Sunday, 26 April 2015

121. A cog in a machine


26 April 2015

I am a cog in a machine, and it's a tiny cog. Insignificant, even.

My pre-operative appointment involves a meeting with the pre-operative nurse (to check my height, blood presuure, and the presence of a responsible adult to look after me on discharge), the breast care nurse (to give me yet more leaflets, this time on how to reduce the risk of lymphoedema and what kind of shoulder exercises to do after surgery) and a very young doctor (to take my blood, check my alcohol intake and explain the whole procedure once again - he was actually the most personable of the three).

I sit in the waiting room for an hour before each of these short meetings. It takes all morning. I am calm, in control, competent. I make no fuss, ask only sensible questions, smile, make a few jokes. I act lighthearted because they act lighthearted; I act unconcerned because that is the message I get.

This is routine.
This is not a problem.
This is small.

But when I come home, laden with leaflets and a pink card to take in for another lot of bloodletting next week, it occurs to me that in all my contacts with doctors and nurses so far, not a single one has asked me how I feel. They hardly looked at me.

I am a small lump that needs to be removed, so that I can be handed over to the next lot in the hospital machine.

I am sure this is good news in itself. It is how I present myself to the outside world, before others get a chance to get overly upset or even concerned: Don't worry, this will be fine, this will be over and done with in a couple of months' time, come September I'll be back into the swing of things as if nothing has happened.

When I tell my husband how I was never asked how I am, my older daughter listens and says, "Go on then Dad, you've got to ask her!"

I explain to her that I am talking about hospital staff. Family and friends have, on the contrary, been extremely supportive and ask me how I am all the time.

[They did. You can read about that here.]

"Well," my daughter reasons, "you don't need the hospital doctors and nurses to ask you how you are. Family and friends can do that. Doctors and nurses just need to make you better."

Perhaps she is right. And I completely trust the hospital staff to do just that.

But then I text my Knee Owl Friend to ask how her pre-op appointment had gone (on the same day). Since we are both the lucky owners of an owl to help us through it (and mine had come along to all my appointments, peering prominently out of my handbag) I added...

"Owl survived his pre-op day although there was a lot of waiting involved and not a single person asked him how he was..."

What is it with this owl? I had told my husband and daughter exactly the same thing and was absolutely fine. But when I write how Owl was ignored, I am suddenly choked up.

Poor owl, poor owl. No-one asked him how he was. No-one noticed him.

No-one noticed me.

They talked to me and measured me, but they didn't see me. They noticed the outward competence and responded to it. They didn't see the inward shaking.

I must arrange to go and see my lovely GP.

To be continued...

Friday, 24 April 2015

120. Knocked sideways


24 April 2014

Only 36 lengths this morning. I usually swim 50. It is now quite clear that without at least an hour's bed rest in the afternoon (two hours is better) I barely make it to the end of the day.

On the positive side, I can see the enjoyment in this. I imagine this is the key to a contented old age: accepting life's limitations, accepting life's changing rhythms.

It is only when I get frustrated by what I can't do that life is hard.

I just need to grasp that the mornings are for activities (and currently, I can do a lot, I have enough energy in the mornings to make me wonder whether I might in fact keep going all day - until I get caught out in the afternoon, exhaustion suddenly descending like a heavy blanket).

If I can simply accept that afternoons are for rest, and announce it - to others, but also to myself - and plan around it, then it is quite lovely. The bliss of sinking into bed, resting my very weary limbs on the warm electric blanket, is glorious.

Yes, on the positive side, I think: of course. You start life needing rest and sleep; no-one would dream of trying to keep a toddler awake in the afternoon because there is so much more playing to do. The toddler's playing is intense, but so is his rest.

In older age or poor health, maybe you just go back to that rhythm of needing more rest, shorter sleeps in the night perhaps, added lie-downs during the day.

But on the negative side I think, Hey, I am not old.

It's fine for now, I am on annual leave, I only have my family to be responsible for, I don't have to worry about work.

But my standards are high and I feel guilty, I already feel guilty about time off work. The guilt is entirely mine. People at work couldn't be more understanding, all encouraging me to take the time I need.

I have read up about cancer-related fatigue and don't think this is it. I hope it isn't.

Cancer-related fatigue seems to be more associated with advanced cancer, or it could be a sign that the cancer has caused changes in hormones for example. That would be worrying. The symptoms don't quite match either. Unlike cancer-related fatigue, mine does seem to improve with rest. Yet it seems too overwhelming and too physical to be purely due to emotional distress.

But I think I am still deeply distressed.

I have hidden it, I am glossing over it, because of the firm belief that mine is an early cancer that will be cured. Outwardly, I am incredibly positive. And I still have this sense that my life is so charmed and blessed that things cannot possible go wrong.

But they do go wrong. I do have cancer.

Perhaps that remains the deepest cause of my distress, the loss of control, that frightening realisation that serious illness can happen to me.

Perhaps I remain so tired because I have lost my grip on life. If cancer can happen (even a cancer caught early), then anything can happen.

Tomorrow is my pre-operative appointment and I am actually quite frightened. I have never had an operation before. I have never been helpless before.

I am helpless now.


Thinking back to that time, I see myself in a bit of a haze. There I was, unable to function properly, terribly tired, spending lots of time hiding under the duvet. It was a physical thing, that exhaustion. I didn't have the energy to focus on anything but myself (and thus, I couldn't string any sensible work-related sentences together, but I could write endlessly about my own predicament - no wonder I started this blog in the end, it was all I could do). But it wasn't just a lack of mental energy, which would have been understandable enough. Come the afternoon, my skeleton simply wouldn't hold me up.

But physically, nothing had changed from the previous month. Early cancer doesn't give you any symptoms. You feel fine, you feel fit, you feel strong. The only thing that had changed was my knowledge of the cancerous lump. That was enough to render me utterly incapacitated. For months.

This is what amazes me most, looking back. It was one of the most important lessons. 

I had always seen myself as a strong person, mentally. Mind over matter and all that. I know the theory of distress, of grieving - and yet I didn't really know it. I didn't know that having an understanding of the theory is no help at all in practice.

You still need to go through the exhausting and lengthy process of psychological, emotional and social adjustment.

Now, a year later, having endured months and months of grueling treatments, I actually have a good physical excuse for being tired, and yes, I am tired. But it's nothing like the tiredness of a year ago. I can function, provided I am sensible about rest (which often I am not... what am I doing here, typing these diary words into a computer after a long day of work and family?). The tiredness is mostly physical (I think), and that makes it much easier to get on with. When I'm vaguely rested, I can do everything again - including writing sensible work-related sentences.

Here's another thing I've learnt (and I'm glad I kept that diary, otherwise I would have forgotten the extent of my distress in those first weeks)...

There is no straightforward relationship between the severity of the illness and the levels of distress.

Occasionally, when I was in the midst of chemotherapy, I'd come across a recently diagnosed woman who "only" needed a lumpectomy and a bit of radiotherapy. No lymph node involvement, no sign of cancer beyond that little lump.

"Huh!" I might be tempted to think. "That hardly counts! You have it easy!"

But then I remember... that was my own position, during the first six weeks. Everyone, including me, thought a lumpectomy and a bit of radiotherapy would suffice. End of.

And look what state I was in.

You cannot predict how you will respond to a cancer diagnosis. You cannot judge people on it either. We all need to get through it in our own way.

I am just grateful that the people around me seemed to understand this better than I did at the time. They let me be. They gave me space. At work, at home, among my friends.

I was lucky.


Monday, 20 April 2015

119. Of beds and dreams


20 April 2014, Easter Sunday

I get very tired.

I don't know whether that is my body's reaction to several weeks of emotional upheaval, or a small dose of cancer-related fatigue.

I know about cancer-related fatigue. It is often described as one of the most debilitating symptoms of cancer, more debilitating than pain because it is so much harder to control. Fatigue can only really be managed by learning how to live with it. It is the kind of tiredness that doesn't improve with rest.

In any case, I found myself in bed by 10pm the other night and falling asleep straight away. I haven't done that for a long time. Ever since that bout of crippling insomnia last year, and the sleep training programme I forced myself through, I have been evangelical about not going to bed before 11.30pm and never lying down during the day, because it upsets my hard-won internal sleeping rhythm.*

Yesterday, I swam 40 lengths and suddenly couldn't do the 41st. My limbs simply wouldn't support me. I had to drift back to the start of the pool and heave myself out.

[If I'd known then that a year later I still can't swim 41 lengths, I would have laughed in disbelief.]

And this afternoon, having managed to lead the church music [huh? on a Monday morning? oh no, of course, it was Easter Sunday], cook the lunch and enjoy Easter egg time with the family, I simply had to go to bed.

I have decided just to give in.

Sometimes I ignore it and keep going, and that's fine as long as I really do keep going rather than sit down for a breather (because then I can't get up again). 

But I think it's OK, and hopefully won't upset my sleeping, if I take refuge in my bedroom sometimes.

At least people are understanding. As I have noted before: cancer is a pretty good excuse.

*The year before, I had somehow got myself into a horrible three-hours-a-night-if-I'm-lucky thing, with occasional nights of zero hours sleep. It went on for months. I was a zombie and I was desperate. I can highly recommend the online sleep training programme; you can find details here. It worked wonders and got me back to refreshing seven-hour-nights - but boy, it was hard work - certainly not for the fainthearted.

I was really worried about the effect of my cancer-induced lie-downs. The sleep programme was very stern about only using bed for sleeping: even just reading in bed was forbidden. It was all to do with associating bed with sleep again, so that you go out like a light as soon as you hit the pillow. Which did indeed work, eventually.

But now, I had to give in and give up. I spent a lot of the past year in bed. It has included books, music, iPads and BBC iPlayer. Miraculously, it doesn't seem to have upset my ability to sleep. Perhaps the sleep training has really given me back my internal sleeping switch. As soon as I switch off the lights, I switch off my day and I'm gone. If I do find myself lying awake, I revert back to the harsh instructions of the sleep training programme: however tired I am, I get up and sit or lie somewhere else. This prevents me associating my bed with pointless lying-awake. The key thing is not to worry about being awake - and usually, I'm soon snoozing on the sofa.

Let's hope it lasts.

Now, back to a year ago...


I don't remember my dreams very often, but this morning's dream was vivid. It hardly takes a psychologist to interpret what it means...

I'm on my bike, uphill, at a decent pace. It's quite hard work but it is very clear that I'm going in the right direction. One of my daughters is cycling ahead of me. I think we are going home.

Then, suddenly, I come to a stop, almost falling off my bike. It takes a moment to register that my front wheel is missing. it must have come off suddenly, and I am stranded, my bike resting on its front fork.

I realise that this is a catastrophic breakdown and I won't be able to make it home, or wherever we are going.

I am gutted. I should after my daughter, alerting her, but she doesn't hear me and cycles on without me.

I look back and see my wheel rolling down the hill, away from me. There is no way I can go on, no way I can catch up with her.

But just as reality sinks in and sickens my stomach, someone catches my wheel and indicate that it can be fixed back onto my bike.

That's when I wake up.

Saturday, 18 April 2015

118. A week off from everything

It was most welcome, this week in Majorca with my husband and one of our daughters.

Not as sunny and warm as we'd hoped, perhaps, but certainly as restful as I could have wished for.

Nothing to do, nothing to worry about except which book to read next, which food to choose from the sumptuous buffets, whether to swim in the pool or walk to the beach.

We've never done this before. It's not my kind of holiday, being catered for in a place with pools and beaches and sunshine. OK for a couple of days perhaps, but then I'd start twitching and wondering where the action is. Walks! Bike rides!

But now, it was just what I needed. Tiredness still overwhelms me. Yes, we did the walk and the bike ride (leaving daughter behind, mind: this kind of holiday was her choice and walks/bikes didn't feature on her wish list) but only for a few hours at a stretch, and that was me done for. Back to the book, the glass of wine, the food all nicely cooked with someone else doing the washing up.

I am intrigued by the person emerging from this illness.

I'm not the woman I was before. Not physically, not emotionally. One day I may be able to reflect on that properly, but for now, let's just reflect on the hair. After all, that is what most people comment on when they see me.

New look...
It's growing back very thick, very grey and rather curly, although it is a bit early to tell whether the waves are here to stay.

It is now at a stage where I can pretend that it's meant to be like this, and the image-conscious daughter no longer needs to worry whether I'll whip off my hat.

I can't stop running my hands through it, because it feels so unusual and luscious after all that baldness. Small milestones: first shampoo, first drip-drip after a shower. First time I had to do something to it because it was sticking up the wrong way.

Some friends urge me to keep it like this. Trendy! Sassy! Glamorous! and words to that effect.

Perhaps. I'm not sure. It's not bad - and it's a whole lot better than no hair at all - but I'm not sure it is me.

Problem is, I don't know what me is anymore. As I said, I'm not the woman I was, but neither am I sure who I have become... which is both exciting and alarming, depending on the mood.

Relaxing in Majorca

Friday, 17 April 2015

117. The test results

If all goes according to plan, we are travelling back to London from Majorca today. Ah, the spring of 2015 is so much better than the spring of 2014. But just in case you don't want to miss out on last year's colourful events, this blog post was prepared well over a week ago and put into the system to appear on your screens today...


17 April 2014

My perspective has shifted. Now, I perceive this as Good News:

I have cancer. It is confined to a small lump in my breast. It hasn't affected any cells in the rest of my breast, or in the other breast.

I will need a lumpectomy. My operation is planned for the 1st of May, in exactly two weeks' time, one month after my diagnosis.

Six to eight weeks later, I will start a three-week course of radiotherapy.

And that, we hope, will be that.

The only remaining unknown is whether the cancer has spread to the lymph nodes. This will be tested during the operation.

These are the facts.

We met with the surgeon today. I think she was rather taken aback by all the questions I asked (What is the hormone receptor status? Is it HER2 positive?) even though I'd been given a rather smart folder with information for the breast cancer patient, directing her to ask exactly those kind of questions. In the end, she offered to show me my MRI scan pictures. Even I could see how  clearly defined and confined the cancer is.

Of course I am relieved, although there is also a strange sense of anti-climax. All that worry and upset, all those utterly fundamental thoughts about living and dying. All that frightening loss of control.

I feel as if I have some, if not most, of my control back again, now that I am armed with the full facts and a certainty that this will turn out to be a mere blip on my path, rather than a deviation from it.

[Ah, little did I know that there was more to come...]

Now, there is a danger that I slip back into my old familiar self, the one who is in control, the one who can cope.

The charmed one.

Perhaps the biggest shock in all of this has been my shock itself. I keep thinking: if I'm so utterly thrown by this, so tearful, so shaken, then how on earth will it be if something really difficult happens? If, like so many people I know and love, I have to cope with a life-changing, life-long condition? (Diabetes, arthritis, depression.)

If, worst of all, I lose a child or husband?

Cancer carries a certain gravitas, I have discovered. I have told almost everyone I come into contact with, including people I don't know, who need an explanation for my inability to give a talk or attend a conference. There is universal, instant sympathy and understanding.

Now that it turns out to be relatively minor, I feel a bit of a fraud. Of course it is nice to get all this sympathy, but shouldn't others get an equal share of it? There are so many misunderstood and debilitating physical health conditions (quite apart from equally debilitating mental health conditions) that need as much sympathy, as many allowances.

In a way, I feel lucky that I have cancer because people understand my distress and my need for time off. As I have been saying, only half-joking: As far as excuses go, cancer is quite a good one.

But perhaps I ought to listen to those wiser than me. Like one of my good friends, who said: "It is like you to be positively reframing this as an educational experience but you are allowed to feel less positive emotions from time to time."

Owl has helped enormously in making the children part of this, making them understand.

I almost forgot to take him to the appointment with the surgeon, but my younger daughter reminded me.

"He's a bit worried about what the doctor is going to say," I said, making him tremble.

"Oooh, don't worry Owl," my younger daughter said, rushing over and kissing him. "You are not alone, because your mummy is worried too."

Sunday, 12 April 2015

116. With friends and family in Holland

ONE YEAR AGO... spending a couple of days in Holland

12th April 2014

I meet my Good Old Friend for tea and cake.

She is a cancer nurse and has seen hundreds, if not thousands, of cancer patients go through their treatment. She is also one of my nearest and dearest friends.

I am discovering once more how completely wonderful it is to have friends who have known me for so many years. Good Old Friend and I met as teenagers, starting our nursing training together, and we have walked alongside each other ever since. I love my friend and would trust her with my life.

Good Old Friend thinks this definitely sounds like an early cancer, a treatable cancer, a cancer I will survive.

"I think," she says, "that this will be a part of your journey and it will turn out to be something really important and significant."

She talks me through the questions I need to ask the surgeon. Reassuringly, she explains that even metastasised breast cancer [cancer that has spread] can be cured with chemotherapy these days.

And yet for all that reassurance, she also tells me of her utter shock when hearing my news.

To find that she, too, was shaken: that has validated my own shock.

Her son [aged 15] had asked, also in shock: "Gaat Irene nou dood?" ["Is Irene going to die?"]

It's not all bad news...
Good times that week included time with extended family:
with my sister at my aunt's 91st birthday party

I am staying with my sister and my older daughter.

Whose Dutch, by the way, has improved enormously.

[That was one reason for sending my daughter across the Channel by herself: she took a self-taught Dutch GSCE that summer and needed practice. Thank you sisters and friends who took her under their wing - she passed the exams with flying colours!]

My daughter loves Knee Owl.

"Why don't you make me one?" she asks.

I will! What kind would she like?

"I don't know. Maybe I can invent something wrong with me?"

Ah. I see. Owls are there for the sick and the infirm. But because her knees are fine she won't need my friend's, and because she doesn't have cancer she won't need mine.

I tell her that she won't ever need an owl as an alter ago and a companion in illness, because she's got Pig. He is the best.

Saturday, 11 April 2015

115. Of Owls, emotions and a teenage son


11 April 2014

This is rapidly turning into Owl's story rather than mine.

Although of course it is mine, my deeper, truer story perhaps. I am flabbergasted by its power, the way it instantly reaches the part of me that dares not show itself.

"I am frightened" doesn't ring true, because I don't recognise myself when I am frightened.

"I don't want to be a cancer patient" may be true, but it sounds petulant, complaining, angry perhaps.

But when I say "Owl is frightened", I am filled with compassion for him, for myself. Choked with compassion. Poor, poor Owl. Of course he is frightened.

Of course I am.

And I know that no amount of reassurance or shows of strength can take his fear away. No use saying that thousands of Owls before him have had cancer and got through it and are fine. He knows that.

But he is frightened, and all I can do is sit with him, sit with himself, and allow him his fear.

Owl doesn't want to be a cancer patient. That is not a statement borne of petulance or rebellion against life: it is a frightened whisper.

I don't want to be a cancer patient, not because it clashes with my role as competent and in-control woman, but because it clashes with my sense of self. It turns my world inside out.

Isn't that the hardest thing?

So many people have credited Owl with wisdom, yet here he is, toppled over (literally) by the slightest breeze.

Here I am, with my life so full of blessings, aged 50 and never suffered any significant loss or life challenge. Early stage breast cancer hardly ranks highly on the list of possible challenges, but like Owl, I am blown over.


I am feeling much less nervous, physically, than earlier in the week. I no longer have that constant weight in my stomach, the lurching, the butterflies. Perhaps I am getting used to being classed as a cancer patient? To the uncertainty it brings?

But I am living on such an emotionally charged level.

The slightest thing turns on the tears, and that is something I am no longer used to. Weeks, months, even a few years can go by without any need to cry about my life (crying at films or beautiful music doesn't count).

But now, I cry when I think about myself.

I cry when I write about Owl and his feelings.

I cry when people are nice to me (and so many people are nice).

I cry when I suddenly have more to do than I thought I had: tears of not coping.

The sound of the cello, the feeling of hot water on my skin, a loving embrace: everything moves me to tears. It is as if I am connected to the raw essence of life and love, all the time, and it is exhausting.

A few days ago, I wrote about the unhelpful things people do or say.

How a focus on themselves, rather than on me, turns their words from supportive into an ordeal.

I feel a bit mean now, having said that. There have been several such people in recent days, and I am so conscious of how hard it is for them to be confronted with illness or death. Most people are simply not experienced with communicating about such things, or too fearful of being confronted with the emotions of the suffering, the ill and the bereaved, and so they can't really listen.

I am feeling much warmer towards everyone now and try to encourage as much openness as possible by talking openly myself.

And I am learning to ignore the comments or suggestions that aren't helping.


My son returned from his school trip last night. It was late and he was tired, but my husband and I both agreed that this couldn't wait.

So we sat him down at the kitchen table and told him that I have cancer and will need treatment.

"Oh, OK," he said in typical teenage-boy fashion, matter-of-fact and devoid of emotion or the betrayal of any concerns.

This evening, he and I have spent a long drive together. We are on our way to Holland, where he has a rowing camp (he missed the outward journey on the school coach as he was too busy returning from the other school trip, so I'm dropping him off in Amsterdam; I will then join my older daughter who is staying with my sister). I am writing this in the cabin of the overnight Harwich-Hook of Holland ferry.

[Are you keeping up? Blimey, such complex arrangements. I do remember how worried I was about this trip. Would I be in a fit state to drive all the way to Holland? Would I crash the car? But all went well. In fact it turned out to be a blessing in disguise, because car journeys are excellent for talking to teenagers.]

So, without being asked, I talked and talked about everything.

I talked about the MRI scan, the difference between radiotherapy and chemotherapy, why we need to wait for the results and what we are waiting for. I gave him all the technical knowledge I could think of.

He listened; he asked the occasional question.

"Is chemotherapy where your hair falls out?"

It can be. I explain why: how chemo kills fast-growing cells, and therefore kills cancer, but also affects healthy cells and in particular the ones that grow fast: hair; the lining of your stomach and gut. Hence the side effects: hair loss, diarrhoea, vomiting.

"Doesn't radiotherapy kill all the cells, even the healthy ones?"

It does. That's why the machine turns round, concentrating on the spot in the middle which will get blasted most. And that's why you have to keep coming back: you simply cannot have it all in one go.

I tell him how lucky I am, getting this now and not 20 or 30 years ago when treatment was far less sophisticated or successful; and getting it in my breast, where it can be found early enough.

"How did you find it? Did you just feel it?"

Yes, I did.

I told him everything, the whole story, from first feeling the lump and being so sure it was harmless, to waiting to hear how much of my breast has cancer.

My son won't ask questions, so I will just keep telling him what's happening, without being asked.

[Which is exactly what I've done, always. With all three of them. Test results, trips to the hospital, meetings with the consultant: I've reported everything as part of "this is what happened today". I have never sat them down again for a semi-formal conversation (too nerve racking for all of us!), but told them any news immediately, individually. Each child has needed a different approach, a different language. With my son, the approach has often been: talk to his back whilst he's sitting at the computer. Worked a treat, and he clearly thought so too... see my blog post on talking to teenagers about cancer]

To be continued...

Friday, 10 April 2015

114. A powerless Owl

At six o'clock this morning, I set off to Majorca with my husband and younger daughter. I have tried and failed to remember the last time we had a proper holiday. It must have been somewhere back in 2013.

Now, the last thing I want to do whilst splashing about in the Mediterranean is post blogs about One Year Ago, so yesterday I lined up four contributions for the week ahead (including this one) and pressed the "publish" button with a range of dates attached. I've only just discovered that such a feature exists on Blogger. If all goes well, they should arrive on your doorstep at the right time. If not, we'll have a bit of catching up to do when I get back.

My friends, I hope you enjoy last year's misery. If it all gets too much, just think of me lying on that beach with my newly sprouting hair. See you when we get back.


10th April 2014

I've emailed Owl's picture in the scanning room to a couple of friends who know Owl's story. One of them responds:

"Having a surrogate to be the patient sounds fascinating. Will you let him feel and say things that you usually wouldn't?"

I think about this, and the words that I tap into my iPhone are new to me, bringing fresh tears to my eyes. They flow easily these days.

"Owl wouldn't say boo to a goose and would never ask questions of the doctors and nurses. He lets everything happen to him and is completely powerless.

(Which doesn't upset him the way it would upset me, because he doesn't know any different.)

He is very frightened but accepting. He knows that he is loved unconditionally by my older daughter's Pig and my younger daughter's Bear, and that they love him not despite but because of his vulnerability.

And he knows that because of this love, it doesn't matter whether he lives of dies."

[That evening, I sat up until midnight to sew this friend an owl of her own. You can read about that here.]

To be continued...

Thursday, 9 April 2015

113. Owl makes an entry

ONE YEAR AGO... following my diary entry a couple of days ago, when I started dreaming up titles of my-cancer-story-turned-book.

9 April 2014

No, not How To Be A Cancer Patient after all, but When Owl Had Cancer

Here's why. Time to tell the story of Owl...

[Which I've already done, so I won't repeat it again. If you want to follow the story properly, you could read this blog post - it's an almost verbatim transcription of that diary entry. It describes how Owl came about, as well as the MRI scan I had on that day. The diary entry ends thus...]

One day, who knows, I may tell Owl's story publicly. At least I've got his photograph and his MRI scan certificate to show for it.

Well, now we know. His story has indeed been told. Publicly.

MRI scan with Owl, 9th April 2014.
What strikes me now about this photograph is how you really cannot tell that I've had a rather turbulent week...
Which makes me wonder about all those people we meet in hospitals, on the tube, in the shops.
What do we ever really know about someone else's life??

Monday, 6 April 2015

112. People's reaction to my cancer news


I used some of this diary entry in later blog posts, but let's have the whole lot here again anyway, because it shows just how quickly a brand new cancer patient deciphers other people's reactions... this was only four days post-diagnosis, after all.

6 April 2014

There are things about becoming a patient with a potentially life-threatening illness that I knew, but they still take me completely by surprise now that it's happening to me.

The ridiculously difficult transition from healthcare professional to patient, from successful multi-tasking-woman/mother/internationally-renowned-speaker-and-author to someone who is not in control.

There are things about other people's reactions, and how I feel about them, that are not surprising; things I knew - but now they shine with great clarity.

How wonderful it is that people do, indeed, react. How generous people are, and how much love and care they have.

How the one truly unhelpful thing is people giving advice, about how I could or should cope, what I should or shouldn't do. There is hardly any advice anyone can give that I haven't already thought of myself.

And then there is this one luminous insight into people's responses and reactions, something I've never heard about but which now seems so glaringly obvious.

So often, we hear that people worry about saying or doing the wrong thing. They worry about intruding.

My new insight is this...

It doesn't matter in the slightest what people say or do.
The only thing that separates the supportive from the unhelpful is their focus.

Is their focus on me, or is it on themselves? If the focus is on themselves, I will have to spend unwelcome energy on them.

This is where the unhelpful advisors sit. Either they are trying desperately to find something helpful to say, although there is really nothing that can help ("you mustn't think of it," "stay positive," "my mother had cancer 30 years ago and she's fine") or they can only think of what might possibly help THEM if they were in my situation, and believe that it should therefore help me ("I've got this really good counsellor, you should go...").

I don't mind this in itself, as long as they don't go on about it.

People with a focus on themselves are worrying about how they come across. I can sense how they are thinking about the effect my news has on them. Or perhaps there is something too self-conscious and insincere about their words. They might as well say: Look At Me, I Am Saying A Helpful Thing.

My luminous insight includes the realisation that patients (and I suspect it's the same for the bereaved) have a highly sensitive radar for insincerity. I can tell when people would actually rather not be talking to me. This has included, to my huge surprise and disappointment, the breastcare nurse.

[We've been there already. Let's cut that bit out and move swiftly along.]

One of the most helpful things someone has said to me (emailed, actually) was a colleague I barely know and rarely meet. He wrote that two of his friends had breast cancer ("both are now fine, by the way"): one worked all the way through her treatments; the other took all those treatment months off work entirely. The point of this story came with his final remark: "And they were both right."

Well, reading that email at my desk at work, the day after my diagnosis, brought on one of the many tearful moments of that day. What a wonderful way of saying that I need to find my own way of coping and listen to it, and whatever it is, it's OK.

The vast majority of people are helpful.

They may say exactly the same things as the unhelpful people, but they say it with their hearts open to me. When they say My mum/friend/colleague had breast cancer two/ten/thirty years ago and she is fine" they can then listen to my response. Which is this: my feeling so shaken is not because I worry that I won't live until I'm 80, but because my life and my perspective on my life has changed so completely.

When all they say is I'm shocked, and nothing else that could be construed as helpful, I feel better because I feel validated in my own shock, and because I am touched that they were open enough to contact me and tell me.

I can't help but feel excited about these new insights, and grateful despite the unwelcome circumstances. As I have already said to some of my friends, only half joking: Ha! There's an article in this somewhere...


Or a book!

I have caught myself dreaming up titles. Not How To Break Bad News this time, but How To Be A Cancer Patient...

Sunday, 5 April 2015

111. Shaken

Happy Easter everyone.

Let's start with that, because it's a year later and I'm fine. Today I'll be singing hallelujahs into the church microphone and hide Easter eggs in the grass. 

But I'll push on with the serialisation. It seems that sticking with the time frame is the best way of giving you an idea of what it was like (even though I didn't know then, but we all know now, about the happy ending, what with Easter eggs in the grass and everything).

Easter fell later last year. The 5th of April was just an ordinary Saturday made extraordinary by the turn of events.


5 April 2014

I wake up in the morning and all is well, I feel rested, I feel fit and healthy - and isn't it quite nice to have an excuse to take things a bit easier in the weeks and months ahead? As far as excuses go, this one is pretty good.

But within an hour the weight in my stomach is back and I need to focus very hard in order to ignore the butterflies, the outbreaks of sweat, the over-conscious breathing that's just a bit too shallow, the loose stools.

I feel utterly, utterly shaken and I'm taken aback by the extent of it.

Perhaps my symptoms of nervousness (because it really does feel as if I'm about to step forward for a scary exam) is an expression of the ongoing uncertainty about the extent of my cancer.

But more than that, I think it's my body and mind protesting about this sudden change of perspective, the way my always-healthy body has deceived me (and if it can silently grow a cancer in my breast, what else could it grow, what else might not be what it seems?), the way I have suddenly and totally unexpectedly turned into a cancer patient.

My mind goes back to that night when I first felt the lump, only just a month ago. Possibilities flashed through my mind, but I never really believe that this could be anything but false alarm.

I am telling everyone.

I don't want this cancer diagnosis to be something to whisper about. I find that I want people to talk to me, ask me about it, not shy away. To make that happen, I need to help them by opening the door and being open myself. For a day or so I had thought that perhaps I would keep this quiet (the way I had kept all my initial investigations quiet) but I realised that, in any case, people will hear about it. It's better to tell them myself straight away.

I have come to the Buddhist temple in Milton Keynes for the afternoon.

I'm here to celebrate the Flower Festival, the birth of Buddha - but really, to sit and breathe in the profound spirituality of the temple, and to see my best friend and the resident nun.

The temple is buzzing with preparations when I arrive; I find the nun in the temple room itself. I have known her since I was 19 and she in her early 30s, quiet but with a very strong core, working with the other monks and nuns who had arrived in England from Japan to build the Peace Pagoda. Now, she runs the temple on her own, with many volunteers helping her.

We hugged, sat down, bowed to the Buddha and to each other, smiling broadly. Then her face turned compassionate. (My best friend must have told her.)

"I've written your name," she says, gesturing to the ancient Japanese writing on the shrine, surrounded by flowers and incense. "I've been making offerings every day."

It brings sudden tears to my eyes.

The nun has grown radiant in her older years. The monks and nuns live by example; they rarely preach or counsel, so when they do, it feels like a precious gift.

"This is what happens to human beings," she says. "Suffering. This is the path we must follow. You must be strong. It is also beautiful."

I know this, but it helps me so much, hearing it from her. Because I know that when she speaks of being strong, she doesn't mean it in the way many people do. She doesn't mean putting a brave face on it, keeping the show on the road.

When she speaks of our inevitable suffering, she isn't being a pessimist, but a realist. My task is to find a positive way of living with this reality.

She is talking of a profound acceptance that whatever happens to our bodies, our lives, our loves, doesn't change our core, our spirit.

An acceptance that life's changes and trials are part of life's journey, and our acceptance of this, living it without anger, but connecting with all other beings, is life's beauty and my strength.

To be continued...

The lovely nun (centre, holding my baby son in 1998; my best friend on the right)