Friday, 1 May 2015

122. From lumpectomy to mastectomy: it’s a long, long story (WARNING: a VERY long story)

“I’m enjoying your blog at the moment!” someone told me recently.
“I’m a devotee of your blog!” said another.

Clearly, enjoyment comes in all shapes, including a let’s-sit-down-and-read-about-cancer shape. But there will also be people who have given up on my blog, and I don’t blame them. Who wants to be bombarded with regular updates on someone else’s misery, even if the misery is a year old?

My friends, I am looking at the weeks and months ahead, and I’ve realised that the last thing I want to do is update you on my one-year-old musings in real time. The first month was fun (fun, as you can see, also comes in all shapes) but trust me, things are going to get worse.

It’s exactly a year since my first operation, removing the nasty lump. But there will be more bad news.

The cancer cells, more numerous than predicted. The mastectomy.

My mother dying.

That all happened between mid-May and mid-June. By then, my head had exploded with words and I started this blog.

I’m leafing through my diaries and this is what I see.

14 May 2014: Very Bad News in the doctor’s office.
14 May 2015: My sister and friends are gathering in London for the Moonwalk.

16 May 2014 and beyond: page after page of misery – lots of tears with just a few bursts of laughter
16-17 May 2015: a 26 mile walk – lots of laughter with just a few tears (that’s the plan, anyway)

Late May to early June 2014: oh dear, do you really want to know? (If so, read on.)
Late May to early June 2015: sunshine, half term holidays, gardens, walks, friends, family - you name it, I’ve planned it.

I know which year I want to focus on in the coming weeks, and it isn’t 2014.

So I’m sitting down with a fresh pot of coffee and I’m going to give you all of last year’s remaining events in one go. This is not really a blog post. It’s a long, long story.

That’s a warning. It's almost 10,000 words long.

Don’t read this if:

·         you want to enjoy a carefree bank holiday weekend
·         you need cheering up
·         you are at work (you won’t get much done)
·         you are out of hankies
·         you are short of time

This 'not really a blog post' is for the handful of devotees who have stuck with my blog writing and deserve to read the rest of the sorry tale. In which case, I suggest you make your own pot of coffee (or better still, get the wine out) and settle down.

Here goes.


1 May 2014: The lumpectomy

My first ever surgery. I suppose I’m lucky to have got to half a century without ever spending a night in hospital. I was a complete novice. I didn’t relish the thought of losing control, fully and utterly, surrendering an unconscious body on the operating table.

I’d gone in the day before for an ultrasound to identify the lump and mark the spot, so that the surgeon would know exactly where to chop. Plus, I’d had a radioactive dye injection that would work its way into my lymphatic system.

Anatomy lesson: there are between 10 and 20 lymph nodes in each armpit, and they are the first port of call for travelling cancer cells. In the olden days, women would have their breast and all lymph nodes removed before putting them under the microscope, resulting in lots of mastectomies for lumps that turned out to be benign.

(A startling number of elderly women I’ve looked after in the hospice had only one breast. Their surgery had clearly been decades ago. Quite often, I only spotted the imbalance half-way through a wash – that’s how much a missing breast had become integrated with the woman’s body: it was hardly noticeable. I’m sure this affected my decision not to have reconstructive surgery.)

Nowadays, they have discovered that breast cancer cells travel in an orderly fashion, calling at the first lymph node first. It’s called the “sentinel node”, standing guard over all the other lymph nodes. So if the sentinel node is free of cancer, then you can be pretty sure that the cancer hasn’t spread. The radioactive dye will light up the sentinel node like a beacon, offering itself up to the surgeon’s knife.

She cuts out the sentinel node, sends it to the lab by express courier, gets on with the lumpectomy, and by the time you are lump free, the lab will have had a quick look at your lymph node and sent back word whether or not to remove the rest of the lymph nodes.

So, in off I went to the surgical admission unit at 7am. You sit there waiting with all the others, not knowing whether you are first or last on the list – you could be there all day, trying to pass the time without anything to eat or drink.

I can’t quite remember what time my turn came, but I do remember how I tried to look cool and unconcerned, walking to theatre in an unflattering gown. Chatting to the anaesthesist, fully compos mentis, thinking Ha! Let him try and knock me out! Doesn’t he know the extent of my capacity for insomnia? and then thinking nothing at all, just like that.

The first thing I did when I woke up was try and feel under my arm. Drains? Tubes? Lymph nodes in our out? No idea, but it looked promising. (In retrospect, it would have been nice if someone had told me straight away how the operation had gone.)

The rest of the day was spent in a blissful state of collapse. To my surprise, I really enjoyed the feeling of sinking deep into the mattress, being cared for by the ward nurses and not caring about anything. I managed to ring my husband around 5pm, several hours after being moved onto the ward (he hadn’t heard a thing, despite having been promised someone would ring him with an update – he was getting worried).

Later, the surgeon came round, smiling. All has gone well. Your sentinel node was clear.

(Famous last words.)

6th May 2014: The promotion

I came home the day after the operation. It’s been a period of blissful rest and recovery.

I did not have any pain at all, just a feeling of tightness perhaps when I moved my arm. In hospital, I merrily moved and stretched my arm in all directions, reaching for things high and low. Once home, I read the breast care nurse’s shoulder-exercise-leaflet. In the first week, don’t reach your elbow above shoulder level. Try and raise it gradually higher in week 2. Oh well. I folded the leaflet, put it away and never looked at it again.

I was meant to attend an interview at work. I had applied for promotion (from senior research fellow to associate professor) and the interviews were today. There was no way they could be postponed: getting the interview panel together just once was enough of a challenge.

Being a surgery novice showed in my plan to attend, regardless, drips and drains in tow if needed.

“You absolutely mustn’t!” professor so-and-so warned me sternly. “You will do yourself a disservice! You won’t be at your best!”

Well, I thought, how hard can it be to get to the place? And surely, I can engage my brain and mouth for the duration of the interview? Apparently not.

The professor was right, of course. There was absolutely no way I could have travelled to the interview or engaged my brain for even five minutes. But here is the lovely thing. The interview panel discussed my application in my absence and decided to grant the promotion without interview. All boxes ticked, apparently. How very kind of them.

At the time, I fully expected to be back at work within weeks. As it happened, it took the best part of a year before I could pick things up with my brand new job title.

13th May 2014: Recovery

“I am utterly exhausted still," I wrote. "I didn’t know that it can take weeks to recover from a general anaesthetic, but now I find that those with experience of surgery are telling me this.

I think, I do think, that I am getting used to the idea of being a cancer patient. I am already re-branding myself as a cancer survivor. Now I count myself lucky that it is cancer and not something that will affect my daily life in years to come. There is so much to be grateful for. Perhaps the most wonderful lesson has been how genuinely people care about me.

I am going to have to fight the expectations I now have of myself, of fitting in plenty of work before the radiotherapy. Perhaps I should ring my GP and ask her to write me off word for a bit longer?”

The next day, I was due to meet the surgeon to discuss the full lab results and the follow-up plan. Watch this space.

14th May 2015: The cancer has spread

“Oh no. Oh no. Oh no.

Back to being shaken again, more bad news.

The lab results have come back. There we were, my husband and I, armed with my diary, fully expecting to be told when my three weeks of radiotherapy would start, and that would be that.

But no. We were both utterly flabbergasted to hear that although all of the breast cancer has been removed (1.8cm diameter), they found lots of pre-cancerous cells in the 5.5cm diameter that was removed, leaving a clear, cancer-free edge of only one millimetre. That is not enough. They want a ‘clear edge’ of at least 2mm.

No point cutting away a bigger section now, said the surgeon. You are quite small-breasted. We will need to do a mastectomy.

I nodded. Ok. Of course. And then I cried.

Only a bit, of course, but still: it hit me that hard, despite having tried to visualise this scenario before. But that was before. I really didn’t expect this now.

‘Neither did I,’ the surgeon said. ‘We were all quite shocked in the meeting. It happens sometimes, but I really didn’t expect it to be you.’

And that was not all. Worse to come. That sentinel lymph node was, on clearer microscopic inspection, not clear of cancer after all. There will have to be a total lymph node clearance.

And this, to me, cannot be made to sound innocent or harmless. Clearer than any lengthy explanation was the surgeon’s singular expression of having ‘a little met’ in my lymph nodes. That is language I can speak: met = metastasis = cancer has spread.

I know, it’s only a lymph node, only second stage cancer. But that’s just it: 2nd stage, no longer 1st stage. I am now looking at a mastectomy and chemotherapy.

(I think the radiotherapy is no longer under consideration.)

Pffff. There is so much more to write. About how I have rejected the suggestion of having reconstructive surgery. About how I’ve told each child individually as they came home from school (and how helpful Owl was, once again, in doing this… all I had to do was put him on the table and tell my younger daughter that alas, Owl has to go back into hospital, etc). How I now face telling everyone else.

It’s overwhelming.

At least, I said to my husband afterwards, I am already a cancer patient this time. Still, this is hard.

I have often tried to imagine what it would be like to live without a breast. There is no question in my mind, none whatsoever, that I would feel less of a person or less of a woman after a mastectomy.

Still, I think of my breast, I look at it, I feel it, and I want to cry.”

15 May 2014: Sleepless

“This was the first night in months – probably the first night since I cured myself of crippling insomnia last spring – that I could not sleep. Staying in bed wide awake can be the beginning of a downward spiral, so I heeded that hard-learnt lesson and headed downstairs several times, back to bed and out again.

Sat sobbing on the sofa.

These are tears that must be shed, and true to the habit of a lifetime, I can only shed them in private. Perhaps that’s what the night time was for. No wonder I stayed awake.

Yes, of course I can live without my breast. Yes, I do believe that ageing women are beautiful, grey hair and wrinkles and scarred chests included: the canvas of a life lived.

And yes, I do mourn the loss of my lovely breast.

It’s not just a breast that is lost. It is also my blind faith in my healthy body. Nobody expected the lump to be cancer, but it was. Nobody expected the remaining breast tissue to be misbehaving, but it did. Nobody expected the lymph nodes to be cancerous, but they were.

I didn’t expect any of these things, I feel healthy and strong, and yet the cancer lurks.

How can I be sure that it doesn’t lurk in other, darker places? How can I trust my body again? How can I be sure that I will live to hold my children’s children?

I finally fell asleep on the sofa. When the morning shone through the curtains and I woke my husband with a cup of tea, he said he hadn’t slept much either: ‘I don’t know why.’

I know why.”

16 May 2014. Reconstructive surgery – or not?

“I cannot help but reframe my situation in a positive light,” I wrote two days after the Bad News. “Yesterday I started thinking how glad I am that it is a breast I am losing and not some vital limb or organ. I need my body, all of it: organs, limbs, muscle, fat, brain, eyes and ears. I am so, so clear that reconstructive surgery is not for me.”

Ever since that Bad News session with the surgeon, I have pondered the assumptions that were made about my wishes, and the difficulties I would have had if I had not thought through the mastectomy scenario beforehand. Not just a few weeks beforehand, when I was lumbered with that lump, but years and decades beforehand.

I thought all women did. What would it be like if I had to lose a breast? What choices would I make? But apparently not. “It’s never crossed my mind,” some of my friends have told me. So perhaps my preparedness for the mastectomy scenario (if you can ever be prepared for such a thing) is a result of my job, having seen so many women with misbehaving or missing body parts. Which turned out to be quite handy on the Bad News day, because otherwise, how on earth would I have made the right choices? How would I have grasped, even, that there were real choices to be made? It’s not like you’re in a logical state of mind at such times.

This is how the surgeon’s assumptions emerged, as she sat opposite me with compassion in her eyes, having just told me about the too-numerous cancer cells and the impending mastectomy.

'Look,' she said, 'don’t worry. I can fit you in quite quickly, and we can do it all at once. We do the mastectomy and the reconstruction on the same day.'

She went on to explain how they take a bit of your back shoulder muscle and bring it forward to form a new breast. I had never heard of this technique before and I still can’t quite visualise it, but it sounded alarming.

“Hang on a minute,” I said. (Having swallowed the brief tears when the bombshell hit. There’s a time for everything, and this was not the time for wailing, I realised. This was my chance to ask questions and get information.) “What if I don’t want a reconstruction?”

The surgeon looked taken aback. 'Well, of course, that is fine too. There are many women who don’t have reconstructions.' (Later, I gathered that this is mostly elderly women – I wonder whether 80 year olds get offered reconstructive surgery?)

'I just thought,' she said, 'you are young…'

But if I just had a mastectomy without the faff of reconstructive surgery, she could fit me in quite quickly. 'It’s quite a simple operation, really,' she said. 'It doesn’t take long. It’s the reconstruction that takes the time.' She leafed through her diary. 'I could do it in two weeks’ time, on the 30th of May.'

'Yes please,' I said. 'Put me down.'

She wouldn’t take my word for it though. 'I’ll pencil you in,' she said, 'but please think about it carefully. We’ll give you all the information.'

Her explanations were alarming. The shoulder-muscle scenario was least appealing of all.

'Won’t I want my shoulder muscle?' I pondered aloud. 'Like, when I go swimming for example?'

Ah, well, if I swim a lot, perhaps this is not the wisest of options, the surgeon agreed.

'The other thing we can do,' she explained, 'is use the fat from your abdomen. It’s like a tummy tuck operation. That does take much longer, it’s an all-day operation.'

Which fat, exactly, are we talking about here? I asked her. We laughed. (We did.) Well, yes, perhaps I don’t have quite enough of it. (I’m telling you, I don’t. And the little fat I do have, I don’t want to lose. I’m not asking for sympathy here.)

'In that case,' she proceeded, 'we take it from your leg or from one of your buttocks.'

I was sent home with a 94-page booklet and the instruction to telephone once I’d made up my mind. Well, my mind was firmly made up before I got halfway through. I salute those women who go through any of these reconstruction scenarios. Recovering (physically) from a mastectomy is bad enough but only takes a couple of weeks. Recovering from reconstructive surgery can take the best part of a year, depending on the details.

And those details are not for the faint hearted. In implant is perhaps the simplest, but an artificial chest just isn’t for me. The list of benefits (can give a good appearance; leaves less scarring; operation lasts only 2-3 hours) wasn’t half as long as the list of risks and limitations. It wasn’t just the risk of infections or leaks or the fact that you lose all sensation in the breast. There’s also the likely need for future surgery to stop you being an old woman with one young perky breast. I’m thinking back to my past hospice patients with their natural one-sided looks. Perky Implant would definitely have stood out.

Then there’s that worrying shoulder muscle option. It affects your shoulder strength and your ability to play some sports (aaarghhh). Plus, the booklet explains, your breast will be made of muscle so 'some women notice their reconstructed breast twitches or jumps when they cough or sneeze.' (Double aaarghhh).

How about the tummy tuck option? Or the Buttock Tuck option? “You will have an oval-shaped scar on your breast and a scar on your bottom,” the booklet tells me. Plus, “one buttock may be slightly smaller than the other after surgery.”

This puzzles us. 'Why,' my husband wondered aloud, 'would you want to make one part of your body smaller so you can make another part bigger?'

Don’t get me wrong. I really, really understand why women choose any of these options. The thing is, it should be a choice. And who is in the right frame of mind to think all this through when they have just been hit by bad news?

It is, of course, possible to choose any of these options even years after the mastectomy. If I were to change my mind in ten years’ time, I am told, the NHS would welcome me and merrily cut into my buttock to make me a fancy new breast, free of charge.

(Let’s assume so, anyway. We won’t go into all the ghastly things that could happen to the NHS after next week’s general election.)

Anyway, I was on the phone to the breast care nurse just hours after getting home from the appointment.

'I’ve read the booklet,' I said, 'and I haven’t changed my mind. No reconstruction. Please put me down for surgery on the 30th of May.'

'Actually,' she said, 'I think you are making a wise choice. It’s not easy, you know, having a reconstruction. Women have so many problems with it.'

Why, I still wonder, do they only tell you that after you’ve declined reconstructive surgery? Is that to make me feel better about my decision? Or is it true? In which case, shouldn’t all women be given the full picture?

One day, I may tell you what it’s like to live with an unreconstructed flat chest. But for now, let’s crack on with the lumpectomy-to-mastectomy story.

 “I am really quite devastated,” I wrote that day. “I spent a long time looking at myself in the mirror from all angles. I know I will live very well without it, but this is a loss that has to be mourned.”

17 May 2014: Questions

“Questions are parading in my brain. Are my T shirts and clothes going to be too low-cut or tight fitting? Will I need a whole new wardrobe?”

(Answers – Too low: yes. Quite a few outfits have been taken to the charity shop or made to be slightly less revealing. Too tight fitting: no. My prosthesis is remarkably convincing.)

“And this question may seem strange but is surprisingly important (and I haven’t found an answer in my growing stack of leaflets and booklets, so I must ask someone): What are they going to do with my nipple? Throw it in the bin?”

(I never dared ask, but I think the answer is that they sliced it up and put it under the microscope, after which, presumably, the whole lot was incinerated?)

19 May 2014: I don’t want to know everything

“My body is in a state of high alert. Fight or flight mode. Be careful, anything can happen like a bolt out of the blue.

My husband came home and reported how someone had offered help (along with so many others – one of the blessings in recent days, all these wonderful people wanting to help me). Unfortunately, the reported suggestion sent me straight into a wholly unexpected panic.

She would, my husband explained, be more than happy to come wig-shopping with me.

I don’t think I have ever, ever walked out of anyone talking to me. But now, I found myself suddenly choked up. I fled to our bedroom, just as my husband was expanding on various bits of advice he’d received about hair loss and wigs. My son was next door and if there are any people who should not see or hear me cry, and certainly not through closed doors, it’s my children.

So when my husband followed me he found me sobbing, because this was just one step too far ahead. I am struggling to come to terms with the loss of my breast. The thought of losing my hair as well, even temporarily, had of course fluttered through my mind, but I had pushed it away. I had even said this to the surgeon, when she confirmed that I would indeed need chemotherapy (I’d asked): ‘Let’s cross that bridge when we get there.’ She agreed and did not mention chemotherapy again.

I am truly grateful for these lovely people who offer such valuable help. But I surprise myself, because here is a first: I do not want to know everything.

It won’t be long before I will want to ask the doctors these very questions, thinking ahead, planning ahead, gathering knowledge. Knowledge, for me, is power and control – a definite coping mechanism. But right now, I am simply overwhelmed and I have to consciously turn away from facing the full impact of these cancer treatments.”

[Indeed, it didn’t take long. Within a week, I was bursting with questions about chemotherapy, and extremely upset when the breast care nurse wouldn’t answer them.]

“And yet,” I proceeded to write, “I there are many blessings. I am enormously grateful for my sick note. I am lucky that I can afford not to work, unlike so many other cancer patients who suffer real financial hardship. I am feeling much stronger, physically. Less tired.

Here I am, the house quiet, the children at school, the weather smiling, feet up in the garden, coffee, fragrant flowers, dozens of supportive emails on my iPad. When else do I have such luxury? Nobody expects anything of me, and crucially, I am beginning to let go of expectations of myself.

I am truly blessed and definitely not unhappy. Life is beautiful.”

24 May 2014: Nightmares

“I fell asleep again on the sofa and woke up choked with tears. I have such vivid dreams. Unusual, as I can go for months without dreaming.

This time, my younger daughter had been taken by someone we thought was trustworthy, and murdered. I had to break this hugely distressing news to others. To my older daughter (me sobbing, she soon joining in): ‘Your sister is dead. She’s been murdered.’ To my son, ditto, but he walked off: ‘I don’t want to hear this. Don’t talk about that.’

No prizes for guessing what it all means. I store this one away along with the dream of the catastrophic loss of a bicycle wheel preventing my onward journey. Then there’s the dream in which I finally arrive at the swimming pool, having finally gathered enough strength to go there, only to find that everything has changed and I can’t swim in it. Not only that, but when I want to drive back home I can’t find the care and suspect I’ve parked it in the wrong place so it’s been towed away. Once again, I’m stranded.

My dreams are full of loss, bad news, things not as I had trusted they would be, loss of control, overwhelming life events and disasters.”

The next day, I went away to the countryside for a couple of days. On my own.

“I need space to take stock,” I wrote. “To breathe, to cry, to write, to let my life settle in my heart in preparation for the next step. I cannot do this at home when the children are around.”

Quite right I couldn’t. This is what happened after that ghastly murderous dream. An almighty wail in my husband’s arms, ‘I’m fundamentally fine about losing my breast, really I am, I will get used to it, the scar will become part of me, but right now I’m frightened of having my breast cut off, I’m scared of what it will be like, I’m holding it together all day long, every day, I’m so positive to everyone and it’s not a lie because I really do feel positive, but it’s so much to adjust to, it’s all bursting out of my head…’ Well, this wail went on for five minutes – and in burst our younger daughter and Bear, bouncing onto the bed in great excitement: ‘It’s Bear’s birthday! It’s Bear’s birthday today!’

So that was the end of that, a sudden ceasing of my crying, because let me tell you, nothing but nothing must put a damper on such a long-anticipated event. Certainly not mum’s cancer.

26 May 2014: Worries about my mother

During that turbulent week, my sisters and I had become seriously worried about my mother. These concerns were not new, but they gained new urgency.

My mother had been getting frailer and more confused for some years. There was the cancer diagnosis four years ago, successfully treated but leaving her shaken; then a diagnosis of vascular dementia the following year. She had been living in a lovely nursing home for the past two years.

This feeling gathered poignancy because my mother’s older sister died just as I had my lumpectomy. This was not surprising (she, too, had been very frail for years), but neither was it expected. I was so very sorry I couldn’t make it to my aunt’s funeral. In the Netherlands, funerals usually take place within a week.

And that was exactly our worry. 'Goodness,' my sisters and I said at the time. 'If that had been mum…'

What worried us was not only that I might not make it to my mother’s funeral if she were to die as suddenly as my aunt did, but also, that I might not be able to support her or my sisters if such support was ever needed. Choices about palliative care or about funerals: I might not be up to any such discussions.

So we arranged to have a long Skype session, talking about such things.

But then, my mother seemed that she took yet another turn for the worse. Nothing specific, nothing you could put your finger on, but both my sister and my mother’s own younger sister felt it was significant. “I wouldn’t be surprised,” my sister said, “if mum died within the next few weeks.”

I had planned to visit my mother in a month or so, once I’d recovered from the mastectomy. But now, that just didn’t seem good enough. Plus, I realised, the talk my sisters planned to have via Skype should really be shared face-to-face. You can do facts via the internet, but you cannot easily do emotions. We needed to do both.

So, on the spur of the moment, I booked a flight. I’d fly out on the 27th of May, spend the evening with my sisters to talk everything through, then go and see my mother the following morning and fly home in the afternoon. Surgery was due on the 30th, so that would leave me with just one day to go into hospital for my pre-op appointment, organise my younger daughter’s birthday party (to take place the day after surgery, when I may or may not be out of hospital – several people were ready to step in to help with the party, but presents still had to be wrapped and a truckload of sweets still needed to be bought).

Oh, I was fragile at that time. The slightest act of kindness, the lightest act of being inconsiderate: each of these could shatter my self-control within a split second, and I’d be in tears.

28th May 2014: Heartbreak

This was possibly the most difficult day of my life. I don’t quite know how to convey it, but perhaps my diary entry from that evening is a good place to start.

“To say I’ve been to Holland and back does not do justice to the road I’ve travelled since yesterday. I am so exhausted, my bones protesting weakly that they hurt and no longer wish to hold me up, my head so full that it feels ready to explode, my heart overflowing with so many profound emotions that I don’t know where to start…

I had a beautiful evening with my sisters. We talked about everything. Our emotions; our views on end of life care; all possible scenarios – when and how and why to stop treatment, what dying looks like, what to look out for, what medication is available. We planned the funeral in some detail.  We opened a second bottle of wine.

At the end of that evening, I felt as if I was free to be absent now. My sisters would cope. I would be upset to miss mum’s final days or to be unable to help with the funeral, but it was a possibility, and so be it.

This morning, the nurses rang to say that they had found mum on the bathroom floor. She had taken a turn for the worse. We headed for the nursing home straight away.

And when I saw mum, I saw a dying woman.

It could be days; it could be weeks; but it wouldn’t be months. She could barely get out of bed. Her eyes were distant and had that end-of-life quality. She was muddled in her speech in a way that is quite different from dementia-muddledness: muddled like someone who is beginning to slip away.

Everyone, including the GP and the nurses, agreed.”

I remember this so well. The way they sat us down, trying to find a tactful way to help us understand that this was the beginning of the end. I needed no such help. It reassured me enormously that the GPs suggestions about my mother’s medication matched my own. The GP was clearly experienced in palliative care. Thank goodness.

I expected that my mother would slip into an ever-deeper sleep, and I expected that she would die within a couple of weeks. It is always hard to predict and some people hang on for weeks stretching into months, but it would surprise me if that was the case with my mother.

“So here,” my diary continues, “was the dilemma. Should I stay, or go back to London as planned? Should I go in for surgery in two days’ time? I couldn’t. I do not want to have such a serious operation knowing that I would be unlikely to be there for mum and for my sisters; knowing that I may miss mum’s funeral.”

What happened next was this. I presented my dilemma to the GP.

'I need to go back to London this afternoon because I’m having a mastectomy the day after tomorrow…' I started.

She looked at me as if she had mis-heard. A mastectomy?

'Yes, that’s right.'

'Goodness, that’s a big thing.'

'I know. It is.' (Don't say anymore, I thought. I'll start crying if you do.)

She agreed with my feeling that my mother could die soon – within weeks, if not days.

By now, it was 1pm. I had to leave at 3pm to catch my flight back to London. By a happy coincidence, it was a Wednesday, the one day when my surgeon doesn’t do operations but sees her patients in clinic. So I telephoned my husband and asked him to try and get hold of her. He chased the surgeon’s secretary, and within an hour, my surgeon rang me back.

It was rather surreal, sitting in my mother’s living room with my distressed sisters next to me and the nurse almost open-mouthed at the horror of my situation, discussing my impending mastectomy on the phone.

My surgeon was wonderful and utterly reassuring.

'Irene,' she said (she was one of the very few staff who always pronounced my name correctly), 'you have time. It’s no problem. I’m looking at my surgery lists and I could do it on the 10th of June. I’m pencilling you in.'

She explained that my breast was not cancerous but pre-cancerous. Whilst it has to be removed, there really was no rush. The sentinel lymph node had a 4mm cancerous deposit. Around 50% of women with cancer in their sentinel lymph node turn out to have cancer in other lymph nodes too, so they had to come out, but a few weeks here or there would not make a difference.

She also added that I will definitely be offered chemotherapy (nobody had given me a firm answer on that question), because, she said, “you have a cancer that wants to spread.”

So there was my decision. I would not have the mastectomy which I had been preparing my body and my mind. I would fly back to England, gather my things together, look at readings and music and a funeral outfit. Then I’d come back my mother in about five days’ time, and simply stay with her until she died.

After that conversation with my surgeon, I said goodbye to my mother, knowing I may not speak to her again.

And after all that, when the nurses had left the room, I sat down with my sisters and cried.

31 May 2014: The haven’t-had-a-mastectomy day

“I should have had my mastectomy yesterday. I should have woken up in hospital minus a breast and plus tubes and drains and bottles. Instead, I am sitting in bed at home with my morning cup of tea and the debris of my younger daughter’s birthday presents scattered around.

This is a very strange thought. I feel like a skiving school child who knows she should be sitting in lessons but is bloody well not going. It’s a slightly scary feeling. I am not the skiving type.

There is something good and positive about this, although I am not sure I can quite put it into words yet. I’ll try.

It feels as if I am much, much more at peace with the prospect of losing my breast. My breathing space in the countryside, full of solitude and reflection, has played a part. My openness with friends, family and even vague acquaintances about my impending mastectomy, and their subsequent support, has inspired and sustained me.

This truth shines ever brighter: Losing my breast won’t change my core. It doesn’t change who I am It may even make me more truly and deeply myself, because I will have arrived at a new level of self-acceptance.

My mother dying does touch my core. The mastectomy pales into insignificance. It has simply become something to be fitted into my diary. I am looking into the future, wondering how and when I will best cope with the onslaught of surgery. But the mastectomy doesn’t feature in my consciousness quite as much as my mother dying.

My main concern now is what I should do if mum does not die within the coming week. Postpone my treatments further? When does such delays begin to compromise my health? I need to talk to my surgeon about this, but even then, how much can I trust her when she says it’s fine?

I was told the lump was probably fine, and it wasn’t.
I was told the lymph node looked fine, and it wasn’t.
I was told the lumpectomy would suffice, and it didn’t.
I am fully expecting the cancer to have spread to my other lymph nodes.
I no longer trust my healthy body and I feel very strongly that this cancer may well have spread somewhere else.

Such are my thoughts and worries. All I can do is hope and trust that things will work out OK. Either mum dies soon, so I won’t have to make more difficult choices; or she doesn’t… Perhaps a day will come when I am at peace with the prospect of not begin there when she dies.

I have spent the past few days reassuring everyone that I will be OK, the cancer will be successfully treated, the delay doesn’t matter (and isn’t it a positive thing, the fact that a delay is neither here nor there?). I do believe that.

I have to believe that.

But of course there is the niggling worry.

Right now I’m thinking what a luxury it would be if I could focus on my treatment again. Mum dying is so big, so very big, that an ability to focus on my own health and nothing else seems an almost enjoyable prospect!”

1 June 2014: Packing for a funeral

“I’ve spent the whole day faffing around. I don’t know how long I’ll be gone. I have never booked a single ticket to Amsterdam before.

I am selecting and packing a funeral outfit, and it is devastating. On one level I can be practical and talk openly. I’ve told the children everything. My older daughter and I have been discussing, without sentiment, what music she could play at the funeral. The children have posed willingly for a photograph to say goodbye to their grandmother, holding signs: Dear Oma, thank you for everything, we love you always.

(That photograph was pinned up on the wall above my mother’s bed, and was eventually buried with her.)

“But I cannot get on with this packing. It’s evening now and I still haven’t starting putting things into my suitcase. Piling up my clothes, thinking through what I need – utter comfort but also presentability – and I still have to lie down and rest regularly, I still haven’t completely recovered from the lumpectomy. It’s heartbreaking.

My impending mastectomy is completely gone from my focus for distress. Losing my mother is all my mind can contain.”

2 June 2014: At the airport - again

“Gatwick Airport teemed with holiday makers. The young woman serving me at the duty free till was so bright and cheery, it hurt my eyes and ears.

Helloooooo! How are you feeling today?!

As it happened, I was feeling on the verge of tears. Less than a week ago I was sitting at this same airport writing notes about my mother’s funeral, expecting to be back the next day in preparation for my mastectomy. Today I felt overwhelmed by emotions I couldn’t even name. How do you describe the feeling that accompanies leaving home knowing that when I return, I may have buried my mother and immediately face major surgery? And my mother isn’t even dead yet?

I should have said Fine, thanks but couldn’t, so I said in a voice I hoped was as glum and off-putting as possible, You don’t want to know.

She scanned my item and exuberated onwards, Are you going on a nice holiday today?

I should be detached from such meaningless small talk, but it hit me in the plexus. Well, no, I replied, only to be given a parting shot: Enjoy your trip, have a WONDERFUL time!

I walked to the gate in tears.

I cannot do small talk. I am no use as a friend. I am poor company. Whenever I ask someone How are you? I regret my question, because when people answer, I don’t hear them, and if they go on and on, I wish they’d be quiet. I cannot follow anyone else’s train of thought; I can hardly follow my own. I can’t read a book either, as it requires me to keep a plotline in my brain.”

5 June 2014: The impossible choice

“Mum’s dying is slow,” I noted down. “I think she needs it to be.”

It won’t go into the deeply private sphere of a family gathering round at such a time, but anyone who has been there will know that you are in a bubble where the outside world has somehow disappeared. My overriding desire during that time was for my mother to be able to leave us behind in peace. I knew this couldn’t, and shouldn’t be rushed (although, alarmingly, the possibility of ‘speeding things up’ was mentioned by the nursing home staff).

But of course there was also the pressure of my looming surgery. It had been pencilled in for the 10th of June.

What to do? What on earth should I do?

I had not expected my mother to live this long, so here I was with an on-going dilemma. I wanted my mother to make her final journey in her very own time, however long that took; yet I also wished that it was over very soon.

Postponing surgery would mean continuing that pressure and uncertainty. My sisters and I went through the calendar in our minds, every day, several times a day. If she dies on this day, we could have the funeral as early as… or as late as… If surgery was on this day, I could be back as soon as…

It was truly awful.
I wrote:

“I spoke to my surgeon the night before last and she gave me what felt like Sophie’s Choice. The surgery list would be fixed the next morning. She could fit me in on either the 10th or the 17th. (There was no mention of possible further delays, and in any case I had already decided that I did not want any further delays.) She would need to know my decision the next morning.

What if I decided to go for the 10th, and my mother died just before it? Could I cancel a the last minute?

Well, no. My surgeon was quite firm about this. “I’ve got six patients to fit in and I can’t afford to lose another surgery slot.”

My sisters raged about this, but I don’t. I understand it. Of course they can’t have me as a tentative occupier of the surgery list for weeks on end, allowing me to cancel it several times and thereby denying another woman (who will need it as much as I do) the chance of surgery on that day.

But oh, I cried. It was the most I’ve cried since the first suspicion of cancer. I sat on the bed of my sister’s small guest room, crying and crying and crying.

I knew I had to have the operation and I needed to have it soon. I no longer feel despair or even sadness at the thought of losing my breast and cutting into my lymph nodes. It is as if I have already arrived at a new self image, a new sense of who I am. I am a woman who is coping with cancer, a woman who will have lived through a difficult time.

Having my right breast now seems strange, as if she has overstayed her welcome. I can already see the scar underneath. My breast shouldn’t be there.

This, perhaps, has been one of the gifts of mum’s dying at this time: it seems to have brought me to a much fuller acceptance of the mastectomy.

So I had already decided that I may just need to stick to the 10th of June, regardless. I rang the hospital the next morning to tell them this.

But oh, the heartbreak. I am reconciled (I think!) to the distinct possibility that I am not in Holland when mum dies – I believe that spending a week at her bedside is enough. It is alright.

But I would be utterly, utterly devastated if I missed the funeral. Opting for the 10th of June would mean that I will definitely have to travel to a funeral soon (too soon) after major surgery. Opting for the 17th would mean continued uncertainty and pressure, with me wiling mum to die, perhaps before she is ready.

I rang my sister and cried into the phone; she joined in.
I rang my husband and wept all the way across the North Sea.

In the end, the choice was clear. I cannot postpone things any longer, life is as it is and I have to put my health first. Those closest to me agree. I am touched by their worries and concerns. They have been as upset as I am about my dilemma. I have heard both my sisters say that their worries about me outshine their worries about mum.

We have learned from the funeral director that the Dutch maximum of six working days between the death and the funeral may be extended by three working days in exceptional circumstances (we would need special permission from the council). The funeral director agreed that my circumstances are indeed exceptional.

So here we go again… is mum dies on… then we can have a funeral on…

But in the end, I decided that I simply have to accept there would not be a funeral before my surgery, and that I’d have to prepare myself to wake up with scars and tubes, knowing that I’d have to travel very soon. So be it.

Now, strangely, since that decision was made, I feel so calm inside. It is as if I can give mum the space and all the time she needs to die, and myself the space to be with her without worrying what I should do. I know what I will do. I have booked my flight back to London for Monday 9th June. I will spend each day, every day, all day, with mum.

If she dies, I will sit with her, wash her, be still with her.
If she lives on, I will sit with her, care for her, encourage and love her; and then I will say my goodbyes.

I think it will be OK for me to leave her then.”

6 June 2014: Miles to go before I sleep

I have sent another email to a large group of friends, family and acquaintances, updating them. There are so many responses pouring in, people writing with such open hearts, sharing their love but also their own intimate experiences of illness, death and dying.

One friend sends me a well-known piece of poetry that hits me afresh, triggering fresh tears of beauty and recognition…

The woods are lovely, dark and deep.
But I have promises to keep,
And miles to go before I sleep,
And miles to go before I sleep.

Oh, the wrench and pain of leaving my wondrous wood. I am in a fragile but intimate bubble with mum, with my sisters, with mum’s close family and friends. But I must leave it on Monday.

I have miles and miles to go.

7 June 2014: Final moments

Oh, so many precious moments. Thinking back to that time, the overriding feeling is one of gratitude. Being close to dying is a privilege, it is beautiful, but boy, it’s hard. It’s heartbreaking. It’s exhausting.

“To say each day is an emotional rollercoaster is nothing short of an understatement,” I wrote among the pages and pages of descriptions and reflections. “With all my experience of watching people die, I have never been this close. I realise now that I’ve seen people’s bodies die, but I have never known my patients well enough to appreciate what dying really involved. It is not just the closing of a body, but of a life.”

I have described my final moments with my mother in a blog post just before Christmas. I’m not going back there now, but if you wish, you can read it here.

9 June 2014: The poem

I travelled from Schiphol to Gatwick Airport with a pen in my hand, wanting to catch the indescribable. I tried and failed. Instead, something like a poem emerged. I’ve never written a poem before.


eyes of a newborn
for live and love and bonds
fixing your gaze

a baby’s smile
here you are
here I am

she scatters your wordly worries
she lightens your heavy heart
cocooned, freed
you smile with her, your soul smiles,
the stars, they smile

these are her eyes
my dying mother
this is her smile

where are her troubles now, her fears?
where mine?
the sky shines briefly through her clouded mind
eternity lifts her face

my eye in her eyes
my lips in her ear

dear mother, you are dying
I have to say farewell
my child, I know, I know
a trembling hand, so old and weak the flesh
finding mine
let me kiss you one last time

her eyes, they hold me
her smile, it soars
she whispers
thank you
all is well, dear child
I will fare well
you will fare well
all will be well

her eyes are closing
her muddled mind
her broken body
the barriers of time and space

the circle is closing
light and life and birth and death and dark
and light again

and in that moment of farewell
we know
she will go

I turn
I walk away
from her fragile fading body
towards her radiant love

here I am, my dear mother
here you are

12 June 2014: The mastectomy

I had been writing about my mother until the moment I was called into theatre, but I hadn’t finished it yet.

“It is now two days later. I’ve had my mastectomy and I am back home. It is 9am, I’m sitting up in bed, reasonable lucid, drain beside me. I will describe all that another time. First, mum. Thankfully, I can still remember every word, every look, every gesture. It has sustained me.”

There are pages and pages of memories before I finally got round to describing the surgery, later that evening.

“The mastectomy is fine. Really, it is. I have worried, waited, wondered, postponed, worried some more. I fully accepted that it needed to be done and in the end it was simply a question of getting it out of the way as quickly as possible.

I remembered Owl’s wing the night before my early morning hospital admission, and even that needed to be fitted in (not the profound, moving, emotional ceremony I’d dreamed up weeks ago), quickly upstairs to the sewing basket, torn loose the stitches, snip snip, done. Put him in the bag before I forget.

That’s exactly how I felt too. Get me to the hospital before I forget.

I was glad to have my name called so early. I did cry a little when my surgeon came in to see me, because she is compassionate and she knows about mum. Throughout my day and a half in hospital, I cried only when I spoke to a nurse or other staff member about having had to say goodbye to my mother.

I didn’t give the impending surgery a second thought. I was out like a light (I do find that extraordinary) and woke up in the recovery room several hours later, minus my breast. I tried to peer down my hospital gown. I saw a neat-looking long plaster across my flat chest. It looked fine.

But oh, I felt so vulnerable in that hospital bed. Back on the ward, I had to ask the staff so many times to keep my curtains closed, because I didn’t want to see any strangers and I didn’t want any patients or visitors to see me. I wanted to crawl into a little hole and weep and weep and weep, with relief or sadness or release, I don’t know, probably everything combined.

I had told my husband not to bother visiting me until evening time (remembering how I felt after the lumpectomy, happy to just sleep and sleep and not needing to see or talk to anyone). But at 2.30pm, freshly arrived on the ward, I rang him. Please come, I cried. Come now.

He did. He came and half-sat, half-lay on the bed with me and I just sobbed onto his shoulder. It was such a comfort to have him. I felt so very vulnerable and the opposite of strong. Nothing to give but oh, in such need to receive. Just half an hour of his comforting presence, that was all that was needed.

I just lay in bed quietly for the rest of the day, hiding from the world. The nurses were kind. The surgeon came to see me, kind, reassuring. All went well. Any pain?

Well, yes, I realised. But isn’t that normal? It never occurs to me to ask for painkillers. I didn’t even take painkillers for childbirth or tooth fillings.

‘You must!’ said the surgeon, ordering the nurse to give them to me regularly and not wait until I asked. (‘She won’t ask.’) And, ‘If you’d seen us in theatre Irene, if you’d seen what we’ve done, you’d understand why you need painkillers.’

The children came for just ten minutes. I found it hard to cope with the younger one’s bounciness, but she did make us all four of us laugh when I showed them my bandaged chest and she remarked, ‘Daddy will never kiss you again – [pregnant pause] – in the same way!’

Getting used to my new self is quite a process. Last night, I looked at myself in the full length bathroom mirror and found it quite startling. It’s one thing looking down my empty chest inside a dressing gown, but quite another looking at myself in full glory from the front, the side, up and down and up and down. I had to call my husband in, Come and look with me. We have to get used to this.

Another little weep on his shoulder, another step towards acceptance.

‘Looks don’t matter, do they?’ he said. ‘You will just get used to it. It will just blend in, your scar.’

Yes it will. In a year’s time, it will seem strange to have two breasts.”

[It won’t. I’m still startled, on occasion. But that’s another story.]

13 June 2014: Mum is on the inside

I was in constant contact with my sisters. Hallelujah for social media. It’s extraordinary how close you can feel these days, even when there’s a sea between you.

My sisters reported that my mother was now barely rousable and that they were planning to start night watches. I asked them to send me a short video.

Soon afterwards, there she was, on my screen. I watched and wept and watched again and wept some more. She was so close to death. Not long now. I emailed my sisters: Thank you, thank you, watch over her, she is dying, we are counting in days, perhaps even in hours…

I loved and trusted my sisters and my aunt, it felt right somehow that I was here and they were there, watching and waiting and caring. But oh, how my heart ached.

In my London bedroom, my sanctuary, I kept the candle burning by my mother’s photograph.

A friend came round briefly. I told her a bit about the surgery and then I talked and talked about mum. Parting, she commented, ‘I can’t believe you just had a mastectomy and all you talk about is your mother.’

But my mastectomy didn’t make me weep. My mother did. It was so obvious to me. I told her, My mastectomy, that’s just on the outside. My mum is on the inside.

14 June 2014: My mother died today

“Mum died today, at 12.50 Dutch time. My younger sister was with her. And in a way, so was I, because she rang me just a minute after what she was sure had been mum’s final breath, and we sat with her during those ultimate moments when time stops.

There is much to say, and there is nothing to say.

I cannot write it all down, not the blow-by-blow account. Perhaps there is no need.

Four days ago, I lost my right breast to cancer.
Today, I lost my mother.

There is no doubt in my mind which if these is the significant loss. One is only skin-deep; the other touches my soul.”

And that is how I started this blog three days later.

Painting by my mother, which we used for her funeral cards

 2 May 2015: So that was last year…

Dear devotees (and if you’ve got this far, you definitely count as a devotee), you are up to date. If you have followed my blog from the start, you know the rest of the story.

And if you’ve managed to read through all this, you may also understand why I don’t want to go back there during May and June. I have moved from coffee to wine; it’s exactly midnight. Time to stop.

From now on, I promise, it will be onwards and upwards. I shall look toward the future. I shall stop sitting at my computer all day, typing up last year's misery and heartbreak, and go back to getting fit for the Moonwalk.

Thank you for sticking with me.

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