Friday, 27 March 2015

107. The breast clinic - again

The consultant looked at my fat stack of hospital notes, then she looked at me.

"It's exactly a year ago," she said.

I know. My blog post was ready and waiting to be released to coincide with that date, last year, when I found myself in this breast clinic trying to pretend that I was not a patient.

"Go and see the surgeon," my chemotherapy consultant had said at my final appointment two months ago. "She will decide on the best follow-up programme for you."

(I had questioned the standard procedure of giving women annual mammograms. What's the point of a mammogram when my cancer was of the occult, mysterious and invisible type?)

I have finally figured out how it all works. You start downstairs in the breast clinic, with all the mammography and ultrasounds and surgeons; then you get sent upstairs for the chemotherapy clinics - and/or to a different hospital altogether for radiotherapy; and then you get handed back to the downstairs crew for follow-up, with the handy mammography etc.

I hadn't quite registered the significance of being given a follow-up appointment for the 26th of March.

So, exactly a year later, I found myself sitting in that same waiting room. This time, I had brought the accessories of a proper patient: a raincoat, a husband, that sort of thing. But I also had some work papers hidden in my bag, because I expected we'd be out of there in half an hour and then I could go into the office, so I might as well make a start doing some reading in the waiting room.

"Are you sure you want to come into work?" my manager had asked the day before. "I think you should just go home after your appointment."

Oh, it's frightening how quickly we forget the lessons learnt. Surely, I just needed to breeze in and out of that consultant's room, and then I'd continue on my forward path, not looking back? I thought that this appointment was just to discuss the pros and cons of having annual scans rather than annual mammograms. My husband came along because we've got into the habit of going together whenever there are choices to be made or results to be discussed. But it was nothing to get concerned or distracted about.

I realised my mistake as soon as I turned right into the breast clinic instead of left into work. Should have brought a book or a mindless magazine. I gazed at my work paper and couldn't understand a word of it.

Because in this place I am, of course, a cancer patient, and it's not something to fit in on the side. How could I think otherwise?

Worlds apart... Look to the right: the breast clinic. Look to the left: work.

The consultant was not the same as my own surgeon, who has since left, but she was equally wonderful - without exception, the doctors I've met during this past year have been fantastic.

I had clearly misunderstood the nature of this appointment. It wasn't just to discuss the best way to do my follow-up checks. It was to actually do the follow-up checks there and then.

The morning went thus: wait, consultant, wait, mammogram, wait, ultrasound, wait, consultant again. Sound familiar?

They agreed to do the ultrasound as an added-in extra, because of the occult nature of my cancer last year.

The ultrasound room had the same young healthcare assistant as last year, still smiling, still happy with her job, still hoping to become a nurse ("It's so difficult to get into the training, you have to do lots of tests"). I hope she does get in. She clearly remembered me from last year ("Your hair! So different!"), including our conversations. I was impressed; she will be a good nurse.

The radiographer was the same too. Same words: "I saw your mammogram and it looked fine, it doesn't show anything." Well, I didn't expect it to show anything, given last year's experience. That wasn't especially reassuring.

It was much more difficult this time not to look at the screen with a certain amount of worry. I noted every slight hovering of the probe, every bit of darkness on the screen.

But hallelujah, the ultrasound didn't show anything sinister either. Back to the consultant. All clear. Come back next year.

My next appointment is in April 2016.

It shook me up, this morning of tests.

The unexpected realisation that if there was further bad news, this would be the day I'd find out. Talk about déjà vu. I hadn't even brought Owl; it hadn't occurred to me that he might be needed for scans and such like.

I had told colleagues I'd be available after 10am, but by now it was well past 1pm. My husband had to give up long ago (we hadn't anticipated being here this long and he had a work meeting), and I was exhausted. But to make the repeat performance complete, there was just one more thing I felt I needed to do.

I went across the road to the main building, up the stairs to the office floor, knock knock on my manager's door. She didn't seem sure whether or not to be alarmed at the sight of me.

"Don't worry," I said. "I'm fine. Everything is fine. But you know what? You were right. I can't do any work today. I'm going to get some lunch in the canteen and then I'm going home."

I did go to the canteen, but I couldn't shake off the awful feeling of being a patient rather than an ordinary customer or a member of staff. So I turned round and fled, out of the corridor, out of the hospital building, into the street.

Next year, I won't even think about going to work on appointment day. Doctors, mammograms, ultrasounds: that shall be my cue for cappucino, cake and retail therapy.

Will you remind me?

Thursday, 26 March 2015

106. The breast clinic


My work diary for 26th March 2014: 
10.30 am Meeting with Help The Hospices
2.30 pm Breast clinic

"Ah, you are in today!" my manager smiled, bumping into me at lunchtime. I'd been out all morning at that meeting in Central London.

"Yes, but I'll be out and about this afternoon," I said vaguely. "I've got a few things to do in the hospital."

She didn't ask further and I didn't expand. I had briefly mentioned my lump to my sister, and we had assured ourselves that this was going to be a cyst-busting exercise. I hadn't told anyone else. What's the point of worrying people needlessly? So I let my manager think that I'd be off doing research-type things around the hospital. I'd make up the lost work time some other day.

I wasn't quite ready at 2.30 pm. I was working on a research proposal and had hit upon a brilliant article that made me re-think my methodology. No matter: there was bound to be plenty of waiting involved. I went downstairs and across the road to the breast clinic, housed in its own separate building, with the brilliant article and a notepad in my bag.

The breast clinic waiting room: plenty of waiting indeed.

A busy place with its own little coffee shop. All sorts of people coming and going (mostly, but not exclusively, women of course), people's name being called, people's name being announced bright and clear on an electronic name-calling board. I sat there hoping that my name wouldn't be flashed up like that, to be seen and studied by all and sundry - what else can you do in a waiting room - but most of the time, I cocooned myself in the world of research methodology, getting rather excited about my new ideas.

I was sitting there as a professional, part of the hospital system. That waiting room was simply an extension of my office. I'm not like the others in the waiting room, surely. I'm not clutching an outdoor coat or a How to get here leaflet.

I certainly wasn't worried. Illness only happens to patients, not to staff. The work badge in my handbag, surely, would protect me from all that.

First of all, the consultant. [This was going to be my surgeon, but I didn't know that then.]

She prodded for a split second and announced, "Ah yes, there it is. Small. Clearly defined. Mobile."

(Exactly like my GP had said, and in the same reassuring tone of voice. Small and clearly defined and mobile is promising, apparently.)

"Go and have a mammogram first, then an ultrasound, then come and see me again."

Second, the mammogram.

Never a pleasant affair, but I've had one before so I knew what to expect.

[Chaps: thank your lucky stars that your private parts don't have to be squeezed and squashed between two plates, flattening them like a pancake.]

Third, the ultrasound.

The radiographer was very jolly, waving me in.

"Your mammogram looked fine," she beamed at me.

The ultrasound (similar to what you get in pregnancy) started in an equally jolly mood. I craned my neck and she explained what I was looking at on the screen, presumably just in case I would mistake my ribs for a massive tumour.

And then there it was, a clear darkening. She looked, readjusted her jelly-covered probe, looked some more.

"Does it not look like a cyst?" I asked, but I knew the answer already, because a cyst is a clear and distinct closed sac, and this looked neither clear nor distinct. 

"No, it's not a cyst," she said. "It is quite a small mass, but dense, with rough edges."

She went to get the consultant from next door. They both looked at the screen. Hm. Not sure. Better take a biopsy, send it to the lab.

[Looking back, this is when I knew it was cancer. Really. Dense mass? Rough edges? Needs a biopsy? Clue, clue, clue. But I didn't spell out this strong strong suspicion of my diagnosis. My diary continues thus...]

Still, I couldn't see myself as a patient and I couldn't help being the professional, chatting away about my work. It's always an interesting conversation with doctors and nurses treating me or my relatives: What do you do? I'm a nurse, I do research, I write, I wrote a book on how to break bad news.

(I keep thinking that next time, I won't tell the staff that I'm a healthcare professional, but when it comes to it, I always do, because otherwise I'm turned into an ordinary patient, and that won't do.)

The healthcare assistant, new to the job, got all excited about my explanations that we had produced a picture book about breast screening and cancer treatments for people with learning disabilities. We had someone in last week, it was really difficult, she had autism, she couldn't cope with the mammogram. How come my very own hospital doesn't use this book in its breast screening department? We chatted cheerfully whilst I tried to ignore the small matter of the biopsy, the cells being taken out of my lump.

(For the record: a biopsy under ultrasound involves more poking around than I anticipated, and the grabbing of breast tissue makes such an alarmingly loud noise that being shot at springs to mind.)

I asked the radiographer about the mammogram. How come there's such an obvious mass but the mammogram looks fine? It's to do with the density of your breast  tissue, apparently. Because the mammogram is a picture of the whole breast, not just a slice of it, it's difficult to see any thickly clustered cancer cells if the normal cells around them are also fairly thickly spread. Especially if, as may be the case, the normal cells look very similar to the cancer cells.

[I'd never heard of this before, a very obvious lump that is invisible on the mammogram. It didn't reassure, but I discussed this with the radiographer as a matter of interest, nothing to do with me, really, just something to store away and bring up in conversation: Did you know that...]

The consultant again.

"Come back next week, 11.30am, we'll have discussed your results in the team meeting beforehand."

I am completely with it. I have understood the implications of this not being a cyst. I know it could still be a benign lump, it could, it could easily be. But I also know that it might not be.

It might be cancer.

I ask her: "If it is cancer, what will happen next?"

I have to go to Holland, see my mother, take my son to a rowing camp in Amsterdam, collect my older daughter who is staying with my sister, perhaps give a lecture on how to break bad news (although I don't alarm her with the topic of my lecture). I get my diary out, put it on her desk, show her how busy I am.

She says: "Whatever it is, we will sort it out. It is very small, only 1.2 cm."

[I can still hear her say that. Whatever it is, we will sort it out. A very clear indication that the consultant herself thought it was cancer, without saying so. Oh, I knew, really, but the knowledge couldn't breach the barrier in my brain.]

I nod. I leave. Thank you very much, see you next week. All this has taken several hours. It is now past 5 pm.

And then, on my way back to my office, I can suddenly feel my skin prickle with tears trying to push their way out.

That bizarre feeling that everything around me is so very clearly outlined and I am not part of it. Here I am, walking past our reception desk as I have done so often before, but it is a different reception desk and the receptionist is a different person. The world contracts and expands around me.  I feel as if I am falling off the edge of it. I am beginning to shake uncontrollably.

What I need, I realise in my state of sudden distress, is someone to tell.

So I knock on my manager's door. She rushes towards me, away from her computer, when she sees my face, Oh no, what's up? Thank goodness for this wonderful person who is lovely and supportive and a nurse to boot, so I don't have to worry about protecting her.

I sink into a chair and cry all over her office.

To be continued...

Monday, 23 March 2015

105. Is it a lump? That kind of lump?

ONE YEAR AGO, from my diary.

That evening when I felt a lump... It was 8th March 2014. I was lying in bed and my husband was away for the night.

Is it a lump? That kind of lump? Breasts do get lumpy, don't they? Lumps wax and wane with the moon. Just ordinary thickening. It will pass.

Will it?

But the moon exerts little power over me these days. What about the other breast? Soft and fine. What about this one? I think it's a lump.

The following evening, to my husband: "I think I found a lump."

He, in a tone of voice I am unaccustomed to, taken aback and immediately concerned: "Oh dear."

Me: "I'm sure it's nothing, most lumps are nothing, but I suppose I'd better get it checked out."

It took four days before I ended up in my GP's consulting room (I didn't want any old GP. I wanted my own. That was her first available slot.) Each of those four days, my husband urged me to go.

I hadn't seen my GP since she came to my 50th birthday fundraising event. I never meet her outside the doctor's office (although we keep saying we must) and I go there so rarely, a couple of times a year at most. So we spent most of the time chatting, until we remembered I must be there for a reason, ah yes, a breast lump, let's have a look.

That's how unconcerned I was. I had even caught myself thinking beforehand: I hope this IS a lump, I don't want to be one of those people who bother their GP for nothing.

[Excuse me a minute, but let me just say, looking back through the dark tunnel of last year: HOW RIDICULOUS IS THAT?!]

My GP seemed unconcerned too. Yes, definitely there, I can feel it, but it's very clearly defined and movable, and that reassures me. Still, I'll send you to the one-stop-breast-clinic, all lumps must be checked within two weeks, national guidelines.

Have I ever had a mammogram? Yes, in fact I have, three years ago. I was part of a trial to see if it's worth to start the three-yearly mammogram screening at the age of 47 instead of the current starting age of 50. So I went along and it was fine. I'm probably due another one soon.

[I did indeed get called for another mammogram, halfway through my chemotherapy treatment. The leaflet explained that it was worth checking if I had breast cancer. It might save my life. That made me laugh. I was looking forward to explaining why I was cancelling the test (only one breast left to check! and that other one has been through various scanners already in recent months!) - but to my disappointment, the woman on the phone didn't ask why I was pulling out of the programme.]

I asked my GP to send me to St George's Hospital, thinking how handy it would be, I could just pop over to the clinic from my office. (And yes, that did turn out to be handy.)

My GP thought it was a cyst and so did I.

My appointment with the breast clinic was booked for 20th March. I postponed it because I didn't want to miss the conference I was going to attend that day. It didn't matter, did it? The next available appointment was a week later. I vaguely regretted this afterwards. What if...?

But by then I had made several phone calls to get the date changed and I didn't want to cause any more problems. I'd be the difficult patient before I had even turned up.

There were niggles, though. What if. What if. 

Don't be ridiculous, of course it's fine. Our family doesn't do breast cancer. I don't know of any female relatives with that diagnosis. I have none of the risk factors and all of the protective ones. I eat well, I am fit and healthy, I breastfed my three babies for at least a year each. It will be fine.

But still: it's such a common illness, why shouldn't I get it?

I think about some people I know, who were given a cancer diagnosis at the age of 80 and raged against it: Why me? And I've always thought: Well, you are 80, why not? But perhaps I'd feel like that too, if it was me.

But I don't feel like that at all, even now. I am sitting here thinking: I am 50, women get cancer. They do.

Why not me?

To be continued...

Sunday, 22 March 2015

104. The breast lump: a year on

When people ask me how I am (and they do ask, all the time, which is very kind of them), I can genuinely say: I'm fine. I am still waiting to see whether the booklets and cancer information websites are right when they assert that the months following the end of cancer treatment can be the hardest of all.

So far, I'm glad to say, there's no sign of this predicted hardship.

I am genuinely happy, every day, most of the day, that the ordeal is more or less behind me. My annus horribilis is set to turn into an annus mirabilis. I have counted my blessings and here they all are, spread before me, ready to be enjoyed to the full. It is not hard. It is wonderful.

I've heard people say that one of the upsides of having cancer is that you become aware how much you are loved, and this is true. I wouldn't go as far as saying that it counteracts the downsides of cancer (fear, exhaustion, misery, pain and nausea and breathlessness, sudden collapses, losing your grip on life, missing body parts, that kind of thing - see blog). But now that the fear, misery, pain/nausea/breathlessness etc have passed, and the missing body parts have become like a fondly but no longer longingly remembered deceased friend, the feeling that remains is of being loved and blessed.

Plus, enough energy again to actually enjoy that feeling. Plus, enough energy again to enjoy forgotten pursuits: going for walks, playing my cello, doing my job. Plus, gazing at my lovely husband and children in pure awe. Look at them, look how they've coped with having an ill wife and mother. The children have done so much growing and learning and maturing in a year; I wasn't always looking, but I'm looking now, and I'm proud of them.

I don't know how soon I will start taking these things for granted, but for now, I'm deeply aware of how lucky I am.

And yet, and yet.

It isn't all plain sailing, and this week has been a strange up-and-down one.

I suppose it's too much to expect life to go neatly upwards from henceforth. Energy levels fluctuate, which is remarkably easy to forget during the good times. I went for a tough, hilly coastal walk near Hastings, with a fellow Night Owl (training for the Moonwalk). Quite an achievement, we agreed. This was followed by a full day in the office working flat-out, using up all remaining brain power. Submitting a paper to an academic journal. Two steps forward.

Two Night Owls on a coastal training walk
After that, I had to spend two consecutive afternoons in bed. One step back. Cue frustration and that familiar feeling of uselessness.

I'm still not quite as bushy-tailed as I think I ought to be. Moments of happiness are quickly followed by sudden brief snatches of plaintiveness. In fact, I have been feeling rather melancholy recently.


Well, I wonder whether it's the anniversary effect.

It's March, winter turning into spring, exactly a year after finding the breast lump that changed the course of my year and my life.

That paper I submitted earlier this week? I was meant to sent it off last spring, but there was the small matter of a breast lump throwing a spanner in the works.

It's funny how the turn of the weather, the date in the diary creeping towards diagnosis day, brings it all back. It's not so much the memories of events that engulf me, but the feelings and emotions that accompanied those events.

I went back to the diary I started writing the day before I was given my cancer diagnosis. I'd found the lump, gone to my GP, visited the hospital breast clinic. I had not been sent home with the all-clear I had expected: rather, I'd been given an appointment to come back for the results. Oh dear.

I started writing that diary on the 1st April 2014 (pointing a little arrow to that date with the words: "If only this notebook was a joke...").

"Well, go on then," it starts. "Let's open the pages of this virgin book and start writing: that tried and tested way of making sense of life when life seems overwhelming or unnamed feelings vibrate below the surface. Using words to dig them up, look at them, expose them to the light of day. Keeping track, so that I can go back and have another look, ah yes, that's how it was, that's how it is, that's how it is no more."

The same sentiment can be heard in this:

"One day, we will look back, Owl and I, and marvel at the road we travelled."

You may have read these words before. I wrote them on my About Owl page.

The day for looking back has come. Thank goodness for that notebook, because remarkably, you do forget the details. Not just the details of exactly what happened, but also the details of how you felt. The sands of life have shifted; I am looking at a new landscape.

But the echoes of those feelings still sound a year later. Reading my year-old diary helps me understand why I am feeling strangely vulnerable and somewhat shaken right now. What shocked me most, reading it, was how utterly shaken I was by my diagnosis. There was a month between the diagnosis and the first lot of surgery. Physically, nothing had changed in that month; yet I was utterly unable to function.

Because everything had changed.

I was, quite literally, floored. This is what I marvel at: the extent to which I am now happily recovering, physically floored but no longer emotionally devastated. If you'd told me then that I would still be struggling with the effects of cancer treatments a year later, I would probably have locked myself in a darkened and soundproofed room for some proper wailing. Or, more likely, I would have laughed. Ill for an entire year? Don't be ridiculous.

"This could be the eve of becoming a cancer patient," I wrote on that April Fools Day. "I was going to wait until tomorrow before starting this journal. Why waste a perfectly lovely notebook on a benign breast lump that warrants few words beyond the minor surgery that will sort it out?"

But I couldn't wait, because these events are big. I'd forgotten how big.

Perhaps it is time to share the beginning of my cancer story.

I started this blog three months after finding the lump, summarising those earlier months in a few succinct paragraphs. I could not have shared my real emotions with you then, because they were too raw and I felt too vulnerable. In addition, I had no idea what blogging might be like. Would I mind it being public?

As it turned out, my public writing about deeply personal stuff has been well received - to the extent that it has given some sort of meaning to the past year. I couldn't do proper mothering, I couldn't do my job, I couldn't do anything - but at least I could write about it all, and that seemed to help not only myself but also a few other people. Marvellous. "I cried all over your blog today" would be the best news of the day. I moved people! I made them think and laugh and cry! Who knows, perhaps I could save the world from the comfort of my bed? Turn being a cancer patient into a new career?

Now that I'm back to mothering and doing my job and generally doing everything again, I don't feel quite such a strong need to keep blogging. But reading that diary, I realised that this blog is incomplete without the start of the story.

So, over the coming weeks, I will take you back in time and tell you what happened. What it was like.

Those were not the easiest of times, so it will not be a particularly jolly read, but somehow I feel it is important to share it with you, who have stuck with me this far. Feel free to skip or save till later if you'd rather enjoy your Easter egg hunt without my tales of woe. The advantage of the extra year is that you don't have to worry about me anymore.

As I said: I,m fine. Truly.

I'll see you tomorrow with the first instalment.

Friday, 6 March 2015

103. The fledgling Night Owls

I told my son I was going for a long walk. Training for the marathon.

"You're going to run the marathon?" he asked, incredulous.

No, not running, walking a marathon. Remember? I rashly signed up to do the Moonwalk in a few months' time. Twenty-six miles (or thirteen, if you'd rather do a half-marathon) throughout the night, wearing a fancy bra.

What's so difficult about walking a marathon, my son wanted to know. Why bother training? People go for long walks all the time. Off they set, hiking all day, mile after mile without so much as a warm-up stretch. 

"All you have to do is start, and then you just keep going," he said.

Put like that, it seemed a doddle. I felt a flicker of confidence. Of course! Just start and keep going! 

I could do with a bit of confidence, because although I have walked the occasional six or seven miles recently, there have also been days when I more or less collapsed after an hour. My confidence was not helped when a fat envelope landed on the mat which contained highly alarming instructions from the Moonwalk organisers. What shoes to buy. How often to stretch. (Every day, or better still, several times a day.) How often to train, and how long. (Often, and long.) How to do Power Walking. (Use your arms! Aim for a speed of four miles per hour!)


What am I letting myself in for? And why?

Well, why does anyone ever take on a fundraising challenge? It's not just to raise money for breast cancer charities, is it.

I signed up because walking a marathon seemed like the highest possible mountain to climb - and if you can do that, you can do anything. Right?

If I can walk a marathon, I am BETTER. I will have proved myself, to myself, to the world.

I listened to a radio interview with Danish actress Sophie Grabol (from "The Killing") recently. It used to puzzle her why people always wanted to climb mountains and run marathons after having cancer. Then she realised that the year following her own breast cancer treatments, she threw herself into work. That was her marathon.

"I had a year when I felt I didn't know whether I was dead or alive," she said. "It's a way of grabbing life, to test what you are actually capable of doing. But also I think there's this element of proving to other people, to the world, that I am allowed to be here. You see, I climbed this mountain, don't shut me out. Which is ridiculous and not rational, because I also discovered that people are very kind when you need help. To me, the big challenge was actually to receive it."

Oh, I can relate to that. It's not just the way I have picked up work again, churning out research papers and flying off to Switzerland as if I have to make up for that lost year and then some more - just to prove that I am entitled to be here, still, despite that long absence.

Don't write me off. Stop treating me like an invalid.

That marathon, less than four months after the end of those horrible cancer treatments, may be as mad as going back to work the day after my last dose of radiotherapy, booking flights to Switzerland and Holland (I'm in Holland now, my first time back since my mother's funeral) - it may be as mad, but it is also as necessary.

It is now clear that by May, I will definitely be able to walk 13 miles. So that's not good enough. Only when I can manage what many healthy people would find challenging - only then will I feel that my Cancer Year is behind me.

CANCER was not over at the final dose of radiotherapy. In my mind it will be over four months later, when I cross the finishing line of that Moonwalk.

About a dozen Night Owls have now joined the team of Moonwalkers.

A veritable Parliament of Owls, made up of family and friends, some with a daughter or a husband. They signed up as rashly as I did: Oh, go on then, why not! Perhaps they felt that finally, here was something they could do to support me? (Although a cheer from the roadside, or across cyberspace, or just a bit of sponsorship money, would have done just as nicely.)

It probably seemed a good idea at the time, but now several Night Owls are getting cold wings. They, too, have found that fat envelope on their doormats.

"I notice that neither of us are talking about the half marathon now," said one Night Owl who signed up despite being utterly unsure that she could manage a half marathon, let alone a full one.

Quietly, some of the Night Owls tried to tiptoe away. This isn't just my challenge: it has rapidly become their challenge, too.

"I'm too old!" one of them said. "And actually, I can't see myself wearing a fancy bra in public." 

"I hadn't quite realised how time consuming all this training would be," said another. "Oh, and perhaps I am too fat."

"I'm not even sure I can walk at all," said a third, who had just been to see her doctor about the pain in her feet.

But you know what? I love the team all the better for being made up of wobbly and self-doubting fledgling owls. 

It makes me realise yet again that having cancer is just one of life's many challenges. It makes me feel grateful, even, that I have an excellent prospect of putting the whole sorry saga behind me. I get all the sympathy (and I probably collect most of the sponsorship money) but the others have their own mountain to climb - and they don't get quite such a clear view from the top. They may well be climbing for the rest of their lives.

They need as much encouragement as I do.

My team of Night Owls includes people facing years and years of living with rheumatoid arthritis, insulin-dependent diabetes, fracture-inducing osteoporosis. Someone recovering from a hernia. Friends getting their heads around ageing, loss, expanding body shapes. Perhaps most difficult of all: people living with episodes of crippling depression.

And that's just the stuff I know about. Let's be honest, don't we all have our own hills and mountains to climb, often quietly and unknown to others?

So I've called them back and cheered them on, my Night Owls who wanted to slip away in the night. We all understand that for some of us, just making it to the start line is an achievement. It doesn't matter if some of us can only make it halfway down the road or halfway through the marathon: as far as I am concerned, that is enough.

As in real life, we have our eyes on our own personal ever-shifting finishing line, wherever that may be.

(I've lined up a friend with a car who is willing to pick the bodies of collapsed Night Owls off the nighttime pavements. I hope I can say this out loud without getting a red card from the organisers... I know they read this blog. Their press office seems rather interested in my story and has already telephoned me twice about it.)

Feel free to sponsor us. You can click on this link to our fundraising page.

We are raising funds as a team, so it doesn't matter which person you support. You will spur us all on. You can also choose to sponsor the team as a whole. Not all of us are able to raise as much money individually. Some Night Owls were reluctant to join, as they weren't sure they could raise the required £100 per walker: their friends are on very low incomes, or on benefits, or (by virtue of being monks) have no money at all. In my view, it doesn't matter.

Support comes in many forms and sponsorship money is only one of them. But for those of you who feel able to give in that way, let me tell you: I have felt surprisingly supported every time an email landed in my inbox telling me that we've got another sponsor. It's like an act of faith in me and it encourages me to keep up the walking. Thank you, thank you.

Now, back to the training plan.

I am happy to report that my son's advice worked better than the training advice in the Moonwalk booklet.

Whenever I found myself flagging that afternoon, it was best to stop thinking about the number of miles. Empty your mind of goals. Instead, I heard his voice in my head.

Mum, you just keep walking.

It was as easy as that. When  I finally got home and checked my step counter, it said 20 kilometres: 12 miles. Just about half a marathon. It's a week ago, and I have just about recovered from it.

I am spending a few days with my sisters in Holland right now. This afternoon, we went for a short but lovely walk in the woods.

But the best bit came this evening. My sisters had found the perfect bottle of wine to give courage to a fledgling Night Owl.


Sunday, 1 March 2015

102. Lying down in public places

I can do everything again.

I can walk longish distances, I can work, I can sing, I can cook meals whilst hanging out the washing, I can sit in airports.

I just have to remind myself that I cannot walk and work and cook and wash and sit in airports, oh, and sing, all on the same day. I've tried, and guess what? I get tired.

Now there's a surprise.

The trouble is, how do I know at what point my determination to do at least some of these things in one day turns from a laudable attempt to put last year behind me and build up new strength to pure madness?

I look back at my repeated attempts to go back to work (even for just a few days) during all those gruelling treatments last year. That, I now see, was pure madness. Only now do I understand that friends' and colleagues' repeated exhortations to "concentrate on getting well again" meant exactly what it sounded like: stop trying to be superwoman, there is absolutely no shame in taking all these months off work.

I delight in the ability to walk longish distances, work, sing, etc; but I regularly find myself coming up short.

Usually on a Friday. Each morning, I look at the day ahead in delight. A whole new day! The possibilities! Hurray! Let's start that walk/work/washing/etc in the happy knowledge that I can do this again.

I try to keep Fridays free of obligations (including self-imposed obligations) so I can do all those extra things you never manage to fit into your life. (I usually end up doing just a little bit more work, but hey, let's call that a free choice).

So I anticipate those sort-of-empty days with pleasure... only to find, several weeks in a row now, that I am simply too tired to move or think, and end up lying motionless on the sofa whilst watching mindless stuff on iPlayer.

The "extra things to do on a Friday", clearly, should include "Do Nothing".

My body has not yet recovered. It takes time.

It's three months since the final dose of chemo; a month since the last shot of radiotherapy. My head may be covered with a grey helmet of hair, the skin around my scar may be healing (it's gone from angry red to bizarre mottled grey to just-a-bit-sunburnt), but after half a busy day, I'm like a deflated balloon.

One expert-by-experience told me that she was surprised how long it took to feel truly well again after her cancer treatments. You think you are better, and of course you are much better than you were, but still, it was six months before she suddenly thought: Aha! Now I remember! THIS is what it was like to have energy!

Will I look back at these first post-treatment months and wonder why on earth I tried to do so much all at once?

The trick, I now know, is to build in short periods of physical rest - and not to get frustrated by the need to stop. I went to Switzerland this week for two solid days of work meetings, and the only way to manage eight hours of sitting around tables was to spend some of it not sitting around tables. By 2pm, just after I'd given my half-hour presentation, I found myself in a dizzy cold sweat.

"Are you OK?" said the colleague next to me when I returned to my seat.

"No," I said. "I'm going to have to lie down."

He handed me his coat for a pillow. Just as well these meetings involved friendly colleagues who didn't mind me lying down at the back of the room. It seemed they were just pleased I had made it to Switzerland at all.

"Carry on!" I said from the distant corner. "I'm listening, I just can't hold myself upright for that long."

(Now I know why I am so much better off working from home. I hadn't realised quite what a difference it makes that I can do some of it in an unprofessional, horizontal position. A full day working in the office takes recovery time; a full day working at home is absolutely fine.)

Similarly, I found a lying-down spot during a day-long choral workshop yesterday. Plus, I ignored the conductor's frequent instructions to Stand Up. It's not that I can't stand: it's just that I need to preserve my physical energy if I want to last the day.

(But oh, how lovely to join my choir again. I haven't gone back to weekly rehearsals yet - evening things are still too exhausting - but joining this one-off workshop was wonderful.)

Cancer remains an excellent excuse.

"Of course!" people say, when I apologise for lying down. "Whatever!"

Perhaps we should all simply own up and zone out when things get too much.

I've noticed other people would also benefit from the occasional lie-down, for equally valid reasons, but they don't have my ready-made and easily understood explanation.

"We should all lie down!" one colleague said wistfully, weary after all these hours of meetings in Switzerland with several more hours to go.

So here is my resolution: I shall not only keep lying down (in public places if needs be), but I shall positively enjoy it.

Who knows? It might even set a trend.

I'm in there somewhere, singing again... but let me just sit down and lie down occasionally