieving.

So here I am, realising with a lurch in my stomach that my mother is dead. Frankly, it should come as no surprise that a woman who has been dying for weeks is now dead - but I am surprised. 

It should come as no surprise that once your mother has died, you are grieving. But I am surprised, because I thought that I'd done my grieving beforehand, during the past four years of her illness and the weeks of her final decline.

I hadn't thought of putting the business of grieving on my emotional to-do list for the summer. 

That's why I can't tell you about my test results today. Rest assured: today's news was not shocking enough to lose any sleep over. I will tell you tomorrow, perhaps.

4. The Softie

I thought I knew the lexicon of cancer, but I’m learning a whole new vocabulary.

Anyone heard of a “softie”?

I was given this contraption by the breast care nurse, a few weeks before surgery.

It’s a soft little cushion designed to be stuffed inside your bra, until such time that you can be measured up for your very own breast prosthesis, a few months down the line.

I have chosen not to have a breast reconstruction.

I believe you have to choose whatever solution will make you feel most “yourself”.

I can understand completely that for some, perhaps even most, women this means having an implant or a breast constructed from their own body tissue (a whole new learning curve there too –and it’s not for the faint hearted!).

I have never been in any doubt, however, that I would feel most myself if I had no breast at all, rather than an artificially constructed one.

Enter the Softie.

The day I was told I needed a mastectomy, I explained the situation to each child on their return from school.

My younger daughter was initially horrified at the thought of having my breast cut off (“eeuuugghh”), but it is remarkable how quickly children adapt to the facts when they are properly explained.

She wondered: could I not have a new breast made? 

I answered that this is indeed possible. 

Lots of women choose it and are very happy with it.

I also explained my reasons for rejecting the various reconstructive options.

I don’t fancy having something “not-me” inside me; nor do I fancy having a bit of my shoulder muscle moved into my breast space; and I don’t have enough stomach fat to be used  as breast filling.

She agreed that these did not sound like enviable options.

After a few moments’ contemplation, Bear (who talks a lot, using my younger daughter’s voice) came up with a Very Good Plan: I could just stuff my bra with toilet paper.

I complimented Bear on his excellent thinking and told him that someone has invented something even better.

So Bear had been looking forward to Softie’s arrival, wondering whether he might get a chance to prance about in my removable breast.

(Alas for him: Owl immediately laid claim to Softie, keeping a hold on her until Mastectomy Day – although he clearly hadn’t been told which bit of his anatomy it was meant to cover.)

Six weeks later, Softie has had a few tentative outings.

Four days post-mastectomy, I wanted to go to evening mass to light a candle for my mother. Having been happily bra-less and lopsided, I thought I should probably make an effort at looking conventional for my first mingling with the outside world as a one-breasted woman.

One wouldn’t want to worry the worshippers, so out came Softie who had already been relegated from perching proudly on Owl’s ear to lying expectantly on the bedside table to waiting willingly in the sock drawer.

There had been a subtle but significant, perhaps even seismic, change of perception and body-image during that first breast-less week.

Having cried over the impending loss, in the end it felt as if my breast had outstayed her welcome, especially after the postponement of surgery.

I felt she was in the way, hindering my forward path.

Of course having a rounded breast replaced by a long flat scar is not the most fortunate of swaps. But I am getting used to it.

In fact when my breast care nurse suggested I wear Softie on leaving hospital, I dismissed her.

It wasn’t so much a “who cares, take me as I am” attitude (although there was that too, because truly, who cares? Especially in a hospital where people have bits missing all over the place).

It was a strong feeling that stuffing my bra with a fake breast would hinder my process of making friends with my new shape.

But now, I found my bra, fished Softie out of the sock drawer, and duly stuffed my front.

I almost cried: looking down, I didn’t feel re-balanced but utterly knocked off-balance.

My fake breast looked far too big.

It felt like covering up a space that wasn’t empty at all, because it had been filled with the love of family and dear friends.

It felt like an intrusion. All I could see was a monstrosity where there had been a glorious breathing space.

I took myself downstairs in one of my standard tops (I’m very low on baggy outfits, I’ve realised these past few weeks as I’ve searched and re-searched my wardrobe for something loose to wear). My husband, son and older daughter were sitting in the kitchen.

“Look at this,” I complained. “It’s ridiculous! I look like Dolly Parton!”

The three of them contemplated the matter, looking me scrutinously up and down.

“Mum, it’s fine! It looks normal,” was my older daughter’s final verdict (and you can trust a 14 year old to be honest in such matters). The men agreed.

So we went out, Softie and I. I did wear a large scarf to church, but that was really to cover the drain that looped from the bottom of my T-shirt into my shoulder bag.

No-one stared.

But now, the Softie no longer fits me.

Since my drain has been removed,  the fluid that has been accumulating has nowhere to go and has caused my chest to swell.

So the day before we travelled to Holland for my mother’s funeral, I thought I’d better assess the situation afresh. I hadn’t been wearing Softie because of the uncomfortable swelling, but lopsided wasn’t quite the funeral look I was after.

This time, only my younger daughter and Bear were available as independent assessors.

And this time the verdict was firm: Softie on top of my swollen chest was rather too much of a sum total.

We tried various options.
Empty bra? Hm. Looked fine initially, but one Bear Hug produced a valley that has no place in what should be a mountainous area.

Perhaps I would have to resort to the toilet paper proposal?

Thankfully, Bear came up with another winning solution: Brain Fluff.

We have a large bag of soft toy stuffing upstairs, which was used to re-fill Bear’s head when his brain volume had reached dangerously low levels.

Brain Fluff, the depleted Softie, and the original Softie filling

Softie’s carefully moulded stuffing was duly replaced with half the volume in Brain Fluff, making me look perfectly normal and unremarkable.

Yesterday morning before the funeral, my breast had swollen alarmingly (and had made disconcerting sloshing noises when turning myself over in bed). 

Even Brain Fluff Bra became too  much, so some of the Brain Fluff was picked out and ended up in my wash kit.

Luckily, in the end, we were perfectly presentable, Brain Fluff Bra and I.

And I now find that there is a certain feeling of comfort in Softie’s gentle pressure.

Perhaps one day my prosthesis and I can be friends.

3. How do you cope?

We had the most beautiful funeral for my mother yesterday, full of roses, tears and sunshine.

We arrived back in London this morning. Tomorrow, I have an appointment with the surgeon to hear the pathologist’s verdict on my cancer cells.

Here is something people keep telling me: “You are coping so well… I don’t know how you do it.”

The thing is, I really don’t know about this. I have no idea what coping looks like, and come to think of it, I have even less of an idea what not coping looks like. The truth is, you just go through life from day to day, because what else can you do?

It is 12 weeks since I received my cancer diagnosis, and I have spent most of those weeks sitting around, staring at life. 

Is that coping?

I have prioritised the few things that I felt were absolutely necessary in order to keep me sane:

Sitting at home. 

Spending time with my family - but not necessarily interacting with them (sorry kids).

Helping to look after my mother and organise her funeral.

Sometimes, my priorities may seem strange. 

Trying to sort out the guitar chords for the funeral hymns, and gathering enough strength to play and sing yesterday - that was far more important than worrying about tomorrow's test results. 

(Quite frankly, I haven't really thought about the impending results at all. In fact I declined the surgeon's offer to give me some preliminary results last week. I needed to get through the funeral week first.)

I need to hear myself say this out loud, over and over again: 

I am a cancer patient. 

I am a one-breasted woman. 

I am mother-less. 

I can now say it without crying. Practice makes perfect. 

Sharing these words, they become real. Perhaps writing this blog is part of that effort to make things real, scary as it is. 

You, who are reading this, will then be able to speak those words to me too, confirming my new status in life, normalising what still feels new and abnormal. 

Helping me.

Then, I can start laughing about it all - and yes, there are plenty of laughs to be had, I can assure you. I feels like I've shed enough tears to see me through the whole of 2014, but I have also laughed and laughed about the ridiculous details of breast cancer. 

Is that coping?

Last week, I attended the outpatient clinic to have some of the excess fluid drained of my chest (the drain that was left in after the mastectomy had become blocked a few days earlier and had been removed – a rather painful episode I won’t bore you with). 

The breast care nurse, holding an oversized needle and syringe at the ready, asked me: “Are you back at work?”

It was only nine days post-mastectomy. The trip to the hospital (which also happens to be the place where I have my office) had used up my quota of energy for the day. I hadn’t been able to do any work at all, not for weeks and weeks and weeks. 

My wonderful, understanding GP was already licking her pencil to sign me off work for at least another month, “to be getting on with”. 

The nurse’s innocent question made me feel utterly inadequate. This nurse has followed my cancer journey from the start, and also knows about my mother. 

Are other women back at work with a breast full of fluid? 

Perhaps I am not coping, after all…?

If I have any answer to that question of coping, it is this:

I am coping because of my family and friends.

More than anything, I am coping because of the solid, utterly reliable support of my husband whose love is never in doubt.

I have wordlessly abdicated from my family responsibilities, and my husband and children do not question this: they bring me tea, sort out the washing, get on with their homework (mostly).

My questions would be: 

How do you cope when your cancer is so advanced that a cure seems optimistic?

How do you cope when you have children under tea-making age? 

How do you cope when you don't have a partner to hold your hand and pick up all the pieces you have dropped?

How do you cope when you cannot afford to take time off work? 

How do you cope when you do not have so many wonderful relatives, friends and colleagues rushing to the scene with supportive words, thoughts, and acts of kindness?

It may sound cheesy, but I really do feel carried on the wings of everyone’s love. 

I think that's why, and how, I have coped so far.

It’s a strange thing: these months have been awful, and I know there is quite a lot more to come. And yet, I cannot remember a time when I have felt more deeply blessed.

2. The problem with Winnie the Pooh

There was a time, not so very long ago, when I was filled with horror at the thought of travelling by train or waiting at the post office without anything to read. The wasted time! The missed opportunities! The potential for boredom! Long live the Kindle app!

Now, I cannot focus on anything beyond my own little world, which has shrunk to the size of my bedroom.

My overnight bag for the lumpectomy held and optimistic Jane Austen, but the sentences that had been so full of delight the day before surgery became an impossible obstacle course the day after.  Back home, I tried Agatha Christie, but that required me to hold various bits of information in a brain that refused to hold anything. In the end, my younger daughter’s book, allegedly “perfect for 8-13 year olds”, did nicely for a zombied 50 year old. I spent most of my post-lumpectomy weeks watching harmless DVDs and sleeping.

It was partly the anaesthetic trying to maintain its hold, but it was also just a lack of brain space for anything but getting my head round my new station in life. Travelling home from hospital that ominous first day of this cancer journey, not with a cleared cyst but with an alarming scan and an appointment to come back for The Result, I found myself still sitting on the bus several stops past my home, with no idea where I was. Granted, I don’t usually take the bus (bikes are best), but I’ve lived in this street for 20 years and should really know my way home.

I did try to get back into doing some work, 10 days post-lumpectomy. I am lucky to have a flexible job that I can do from anywhere, currently revolving around analytic writing. Making the thoughts and words travel from a corner of my brain to the computer screen took so much energy that I gave up.

Then I was hit by the news of the dodgy lymph node and the mastectomy, and my mother started dying, so all thought of work was abandoned. Nobody had demanded anything of me but myself, and by now, even I had accepted that my only work was to get through this stretch of life.

Now, even Winnie the Pooh is too challenging.

I have spent the past few weeks:

•       Sitting with my mother, or talking and writing about my mother.
•      Sitting/lying in hospital, or talking and writing about hospital.
•      Lying in bed. Motionless. A lot.

Nothing else.

 A good friend thoughtfully brought some undemanding magazines, but they are too demanding. DVDs? They involve a story line. I have space for only one story, and it is my own. The BBC news? Not interested, although I let it wash over me, just to try and feel normal again. 

The only thing I managed to sit through was Holland beating Spain in the football world cup: one goal at a time (five times! and only once for Spain!), manageable even without understanding the off-side rule.

The brave friends who have visited me have had to put up with this (and they did: all credit to them). When I made the mistake of asking them how they were, I had to stop them half-way: Sorry folks, don’t bother, I know these are plain English words but I have no idea what you are talking about.

I did try Winnie the Pooh. The problem is that I am told Bears like honey and Piglets like acorns, or was it thistles? And what is it that Tiggers like? I'm sure it is important, but honestly, I couldn't care less.

You see: Too Much Information.

I like a cup of tea. That is all I know. I hate sugary tea - but right now, I wouldn't mind a bit of honey in it.

1. Of breasts and mothers

Seven days ago, I lost my right breast to cancer.

Three days ago, I lost my mother.

There is no doubt in my mind which of these is the significant loss. One is only skin-deep; the other touches my soul. I have not focused much on my missing breast. I have focused everything on my dying mother.

That feels like a long road travelled since the day, just over two months ago, when I was given a diagnosis of breast cancer. It’s been a bumpy road where each time I got my head round the new view, another twist changed my outlook afresh.

The small breast lump that everyone (including doctors) thought was an innocent cyst turned out to be cancerous. The operation to remove the lump and spot-test one lymph node brought a smiling surgeon to my bedside: all went well, the cancer was out and the lymph node looked fine.

Two weeks later, once everything had been properly peered at through a microscope, the now non-smiling surgeon had to tell me that the breast tissue actually looked rather dodgy, so best to take the whole breast off. And alas, that happy looking lymph node did have some cancer cells lurking in a corner, so all the other nodes should come out too.

I was flabbergasted at this bad news and could only nod tearfully. Yes, of course, mastectomy on 30^th of May. Fine.  I had a week to get my head around the fact that my cancer wasn’t as well-behaved and well-contained as we thought.

During that week, my sisters and I started worrying about our mother.

We had worried many times before, but things sounded so much more serious now.

My mother was 84. This strong woman, who had raised three daughters single-handedly and thought a 60-mile cycling trip was a lovely day out (even in her late 70s), had been increasingly frail during the past few years. Now in a nursing home, she was visibly fading.

My mother and me, just days before I was given my cancer diagnosis in April 2014

What if she died when I was incapacitated by surgery? She lived in my native Holland. I live in London with my husband and three teenage children. My mother’s sister died when I was in hospital with the lumpectomy, and there was no way I could make it to the funeral. They don’t hang about in the Netherlands. People are buried within a week.

So I travelled to Holland to talk to my sisters about end-of-life choices and funeral plans, just in case, and to visit my mother briefly.  Then, on the day I was there, she took a significant turn for the worse. I am a palliative care nurse. I recognise the signs.

I could see that she was dying.

If you had to choose between staying with your dying mother, or putting the North Sea between the two of you in order to have life-changing and potentially life-saving surgery, what would you choose? I sat in my mother’s room with my sisters and the family doctor, devastated by this choice. “Am I right in thinking”, I asked the doctor, “that if I have my mastectomy the day after tomorrow, there is a good chance I will miss mum’s dying?” Yes, he said. You are right.

I rang my surgeon there and then. She is everything a surgeon should be – competent, clear, honest, good at communicating, and compassionate. “Don’t worry,” she said. “You have a bit of time. I will put you on the surgical list for 10^th June instead.”

I decided to return to London briefly, not to prepare for a hospital admission, but to pack a proper suitcase. I had only brought a clean T-shirt and a pair of underpants in my hold-all. I was still recovering from the previous surgery and had travelled as light as possible.

This time, I packed not only a better supply of underpants but also a funeral outfit. Best be prepared for all eventualities.

On what should have been Mastectomy Day, I was sipping a cup of coffee, looking down at my breast which I had been so sad to say goodbye to, but which now suddenly seemed to be outstaying her welcome. I flew back to Holland with a suitcase full of funeral music and a heart full of emotions that did not have a name.

That week, spent at my dying mother’s bedside, was one of the most difficult, beautiful and meaningful of my life.

My sisters and I grew ever closer. We talked and talked and talked, we cried, we laughed, we hugged, we sent each other off to have some breathing space.

I shared my nursing skills with them so we could all care for my mother with tenderness and competence, and without fear.

And we sat with our mother as a lifetime of experiences, worries, fears and love worked its way to the surface, emerging through her muddled speech and troubled eyes. We had moments of heartbreak at our mother’s struggle to accept that her life was ending. We had moments of indescribable bliss as she worked her way towards trust, relaxation and infinite love for us, her daughters: brief glimpses of heaven.

During that exhausting but important week, the 10^th June crept ever closer. My mother was clearly dying, but she did not find it easy and it took her a long time. It was devastating to sit there leafing through the diary again and again, calculating how soon we could have a funeral in order to fit it in before the mastectomy, or how late we could have it in order to give me time to recover in London and return to Holland… When would she die? How long could I postpone this operation? How long did I want to postpone it?

My mother was the only person in the world whom I had protected from knowing about my cancer, because for the past few years her brain had been unable to process complex new information, unable to put worries into perspective. She was now drifting in and out of the here-and-now. Her overriding concern that week was for me (“Is Irene alright?”) and my children (“You mustn’t leave them on their own”). She was hugely comforted by my presence, but disconcerted at the same time: why wasn’t I with my own family? Shouldn’t a mother be with her children, always?

In the meantime, my friends and family agonised about my health. I cried with my sisters about these impossible choices. There was my love for my mother and sisters and my desire to be with them on this journey towards her death; and there was their love for me and their need to see me off on my own journey towards ensuring a long and cancer-free life.

In the end, when I spoke to my surgeon again who said I had to make a decision (go ahead with the operation on the 10^th June, or postpone it for another week), I knew I had to say goodbye to my mother and trust that all would be well, for her, and for me. This woman, who had survived hardships for the sake of her three children, now needed to know that her grandchildren were safe, loved and cared for. If she had known about my cancer, she would be insistent that I went back to London for treatment.

The mastectomy was no longer a devastating operation. It had become something that had to be fitted into the diary. I was almost looking forward to having it done, so I could focus again on the more important business of family bonds.

I said a heart-wrenching but beautiful farewell to my mother on Sunday evening. We both knew this was the last time, and I felt that she was sending me home with all her love and a blessing. (No sign of confusion now.) I flew back to London on Monday. I was on the operating table on Tuesday morning.

Back on the ward, I could not bear any gaps in the curtains around me. I could not cope with the day-to-day chatter coming from the other beds. I needed to crawl into my own little hole. I hated the thought that people would see my tears and assume that they were for my lost breast. I could look at my bandaged empty chest without distress (on the contrary, I almost felt relief, as if I was finally the shape I was meant to be, evidencing the positive choice I had made).

So if one of the kind nurses or doctors asked how I was, post-mastectomy, I was fine. But if they asked how I felt generally, I choked on my tears: “My mother is dying and I had to say goodbye to her.” That was my overriding emotion.

I have never felt more vulnerable in my life, never in more need of care and support. Here I was, having nursed my mother all week, and now so weak I needed others to nurse me.

My first recovery week has been focused on being with my family, rejoicing in being back with my husband and children, phoning and emailing my sisters several times a day.

Yes, I have stood in front of the bathroom mirror in my full glory, and called my husband so I could cry on his shoulder at the stark sight of the new one-breasted woman I have become. Those were tears of loss, but not only of loss. Underneath the bandages I could see signs of hope for the future: hope of a life lived because of the choices I have made. Those choices were made out of love, for myself and for my family and friends.

And when my mother died at last, she died peacefully, with one of my sisters at her bedside who held me on the phone, across the sea, intimately close. All was well.

Now, when I look at my chest, I do not see emptiness.

I see the fullness of life and the bonds of love stretching far beyond death. I don’t know how all this will be in the future, but for now, the loss of my breast, the loss of my mother and the sustaining love of my family are intrinsically linked.

The steri-strips are gradually falling off, revealing my long flat scar. I look at it now, I trace its length with my fingers, and I am almost grateful.

I may have lost a breast, but it is the loss of my mother that has truly marked me.