89. Thinking of my mother...

Do you think about your mother? a friend asked me once. Do you miss her?

I have wanted to write about this for months. In fact I have written about it, but the writing has been private; it just wasn't blog-ready. How can you ever really capture your heart in words?

...It's like trying to explain your faith, or your love, or the meaning of life: such things are bigger than words. And because they are bigger than words, they lose some of their truth and their vastness as soon as you confine them to the words that are meant to describe them.

...It's like being asked to describe someone's character in three words. The words you choose are undoubtedly true, but there are thousands of other words you've had to leave out, and they would have been just as true.

...It's like that parable of the blind men who are presented with and elephant and asked to describe it. They end up arguing, because the man near the trunk says that an elephant is like a snake; the one near the leg says it's like a tree; the one near the tail says it's like a piece of rope.

I am worried that if I tell you about my mother's loss, I will give you a tree but leave out the trunk.

Yet my mother's dying, her new absence, has been such a fundamental part of my cancer journey that this blog would be incomplete if I left it out. So I've planned and planned this blog post, but when is a good time to release it? I tried writing something at the beginning of November, around Remembrance Week, when the churches and my mother's nursing home held memorial services (I couldn't go but my sisters kept me in touch; they even filmed the song my younger sister and her friend contributed, which was so moving that it had me sobbing at my computer). But I couldn't get past the words-don't-capture-it problem.

Now it is Christmas time. Perhaps there is no better time to write about a mother's love for her child.

So let me try again, hoping that it won't spoil your Christmas; hoping, rather, that it will shine a light on your Christmas, as it does on mine.

Let me try to speak of the unspeakable.

(Warning: this is a long blog post and you've got Christmas coming up, so you may wish to skip it, or leave it for another, less busy day.)

The quick (and perhaps surprising) answer to my friend's question is: No, I don't miss my mother now.

I haven't had the space or the energy to miss her.

It is undoubtedly different for my sisters, whose daily lives have changed without my mother: the daily worries, the frequent visits, the caring. But for me, here in London, my mother's absence has not changed things much. The truth is that my mother hadn't been part of my daily life, or even my monthly life, for several years. 

Four years before she died, my mother was given a devastating diagnosis of pancreatic cancer. We didn't think she would survive (cancer of the pancreas is particularly nasty). But she was a survivor, and once again, the thought of her children stopped her from dying. She was lucky: one of the few patients with this diagnosis whose cancer is caught early enough and is operable. She decided to have invasive surgery that few people of her age (she was 80) can cope with, and she crawled back from the brink.

But it speeded up the advance of other symptoms. My sisters and I were convinced that something was going wrong with her brain, but the professionals (including the dementia clinic) had dismissed a dementia diagnosis. Instead, they sent her a psychiatric nurse for regular chats, which she enjoyed, but which couldn't stop the symptoms. She was finally diagnosed with vascular dementia.

Two years before she died, she moved into a nursing home. Everyone (except her) thought it was fantastic. She had her own sitting room with her own furniture, bedroom, bathroom and kitchenette. She had nurses keeping a eye on her.

My mother was desperately unhappy with her diminished life. No more cycling! She never stopped complaining about that, and about the many other losses that came with increasing mental and physical frailty. She cried about it. This was hard for us, because my mother was not one to complain, and until that awful cancer diagnosis, I'd never seen her cry.

It also meant that my mother, who used to come and stay with us in London several times a year, could no longer do so. And in the past few years, we rarely spoke on the phone. When I did ring her, it was (I am ashamed to admit) out of a sense of duty. Her deafness, her slight confusion (although she never lost sight of who we were and what we were up to), her uncharacteristically vocal misery: it was hard.

We had turned into carers, cajoling and mothering her.

I found myself turning impatient, unable to listen to her woes. That was hard for me: the fact that I could be endlessly patient with others, listening to them and to their problems with an open heart, but somehow I couldn't do it for my own mother. She was my mother. Somehow, it seemed that being an understanding listener wasn't part of a child's job description, even if the child is grow up.

I don't miss all that.

Perhaps if I went back to Holland, the answer to Do you miss her? would be different. 
I haven't been back since the funeral. I am trying to visualise going back to my home town and not seeing her there. During all the three decades of living in England, my visits to Holland have been punctuated by visits to my mother. Visiting a grave instead of seeing my mother will undoubtedly make reality hit.

Hm. See? This is where my words, however true, point you in the wrong direction. Because of course I miss my mother.

Of course I do. I was brought up short only yesterday, when the Christmas CD I was listening to suddenly gave me Bach's beautiful Jesu, joy of man's desiring. Once, years ago, when my mother was staying with us and she heard me trying to play this on the piano, she rushed in and said, I love that melody! You can play that at my funeral! So we did, and hearing it again all of a sudden brought back my mother's coffin being carried out of the church by my husband and my son; it brought back my mother.

Tears welling up. Of course I miss her.

But during the last years of her life, she lost the ability to mother us. Yes, her love was there, and her pride in us and in her grandchildren. But mostly, her worries were there, for us, but especially for herself.

Perhaps the hole was dug when she became ill with pancreatic cancer. Much of the hole she would leave in our lives was already there by the time she died. I think that is probably true for many families who lose part of someone they love to a debilitating illness - especially dementia.

But here is what has surprised me this year.

I knew that people leave hole when they die. I didn't know that by dying, people can also fill a hole. They can leave a hole and fill a hole at the same time.

The hole-left-behind is fairly easy to describe.

The absence of a mother who has been ever-present, always there, ready to receive me, ready to visit me. The never-again voice, touch, smile, hug, admonishment. Her skin, her eyes, her pleasure in seeing me, her coffee with a biscuit (or better still, cake). Her unconditional love, despite her many suggestions for ways to improve our lives (starting with our haircuts).

The foundation of security on which I built my life.

But the hole filled: that is an unexpected gift.

It was hard, those weeks when I faced a mastectomy and she lay dying. It seemed an impossible crash of circumstances, yet I also knew that it could not be otherwise. Somehow, the two seemed linked. My mother didn't know that I had cancer. I am a passionate advocate for truth-telling, but I knew that her dementia would prevent her from coping with my diagnosis.

But on some unspoken level I felt that she did know, and that dying was her gift to me. Her unrelenting distress at her own situation, her frailty, her need for care, and the worries that brought us (my sisters bore the brunt of this): I suspected that I would not have the space and energy for it all. Not physically, not emotionally.

Once the chemotherapy started, I would not be able to hide my ill-health. Worse than that: how would I cope with the constant worry about my mother, knowing that if anything happened to her, I would - for the first time in my life - not be able to go and support her, or support my sisters?

(And how true did this turn out to be. Several times, during the lowest points of chemo/misery, my sisters and I have sighed: Thank goodness we don't have to worry about mum anymore... How would we have coped with it all if she was still here?)

I cannot capture in words the heartbreak and beauty of my mother's slow dying, nor the profound transformation of my final moments with her.

How many people get the opportunity to share such a moment with a dying parent, a moment when you are both deeply and openly aware that death is imminent and this is the last time? I have seen enough deaths to know that the moment is either fairly unexpected (yes, even in a hospice: the family has said Bye, see you tomorrow but then the person dies in the night), or it follows a time of unconsciousness.

But because I couldn't stay with my mother until the end, because I had to leave her to have my mastectomy, my final moments with her were extraordinary. It is one reason why I feel that my cancer and the loss of my mother are so closely and so importantly linked.

My mother was so close to death that I had not expected her to still be conscious on that evening of our final parting, but she was.

It meant I couldn't just tiptoe out. Neither could I bring myself to say goodbye like so many times before, Cheerio, I'm going now, I'm off to London.

I had to make sure that we both knew the enormity of what was happening. My sisters and I had already told my mother several times that she was dying. That it was OK to let go. (Why oh why, we kept wondering, was she hanging on well beyond physical endurance?) But she had never acknowledged it. Was she too frightened? Too muddled? Too deaf?

That final night, she had barely been awake, but now I found her suddenly lucid. So I put in her redundant hearing aids (didn't want to shout my final words at the top of my voice, and still risk her mis-hearing them) and put my face close to hers.

Mum, I said, I have to go and leave you now.

I know, she whispered.

Mum, I won't be able to come back. I can't ever come back and see you again.

I know, she said again.

But did she? Did she really know? I wondered. I simply had to spell it out, to be sure; to stop me wondering forever after.

Mum, I said, you are dying. You are going to die very soon, and I won't ever see you again.

She looked at me, holding my eyes with the intense gaze only babies and lovers have, the gaze that reduces the world to just the two of you.

Yes, she said. Yes. I know.

With tears running down my cheeks, my face so close to her vulnerable open face, I suddenly I heard myself say: Mum, I will see you again in Heaven.

I will never forget what happened then. It has sustained me throughout my illness.

My mother's face was suddenly transformed: that is the only way I can describe it. She suddenly smiled such a beautiful, deep and genuine smile, she looked at me with such honesty and compassion and joy, it was as if I was looking into the face of God, of Buddha, of Eternity: I was looking at Heaven.

And in that instant, all our worries and fears fell away. All that caring, cajoling, reassuring, patronising of an elderly mother. All that anxiety about her life, her death. It was as if for the first time ever, my mother could see Heaven, and could finally believe that she had a place in it. 

YES, she said.

And suddenly, the hole was filled. For the first time in years, she could be my mother; I could be her child.

I could let go of mothering my mother. Choking on my tears, I asked her something that I could not have asked anyone else. Not in the same way. Because she was my mother, and I suddenly knew that I needed her in a way that had never been this obvious.

Mum, I sobbed, when you are in Heaven, will you pray for me, and for my children?

She looked at me with such love and such joy, a joy I have never, ever seen in her before (and which had definetely been absent during her final years). It was as if she had finally found herself - and in doing so, she had found the eternal love of a mother for her child. 

Yes, she said, smiling. Yes, I will do that.

It was a promise that, like my wedding vows, will sustain me for the rest of my life. 

Her hands, so weak, so old, so trembling, tried to bring my hand to her pursing lips. Thank you, she whispered.

I embraced her, kissed her, Oh mum, you have been such a wonderful mother. Thank you, thank you... I love you. Goodbye mum. I am going now.

I turned once more when I walked out of her room and I saw her looking at me, still smiling, trying to wave.

Where my mother and I said our final goodbyes

I never saw her again. I cried and cried and cried after that. I've cried every time I told this story (and my listeners, bless them, have cried along with me for good measure). I cried when I first scribbled it down, sitting in the Surgical Admission Lounge less than two days later, waiting for my name to be called to have my mastectomy (I know, not an obvious place to be writing such things, but I was worried that the anaesthetic would muddle my memories of the exact words, the exact touches). I am crying now, typing this up more than six months later.

Amidst all the distress of my mother's final illness, and all the distress of my cancer diagnosis and the impending mastectomy, there it was. One of the most beautiful moments of my life. Devastating, but beautiful.

With my mother in 1964 (age 10 months)...

...in 1976 (age 12)...

...and in 2014, in her nursing home, before we both got ill

The most important thing a mother can give her child is absolute and unconditional love.

(And, I suppose, a father - but I wouldn't know about that.)

You may clash, you may argue, you may get annoyed, but the bottom line is that your mother loves you no matter what you do. My mother may not have liked everything we did - she may, at times, not even have liked a daughter very much - but she always, always loved us. Wanted the best for us. Put our needs before her own.

That is a solid foundation for living your life: knowing that you are worthy of love. I have found that the foundation doesn't crumble when the builder dies.

Now that my mother is gone, it may be expected that I miss that love; a hole left behind. But instead, a hole has been filled.

Perhaps this is especially so because I have been ill with cancer. Had my mother been alive, I would have had to hide my low moments, my illness, my distress.

But I find that now she has died, I can simply summon her. I don't need it often, but sometimes, when the day is bleak and the bones are weary and the tears are near the surface, I find myself whispering, Mum, mum, I'm so ill.

And there she is, sitting on the edge of my bed.

In life, my mother could sometimes gloss over my problems or concerns, try to make helpful comments, suggest a bike ride (her cure-all for all woes) or, failing that, a better hairdresser. But if something was really serious and it was clear that no amount of cycling would solve the situation (a miscarriage, say) she would simply be there and acknowledge the pain. Oh my child. That is terrible.

That's what she does now.

That's why I don't really miss her: I don't feel that I have lost her.  Not really. I feel as if I have found her. She has been with me throughout my cancer treatment.

She has been more  present to me in recent months tha she has been for years and years.

There is another hidden gift in all this. Whenever I feel guilty about not being able to do things for my children, being in bed or in hospital or just stranded on a chair, I think how in the end, that mattered most between my mother and I was how much she loved me. Not how much she did for me: simply, how much she loved me.

And then I know that however ill I might be, I can still build that fundamental foundation for my own children.

I don't think I have finished grieving. Perhaps I haven't even started grieving properly, but am just delaying things until I am better. When I think of my mother properly, I feel so sad that she is no longer here. Sometimes, that makes me cry. 

But I also feel warm, filled with love and gratitude. And I know that the day will come when I think of her, perhaps hearing a strand of Jesu, joy of man's desiring or looking at a sunny day that would have made her jump on her bike, and I will smile, and smile.

There she goes, my mother!

Christmas can be hard for those who are missing someone they love, and especially those who have lost someone this year.

I hope that this Christmas, you too will be able to think with a smile of the people you love, past and present, who are the foundations of your life.

I am now going to take a break from blogging until after the New Year.

HAPPY CHRISTMAS EVERYONE, and thank you for sticking with me throughout this turbulent year.

45. Of mothers and children

Writing the blogpost about talking to teenagers made me think…

What if my children were small? What if I couldn’t say with a fair degree of confidence that my cancer will be sent packing? What if I had to tell my children something that is too dreadful, too big? And what if I didn’t have a husband who can provide a safety net for them, taking over when I am too tired or too distressed to explain that I am too tired or too distressed?

My mother with her three daughters in 1969 (more of her later)

Writing that blogpost about teenagers made me think of Amanda’s experiences as a child.

Amanda has intellectual disabilities. Her father died in a car crash when she was tiny, and when she was 14, her mother died of cancer. Amanda was an only child.

Amanda is my colleague and my friend. We didn’t start off as colleagues. We got to know each other in 2007, when she was a participant in my research study on What is it like for people with intellectual disabilities to have cancer? Her recovery from cancer involved a grueling year of chemotherapy treatments. She spoke eloquently about her experience and we published her story.

Amanda and her cancer story (2008)

Amanda was so keen to help doctors and nurses learn how to communicate better with people who have intellectual disabilities, that I recruited her to work at the university as my co-researcher.

Since then, Amanda and I have travelled across the UK and abroad, giving talks together about cancer and breaking bad news. To her delight (and, secretly, mine too) our picture made the French newspaper (local one, but still) and the front cover of a Dutch journal.

Amanda was keynote speaker at the first international symposium on cancer and intellectual disabilities
(France, February 2014)

What made me think of her last week was not so much her own cancer experience (although I must talk to her some more about that, this time as a fellow cancer patient. Now that I am struggling through chemo myself, I wonder how on earth she kept going?).

What made me think of her was a question I asked her, years ago.

“Out of all the things that have happened to you in your life, what has been the most difficult?”

It could have been all manner of things. To say that Amanda has had her share of difficulties in life is an understatement. Apart from losing both her parents in childhood, she has had to contend with the brain damage she was born with (leading to mild cerebral palsy and intellectual disabilities); living with an aunt as an infant whilst her mother recovered from the car crash that had killed her father; bullies at school; physical and financial abuse by her foster carer in her 20s; a diagnosis of non-Hodgkin’s lymphoma at the age of 30; and an aggressive programme of cancer treatments.

Which would she pick? I wasn’t prepared for her answer, which came without a moment’s hesitation.

“The worst thing of all was that my mum didn’t tell me she was sick. I still regret it now. She never told me that she was dying… She wanted to protect me. Of course, things like that are upsetting, but it’s definitely better to know. She used to be in a bad mood all the time, she used to shout at me, it was horrible. And of course I didn’t understand why!”

(We made a short YouTube video where Amanda talks about all this to me. You can watch it here. The poor chap filming it was utterly taken aback by our interview, and horrified when he had to ask her to repeat things a few times because of background noise. We laughed, reassuring him: Don’t worry! We have talked about this lots of times already! Amanda speaks it in front of large audiences!)

Writing that blogpost about teenagers also made me think of my own experience of having a mum with cancer.

It is not something I have really thought about before, because I was far too young to realise what was happening and have, as only children can, always accepted our home situation as perfectly normal.

But with me having cancer and my mother dying, suddenly, there it is with a brand new clarity.

When I was barely two years old, my mother had Hodgkin’s lymphoma.

It never seemed strange to me that she was often in hospital, that various family nurses pitched up at our house to look after us (my sisters were two years older and one year younger), that the three of us were sometimes farmed out to stay with various neighbours or relatives, that we were regularly put on the back of my mother’s bike to go and see the doctor at the hospital, that she was often tired, that we would have to play quietly in the living room whilst she rested in bed. That was just how it was.

In the same way, it was normal that it was just the four of us. My father had left suddenly and unexpectedly, not long before I was two. He never came back.

Now, I am putting these facts together, and I am flabbergasted.

How on earth does a young mother cope, being suddenly left as sole carer for three children under the age of four, having a cancer diagnosis and going through intensive chemotherapy treatment? (Only when she was dying and I was newly diagnosed with cancer did I realise, by talking to my older sister who has always known this, that all my mother’s hospital admissions, appointments and bed rests involved chemotherapy.)

But whilst I sailed happily through childhood, my older sister didn’t. Being the eldest, being much more aware, being a highly sensitive and perceptive child, and feeling too much responsibility too young, she saw that our mother was ill, or tired, or red-eyed from crying. My sister was worried.

But when she asked about it, our mother would put on the brightest smile she could manage and deny it. I’m fine! Everything is fine! Tralalala!

Oh, it makes my heart ache. For Amanda and for my sister, who were confused by a changing and worrying situation that was impossible to understand.

Presented with conflicting evidence (I can see that mum looks ill/angry/upset & mum says everything is OK), which is the child going to trust? Her own worrying observations and feelings, or her mother’s glossy reassurance?

Thinking about what my son said (“If nobody explains things, you are just left with lots and lots of questions”), who were these young children going to turn to with their questions and their worries? My sister was far too young. Amanda was disabled. There was no other parent available, no other source of safety. They were vulnerable and they were alone.

But my heart aches, too, for the mothers.

Both were undoubtedly consumed by worry about their children. They were single mothers (my own mother traumatised by her recent new single status).

Amanda’s mother knew she was dying. My mother was not predicted to survive either. (The doctors, apparently, were amazed at her recovery.) They must have been utterly devastated by their situation. No wonder they wanted to protect their children from such distress.

It’s bad enough for me, with a happy prognosis, a rock of a husband and children old enough to look after themselves. Even now, I find myself regularly unable to cope with family life in a way that would make it into the Book Of Outstanding Parenting Skills.

If my outlook was less than rosy, I doubt whether I’d be able to tell my children. I certainly couldn’t do it on my own, and I couldn’t cope with supporting them through the situation. I would need all my energy to survive each day.

On top of that, these were the 1960s. Remember, even doctors might not tell you about your cancer in those days. My mother, apparently, was advised by some official person that she absolutely mustn’t talk to us about the divorce, or about being ill. (Years later, she expressed regret at having listened to that advice.)

If only the mothers could have had more support. If only these little girls could have had more support.

Then, perhaps, they would not still be coming to terms with the memory of not understanding, not being told the truth, not being able to trust your own feelings. Thirty years later. Fifty years later.

They are both amazing women. This post is a tribute to my mother and to Amanda’s mother, but also to their wonderful, strong daughters who have survived childhood traumas.

My mother with the three of us, about a year after her cancer diagnosis

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.

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.