Saturday, 31 January 2015

97. My chances of survival

I have a 90% chance of being alive in ten years' time.

Is that good? I think it's excellent. But statistics are funny things, aren't they. As my wonderful GP agreed when we had another good long chat this week, you tell one patient that his chances are 70% and they go Oh how fantastic. You tell another patient with the same diagnosis exactly the same, and they break down in distress, Oh how terrible.

So I wasn't surprised when my husband and I sat in the cancer consultant's office for the very last time this week, and she responded to my "What are my chances" question with a "Do you really want to know?"

But she wasn't surprised that this particular patient said Yes I do. She had already turned to her computer screen to show me the systems they use to work out the answer to this kind of question. Clearly, she had pigeonholed me (accurately, I feel) as an intelligent, articulate patient who is able to negotiate the healthcare system. She said so herself.

This was in response to another question, about follow-up appointments.

There aren't any.

There used to be. Breast cancer patients used to be invited to return to the doctor's office every six months to begin with, then once a year. But the cancer team found that this could lead to patients not reporting in with worrying symptoms (new bone pains, say), because they would think, Well, I've seen the doctor two months ago and she said everything is fine, so I'll wait until I see her again in four months' time. Plus, apparently most new problems are not picked up at the routine appointments, but discovered by the patients themselves in-between appointments. Oh, and another thing: patients tend to get rather anxious about the follow-up checks.

So now they've started a new system called Open Access Follow-Up, where they don't call you in, but you contact them with any worrying symptoms.

The problem with this, said the consultant, is that some patients are easily put off if they are not immediately successful in getting an appointment. Others who are perhaps less clued in than I am might simply not turn up with their new aches or pains.

Interestingly, she added that patients tend to use the OAFU (yes, honestly, they use that acronym) in the months following the end of treatment, and then tail off. Perhaps they simply need to get over the shock of not being a full-time patient anymore, or the insecurity that comes with not having doctors and nurses peering at your blood results and prodding your surviving breast on a regular basis.

According to the OAFU leaflet (see, we're all learning to speak the jargon here), the breast care nurse will teach me what kind of symptoms warrant an immediate return visit to the clinic. I haven't heard from her yet, so we'll wait and see... she's been off sick with stress from too much work, so perhaps it's just as well that I already know what to look out for.

New nodules in my scar or neck or other breast, of course. But also signs that the cancer might have spread (for me as a breast cancer patient, that is most likely to be my bones, lungs, liver or brain): any persistent bone pains, shortness of breath, tiredness, weight loss or headaches, and I'll be on that phone. And if they don't give me an immediate appointment, I'll just nip down to the clinic from my office, preferably wearing my Staff Badge, and make a fuss.

What they did offer me are annual mammograms, but I'm trying to argue my way out of that one.

No point, as far as I can see. My particular cancer was not visible on a mammogram, not even on that day when I went along to have my lump checked. The consultant touched my breast with one finger and went Oh yes, there it is, I can feel it and sent me along to the mammogram room followed by the ultrasound room.

"I've looked at your mammogram and it looks absolutely fine!" smiled the ultrasound woman. She soon stopped smiling, because within seconds, there it was on the screen, an unsightly ragged-edged mass that clearly wasn't the cyst we were all expecting.

I had never heard of breast cancers that are invisible on a mammogram, but now I know there's even a word for it. Mammographically occult.

Definition of "Occult": having mystical, supernatural or magical powers, which I prefer to the medical definition: not accompanied by readily discernible signs or symptoms.

That's my cancer: one with magical powers, in possession of an invisibility cloak.

I've added mammographically occult to my vocabulary, which always catches doctors by surprise. Keen as I am to understand everything, I made Ultrasound Woman explain to me how it is possible to have an Occult Breast Cancer, and I now see how it happens (bit too convoluted to explain here, but it's to do with having very dense breast tissue. Too much information, perhaps?)

Consultants have been mumbling promises of an annual MRI scan instead.

Ah, the MRI scan. I've seen the pictures taken shortly after my diagnosis, when they wanted to check whether the cancer was limited to the lump or whether it had gone all dotty in the rest of the breast. No hiding under a magic invisibility cloak here: my lump lit up on the screen like a beacon.

Alas, although my consultant was happy to endorse my argument, it wasn't up to her to decide whether I qualify for such five star follow-up: it's the surgeons and the radiographers, apparently, who discuss this in their team meetings, and they are not always keen on it. (Why not? Too expensive? Not enough evidence that it's necessary? I didn't ask.)

So I've fixed an appointment with the surgeon in two months' time. (Not my own lovely surgeon, unfortunately, who has now left.) If she says No, I definitely will ask why not, and I will only be satisfied with fully argued and convincing medical explanations.

Apart from the annual mammogram or MRI scan, I have started a 10 year course of hormone treatment.

My cancer was spurred into growth by oestrogen, so I'm taking pills to stop that happening. Five years' worth of a drug called Letrozole, probably followed by five years' worth of Tamoxifen (although the consultant pointed out that the treatment plan may well have changed by then, what with new research coming out all the time).

I also need to take a daily bone strengthening tablet, to combat Letrozole's side effects. Despite my gloriously young bones. Better safe than sorry, I suppose.

My GP wrote "until 2020" on my repeat prescription. Blimey.

So, back to the statistics. "What are my chances of the cancer coming back?" I wanted to know.

And yes, I did want to know. I stressed the point by saying that I understand about statistics and their limitations. So many ifs and buts. In the end, they are just numbers - and, as my surgeon once helpfully pointed out: "It could just be your number."

The consultant spent some time explaining how the online "what's her chances" system works, what research it's based on, what the caveats are. The doctors use it to work out, for example, whether a course of chemotherapy is worth the bother. I won't bore you with it all, but if you're interested, I'm happy to talk it through over coffee, as I do find it all utterly fascinating.

So, here are the numbers. These are percentages of women still alive 10 years after the diagnosis. They don't look at recurrence rates (in how many women does the cancer come back?) for reasons that I'll also explain to you, if you like, over that coffee.

Looking at a lot of studies combined, of all women with my type of cancer (sized just under 2cm, spread to three lymph nodes) who had been treated with surgery but nothing else, roughly 80% were still alive 10 years later. About 17% had died of cancer, and 2% had died of something else. (Leaving, it seems to me, a mysterious 1% who are not alive, but they haven't died either. Told you. Tricky things, statistics.)

But of the women who had been treated with surgery and chemotherapy, 90% were still alive after 10 years.

So that'll be me.

My husband was surprised that the chemotherapy had added so little.

"All that effort! You'd think that it would have doubled your chances, at least."

That's another bit of evidence that everyone interprets statistics differently. (Which is why some people keep buying lottery tickets, but I would never bother. Unless it's a school raffle, where I once won first prize, an iPad mini, with a 50p ticket. What are the chances of that? Much, much lower than my chances of getting another bout of cancer in the next few years.)

From where I am sitting, it seems that the chemotherapy has doubled my chances. Instead of on in five women succumbing, it's now one in ten.

Which is not much worse than your chances, I may add. Because one in every eight women will get breast cancer at some point. (Perhaps my chances are even better than yours, because of the Letrozole and the annual scans?).

One in three people will get cancer. One in four people will die of it.

I know these statistics. I reel them off, sometimes, when giving talks. Cancer affects all of us. So being told that I have a one in ten chance of dying in the next decade doesn't worry me too much. As far as I can see, I've always had a one in ten chance of dying. (And the chance goes up, I suppose, as we get older. What were the chances of my elderly mother surviving for another ten years? There, see what I mean? The statistics probably include women in their 80s, but I think my chances are better than theirs.)

So unlike Ms C, who had a similar cancer to mine but didn't want to go back to her normal life because she was so terrified that the cancer would be back, I don't feel terrified at all. Yes, I know that it can come back. But if it does, then it's just bad luck, isn't it. I've done everything I can to prevent it happening. The surgery, the chemotherapy, the radiotherapy, the hormones. Now it's just a case of living life again, knowing that things can, and do, go wrong sometimes.

I suppose the difference with my pre-cancer life is that now, I really know that things can go wrong.

I knew it before, but only in my head. Now, I know it in my body and in my soul.

It's a useful thing to know, of course, but you can't let it ruin your life. Life is, after all, a terminal condition for all of us - but none the less enjoyable for it.

Sunday, 25 January 2015

96. Wine on a Sunday afternoon

All the cancer leaflets tell me that after treatment, I am likely to remain tired for a long time (we're talking months and months); feel depressed; and generally not be able to pick up my life where I left off.

That may be so, but for the moment, I am feeling rather optimistic. Yes, I am still tired, but I hope that I can just accommodate that in my life, which I actually intend to pick up more or less exactly where I left off.

Not just that: I am also hoping to catch up with some things I have not been able to do in the past year. See friends and family, go on holiday, that kind of thing. It's rather wonderful to be able to book some time away without any caveats. None of that Well, just try, and if I can't do it, I'll cancel it.

No more need for the Cancer Card.

I don't expect to be done and dusted with the misery, but then who ever is? That's part of life, isn't it. That will just be an ordinary share of misery, rather than the one-thing-after-another misery of the past year.

To celebrate that, those of us who weren't too busy with homework (husband, younger daughter, myself) went out for a lovely lunch. And yes, we all agreed that it was worth celebrating.

Perhaps miserable wasn't the word everyone would choose, but the past year, younger daughter thought, had certainly been annoying.


"Because sometimes I wanted you to read a book to me, and you couldn't because you were too tired."

I couldn't agree more: 2014 was extremely annoying indeed. See: large font and everything. Bold. Italics.

Tonight, I have decided, is a good time to read Bear and daughter a bit of Winnie the Pooh. You're never too old for Winnie the Pooh. The very good news is that I can understand Winnie the Pooh again.

That, you have to agree, is progress.

Friday, 23 January 2015

95. Champagne on a Friday afternoon

Let us raise a glass, Owl and I. Cheers. That is the last radiotherapy session over and done with.

The final installment of nine months worth of cancer treatments, starting with a lumpectomy on the 1st of May last year, followed by a mastectomy, four months of chemotherapy and now these past weeks of radiotherapy. There are, of course, still many years of hormone treatment ahead of me. Years of follow-up appointments, scans and who-knows-what-else. (In fact my next hospital appointment, to take my blood and discuss all this with the doctor, is on Monday.)

But that doesn't really count, that is merely the New Normal, the Normal where I have become - and will forever remain - a cancer patient in the NHS.

I felt remarkably well last weekend.

Two weeks of treatment in the bag, and there I was in the swimming pool on a Saturday morning... ("They told me I'm not allowed to swim," said my Choir Friend who is also having radiotherapy at the moment. Yes, they told me that too. I've considered the advice and decided to ignore it on the basis that the I-feel-much-better effect of a swim outweighed the risk of chlorine-induced skin irritation. Anyway, I can't feel the skin around the radiotherapy site.) there I was, and before I knew it, it was half an hour and 50 lengths later. Only a week earlier, I had floated sedately along in an effort to keep my limbs vaguely flexible. Now, I was positively cleaving through the water. For the first time in living memory, I felt strong. (I'm not exaggerating. I had genuinely forgotten how that felt.)

The next day, I stood in front of the microphone in church and sang lustily without becoming dizzy or sweaty of even vaguely out of breath.

I came home on top of the world.

"I feel BETTER!" I beamed, several times, to make absolutely sure that my husband and children got the message. Because I did feel better. Properly better. All the more sweet for being so unexpected, because I was still in the middle of my radiotherapy treatment.

"What shall we do to celebrate the end of nine months of misery?" I asked them.

To which one of my children remarked, "Now mum, don't exaggerate. It wasn't really nine months of misery."

I suppose I should see this as good news. The fact that my children don't seem to be too traumatised by the whole affair. I suppose they haven't seen the tears on my pillow, and I'm glad they didn't.

It even made me stop and think. Am I exaggerating? Perhaps it hadn't been too  bad, after all? Because look at me, here I am, still smiling (no, beaming, as noted above), with not much to show for my efforts except a bald head. And even that won't last.

But still, I was entitled to a bit of a celebration, I thought. So I booked a very English afternoon tea (with champagne) at a posh hotel near the Royal Marsden Hospital, to be enjoyed immediately after my final zap. I found a good friend who could take time out of work to celebrate with me.

It's been a funny sort of week, an up-and-down one, but with the up and the down happening at the very same time. Two sides of the same coin.

On Monday, I marched cheerfully along to the hospital, chatted cheerfully to my fellow patients, cheerio'd the radiotherapists cheerfully, walked cheerfully back home, then fell into bed and cried and cried. Perhaps "wailed" is a better description.

My happiness, borne of that wonderful feeling of getting better, only exists because of all the misery. (Yes, misery. I'm going to insist on it. It was bloody miserable.) It means that I can't be this happy without acknowledging the misery at the same time. I can't smile without tears.

And it isn't all over. Having fancied myself fully recovered last weekend, I then had to acknowledge that actually, these daily round trips were getting a bit too exhausting, my daily recovery time a bit longer, so I had to give up on work. Trying hard not to feel too guilty about it, not too much of a wimp. I'm sleeping well beyond the morning alarm clock.

So, today's final zap then.

For some reason, it was a couple of hours later than the usual 11.30am slot, so Mr A and Mr B and Ms C and Ms D weren't there, but there were several other patients I vaguely recognised. I joined in cheerfully with the standard how-far-do-you-have-to-come and how-many-more talk.

"My last one today!" I said, cheerfully.

Cheerfulness all round. In the waiting room, in the zapping room, walking out of the waiting room: I couldn't stop smiling. Then I went to the toilet, and just like that, the coin was flipped and I cried.

Afternoon tea to celebrate the end of cancer treatment
I'm glad I booked that afternoon tea-and-champagne. It was wonderful to sit and talk with a friend who doesn't mind the odd bit of tearfulness, and can laugh heartily when needed.

A couple of hours later, I crossed Albert Bridge for the last time. Well, not the last time I'm sure, but next time I'll leave Owl at home. I'm quite done with it all.

Leaving the Royal Marsden behind for the last time
So, once again: let us raise our glass of champagne on a Friday afternoon. Cheers everyone!

Wednesday, 21 January 2015

94. More tales from the waiting room

You'd have thought that Mr A, who is staying with friends during his radiotherapy regime, is the winner when it comes to Long Journeys. Mrs A, who has come down to London to keep him company, tells me that they live in Scotland. There are no zapping facilities in the far north, and going to Glasgow would have been just as troublesome.

But now Mr A has been trumped by Ms C, who has come all the way from the Middle East.


She has been staying in a hotel since the summer, all through her chemotherapy regime and now through radiotherapy as well. They don't have the facilities where she lives either, so her government pays for people like her to have cancer treatment thousands of miles away, in America or Britain.

We end up chatting after our respective zaps. She invites me for a cup of carrot soup in the hospital cafe. This is because we have discovered that we are both researchers unable to produce the stream of academic papers that, on the face of it, we now have the time to write, what with all this sitting about.

It's a discussion I started in the radiotherapy waiting room with Ms D, who has just started her 3-week regime. She was dreading it, because when she had radiotherapy 20 years ago she got so tired, she almost had to crawl in every day.

How about work? I ask her.

Well, yes, that was a stupid thing to do, she now thinks. She worked all the way through that earlier treatment, and not just any old work, but teaching children. It's not as if you can let your head clonk onto a desk halfway through, as I have often done during my cancer-treatment-working-days. She used to go in and teach, then catch the train to the radiotherapy department, then go back to work and teach some more.

This time, she has wisened up. "How long do you need?" her GP asked her, back in September. Until January, she thought, but he'd have none of it. "He said to me, 'you won't be going back in January' and he wrote me off sick until March. So I can recover properly. I don't want to have to go back to work at the first sign of feeling better. I want to have a couple of weeks when I feel really well, before going back."

I nod approvingly, secretly thinking that I am absolutely determined to go back to work properly next week. But then I don't have a class of children to teach all day, and I only work part-time. Plus, I've had all that glorious time to do a bit of recovering during December. But who knows what's sensible? The pressure to work, we agree, comes mostly from ourselves.

I notice Ms C listen to this discussion. (That is how chats in the tiny waiting room go. You talk to the people who you have begun to recognise. The new faces (they might not be new to the waiting room, but they are new to you) pause their reading, and perhaps join in, or just nod and smile, and lo and behold, you've got another waiting room buddy.)

Does she work?

"Yes," says Ms C with feeling. "But I can't. I just can't do it. I'm a researcher, I have papers to write, but I can't concentrate. My mind goes this way and that way. There are all these appointments and all these things going on in your mind. I cannot do any work until all this is over."

They are brief, these discussions, because before you know it, one of you is called in for your zap. So when we both emerge more or less at the same time (there is more than one machine), she invites me to join her for the soup that is part of her daily routine.

We listen to each other's stories. Our diagnoses and treatments are more or less the same, but that is where the similarities end.

I marvel, once again, at how differently patients cope with what seems to be the same situation.

Ms C remains so deeply shaken by her cancer that she doesn't even want to go back home when the treatment ends in a few weeks' time. She is terrified that the cancer hasn't all gone. Shouldn't something else be done? Something more? Shouldn't there be answers, some certainty, more tests perhaps to show that she is cancer free?

It makes me wonder at the huge amount of worrying that goes on in this world-famous cancer hospital, the accumulated fear, the loss, the distress.

You can only guess at it, looking around the waiting rooms. You see patients and relatives, some looking weak, some looking stressed, but mostly, looking fine. The seasoned ones (that's me included) chat merrily over their hot chocolate.

One young woman, sporting cycling gear and some newly sprouted hair, shook her head when a fellow patient, clearly new, expressed distress and confusion at all this waiting in different rooms.

"I've become institutionalised," she said wrily. "I just do as I'm told and don't even notice it anymore."

It was Doctor's Clinic Day, when many patients, including myself, had to see the doctor in addition to having their zap. Confusion all round about having to go and get your notes from the radiotherapists, then wait in the main reception room (the one with the fish tank), or perhaps not, perhaps they want to do your treatment first, just ask them.

I probably still have a bit of professional confidence left, which comes with a feeling of entitlement, so I marched straight through the "Authorised Access Only" doors to the radiotherapists' command room and demanded my notes, which were duly found and given. But later I discovered other patients who had been waiting and waiting in our little waiting room outside those doors, wrongly assuming that someone would know they were waiting for their notes, and only discovering their mistake when a more assertive patient accosted a passing radiotherapist with a meek "my notes please".

Ah, I could write a book. All I'd have to do is spend a day or two observing proceedings at this hospital, then have a cup of tea with one fellow patient, hot chocolate with another, carrot soup with a third, and ask for their stories. No two stories are the same.

This evening, as I sat in our homely kitchen peeling potatoes and chopping carrots and cracking eggs for the family meal, I counted my blessings yet again. I don't even want to imagine what it must be like for Ms C, spending months and months going through chemotherapy and such like, thousands of miles from her home, and not even having a kitchen to crack an egg in.

Oh, and before you ask, yes, I'm still walking. But I've given up on work this last week of my treatment.

I do need a bit of a lie-down after I get home, and by the time I'm up again, there just isn't enough time and energy left to get my head round the academic paper I ought to be writing. Like Ms C, my mind still goes this way and that way.

Next week, I promise myself.

Friday, 16 January 2015

93. One breast and a couple of prostates (on bikes)

Yes, there is a certain amount of vulnerability and sadness in the radiotherapy waiting room, but since you are all thrown into this together, it can also be quite a jolly affair. You smile at each other as you enter and make light of your daily ordeal.

Most mornings I share the waiting room with Mr A and Mr B.

They chat about the difficulties of getting the daily post-chemotherapy immune-system-boosting injections when you are abroad. (Abroad? Post-chemotherapy? They’re not talking France. They are talking Far East.) Anyway, when abroad, Mr B couldn’t find a doctor or nurse willing to administer his injections, so he did it himself in the end. Not wanting to just chuck his spent syringe in the bin, he tried to smash it flat, but then found that it wasn’t made of plastic. It fragmented into a spray of glass.

We all laugh heartily. I advocate the merits of do-it-yourself, and so, having found out how easy it is, does Mr B. Mr A sticks with his trips to the health centre around the corner, looking away when the nurse gives his injections.

Ah, the things you talk about.

We exchange journeys (I’m let off lightly with my commute from Clapham) and length of treatment (I’m let off even more lightly with my three weeks. The chaps all seem to need 7½ weeks).

“I’m staying with friends,” one of them offers. He wins.

And you should see how freely we exchange intimate body parts with perfect strangers, as easy as sunshine or rain.

Like the other day when I felt too weary to walk (and anyway I’d overslept so needed to get there swiftly, which meant bike).

I breeze into the waiting room with my fluorescent cycling jacket and my paper cup of cappuccino from the machine. There are Mr A, Mr B, and a somewhat elderly Mr C whom I haven’t seen before.

Have I cycled? How splendid. Mr B tried cycling from Roehampton last week. He sailed along, arriving in a state of exultation. How easy it was! Until he tried to get home on that blustery day, and realised why it had been as easy as all that.

“I used to cycle lots,” says Mr C. “I’d like to do it again, but aren’t they saying you shouldn’t be cycling with prostate?” He looks at me for confirmation of this hypothesis.

“I wouldn’t know,” I say. “I haven’t got a prostrate. I’ve got a breast.”

We all hoot with laughter.

“Yes, you can definitely cycle with breasts,” agrees Mr C. He worries on, “I’ve even heard that cycling can cause prostate. Is that true?”

Mr A and Mr B look doubtful. Again, for some reason, they all look at me, clearly the bicycle expert with my fluorescent jacket.

“I have never ever heard that before,” I say, doubtfully. “I come from Holland, and if it is true, wouldn’t Holland be riddled with prostate?”

(Note how we don’t even mention the word cancer. No need for the seasoned patients in the radiotherapy waiting room. It's just breasts and prostates all over the place. Oh, and I think I've just spotted a throat.)

We haven’t quite finished laughing when I am called into the zapping room. I haven’t even started on my cappuccino when the three of them go, Hahaha, cheerio, see you tomorrow.

Thursday, 15 January 2015

92. Why Owl didn't meet Hugh Grant

As far as a first work engagement following a much-too-long period of sick leave goes, this one wasn't bad.

"We're celebrating 25 years of Books Beyond Words," my friend, colleague and mentor Sheila had said. "And we're launching a new book in the series, about becoming an actor. Hugh Grant co-authored it. Baked Bean are going to do a play. Can you come?"

It was bang in the middle of my radiotherapy regime, but I couldn't let that stop me. I have been involved with Books Beyond Words for a long time and have co-authored two of them. Plus, I have occasionally worked with the Baked Bean theatre company over the past 14 years. All the actors have learning disabilities. They have often helped with my research, and it's always be a joy.

How could I say no to the chance to watch yet another of their brilliant performances, this time with Hugh Grant as a guest actor?

(If you want to know more about that, you can watch this.)

The other thing I wasn't prepared to let go off was my fitness regime. The walking was going splendidly. If you can ignore the fact that I am sleeping several hours longer than is usual, I am feeling fine. How far would it be from the radiotherapy department to the theatre? (A good 4.5 miles.) Could I do it, given that I would already have walked to the hospital (3.2 miles) and would have to carry a pair of decent shoes? Can't very well go to a drinks reception and meet a Hollywood actor wearing sweaty trainers that don't match the lipstick.

But I did have a good three hours in-between my two rather diverse engagements. I also had a good deal of determination. I am soooo fed up with all this cancer business. Can't wait to go back to normal, back to being able to say yes to things again. Not having my days bisected by cancer treatments that threaten to knock me out of action.

"Doing anything in particular this afternoon?" asked the radiotherapist. Well, yes. I told her, but I'm not sure she believed me.

My friends, I made it. The walk took well over two hours. I slipped into the bathroom on arrival, swapping shoes and wiping my brow. Thankfully, the show came before the reception, which gave me a chance to sit down for a while.

The performance was marvellous. I clapped and cheered and leapt to my feet. I enjoyed every minute of this very ordinary yet extra-ordinary thing: going out. Properly. (And I could even call it work.)

The actors take a bow (photo copyright Peter Taylor, Beyond Words 2015)
The corresponding image from "The Drama Group"
(copyrighted image,

There was another first: going bare-headed in a crowd.

I have always worn a scarf in public, except in hospitals and waiting rooms. Without it, I thought, I would just look too naked. But now, I'm as fed up with the need to wear headscarves as I am with the cancer itself. Perhaps I've just got used to my bare looks to such an extent that it seems unnecessary to cover things up. 

Now that it's winter, I usually wear some sort of hat, because otherwise it's too cold. (In fact I'm wearing one now, sitting at my computer in the privacy of my own room. It is soft, warm and comforting.) Sometimes, I enjoy the chance to experiment with different looks. But I want that to be a choice, not a necessity.

And is there a better place to "come out" than here, in a setting where lots of people have unconventional looks, and where difference is celebrated rather than shied away from?

So there I was, just being myself, and it was wonderful.

Not just because I met so many old friends and colleagues, some of whom I hadn't seen for years, but also because there were no elephants in the room. There was no tiptoeing around my cancer, but there was no need to get stuck on it either. This time, the usual exclamations of You look so well! didn't bother me, because I felt rather well. I even managed to keep standing, despite the fact that I'd walked a total of about ten miles (19,000 steps! can't help boasting, sorry).

I discovered that a surprising number of people read this blog. It creates an interesting kind of bond. There we are, we've never met each other, but we're instantly on somewhat intimate terms, because they know so much about me.

I was too  busy talking to everyone to go and say hello to Hugh Grant. Oh well. Another time, perhaps. (And he probably doesn't read my blog, so what would the conversation starter with this particular stranger be?)

With old friends and colleagues at the reception (photos copyright Peter Taylor, Beyond Words 2015)

So why deprive Owl of the chance to see a play and meet Hugh Grant?

I did contemplate it. If I can thrust Owl into the hands of unsuspecting surgeons, radiographers and nurses for the sake of a photo opportunity, then surely I could have made him pose with a Hollywood actor.

But you know what? I want to keep him safely tucked away in the cancer world. This small triumph was glorious because it was not part of the cancer world; it was part of moving forward. I am impatient, champing at the bit to get going with my life.

I want to go back to work, back to life, back to normal, unburdened by cancer and yes, unburdened by owls.

Oh, and just in case you're wondering: I took the tube home. Collapsed into bed almost at once. Walked to hospital the following day. But the day after that (today) my bones protested too much, and anyway I overslept, so I took my bike instead.

Saturday, 10 January 2015

91. The Radiotherapy Fitness Regime

Having radiotherapy is really quite straightforward. It goes roughly like this.

1. Go to hospital (1 hour)
2. Announce your arrival and wait your turn (so far, anything between 5 minutes and 45 minutes)
3. Replace top half of clothing with unflattering hospital gown, which does a poor job of covering you up and in any case will have to come off again 15 seconds later (2 minutes)
4. Hop onto the machine and let today's Radiotherapy Duo line up your tattoos with the light beams (5 minutes)
5. Get zapped by radiation (2 minutes)
6. Clothing and hospital gown in reverse order (2 minutes)
7. Go home (1 hour)

Of these steps, numbers 1 and 7 are the most trying by far. I am looking at a daily round trip that takes three to four hours altogether, because the steps don't follow each other seamlessly. There is a certain amount of faffing in-between each one, filled with cups of hot chocolate from the machine or chats with the receptionist.

Sometimes, I just sit for an extra half hour before heading home, because both the wait beforehand and the welcome lie-down on the radiation machine were too short to be sufficiently rested.

BOASTING ALERT... I have managed to walk all the way there and all the way back again. Yesterday I even made a detour to visit a friend.

That was almost 15,000 steps, a good 7 miles (12 km). Yes, I'm tired, but it's the exercise, I tell myself. It's a different, more pleasant kind of tiredness. In fact I'm feeling quite invigorated by it all, walking a bit further every day and ending the week feeling stronger than I started. I only went by bicycle once, and that was because I left it too late to walk. Also, I had things to carry, including Owl (who needed his photo opportunity). Carrying stuff is much easier on a bike.

My favourite bit of the daily trek is Albert Bridge, with its quaint architecture, the view of Battersea Park Peace Pagoda and the sign warning that All troops must break step when marching over this bridge. (Blow up the picture and you can read it for yourself.) Also, it means I'm almost there.

Crossing Albert Bridge
My husband has been watching me, waiting for tiredness to strike.

"I'm feeling fine!" I tell him every day. It's beginning to feel like a disappointment.

"But they were quite clear about it," he says, confused. He is right. They were. We've been told repeatedly to expect two things: tiredness and sore skin, like sunburn.

So I google it. Why does radiotherapy cause fatigue?

Having waded through the vaguely patronising cancer-leaflet-speak, which mostly tells me that I will get tired and that I should try and take a short walk every day, or put chairs all over the house so I can sit and rest when needs be, or do easy things with the children, such as a board game (they clearly don't know about our household's potential for vigorously loud and very exhausting board games), I manage to find three reasons.

One: The daily trek to hospital.

Yes, I know. The thought of having to do it by bus or tube is enough to make me want to lie down.

I met a lovely man in the waiting room on Tuesday. Several decades older than me, twinkling eyes, infectious smile, clutching a box of chocolates for the nurses. The waiting room erupted in cheers as his name was called, "Your last one!" Fellow patients smiled at each other indulgently after he'd skipped into the zapping room, "Ahhh, such a nice man."

It turned out his course of radiotherapy lasted 7½ weeks. Seven and a half! It takes three buses and an hour and a half to get here, he told me when, fifteen minutes later, he emerged from his final zap.

No wonder it's the travelling that accounts for people's exhaustion. At least I live in London, not in the Outer Hebrides.

I am trying to turn the daily trek to my advantage with the walking plan. I hadn't expected to manage it for more than a few days, but so far so good. Although it's frustrating that my plan to go back to work is only half working, because so much of my day is taken up by the going-there-and-back. But I do credit the walking with my manageable fatigue levels. 

Two: The distress of having cancer.

It's very upsetting having cancer, I am told by the leaflets and the internet. It will make me feel tired and low in mood.

Let's cross that one off for now. I've left my upset and low-mood behind, safely shut away in 2014. New year, new start and all that. I am not fooling myself that I'm done with distress, but I am determined to keep it at bay until after these three weeks of treatment at least.

Three: The body needs to repair the cells damaged by radiation.

Aha, finally, here is a good physical reason, one that makes sense. Somewhere, it was likened to feeling tired after being utterly sun-burnt. My choir friend, who had a lumpectomy recently and is also undergoing three weeks of radiotherapy this month, was told by her doctor to imagine the kind of tiredness you feel when recovering from a bad cold.

Neither of these (sun burn, bad cold) sound half as bad as the exhausting effects of chemotherapy. A cold doesn't even register on the scale.

So I'm OK at the moment. Let's hope it lasts.

Radiotherapy itself is a bit of a non-event.

As you lie there, you are probably meant to look up at the sunshine through the palm trees, but I can't help keeping a beady eye on the large whirring disc. Sometimes it twists; sometimes it doesn't. Things inside it open and close, like a futuristic monster from Dr Who. The seemingly harmless ones are usually the most dangerous.

Sometimes the disc stays largely on my right hand side, and I'm waiting for it to start turning around me, but then half of the Duo comes back to inform me that I'm done.

The only thing I have noticed is a faint smell of burnt metal, which only happens when the Duo is out of the room, so I suspect it's the smell of radiation. Does the machine smell when it emits its dangerous beams? I like to think so, because I'd believe in the worthwhile nature of my treatment more if there was a bit of substance to it.

I was told about the non-event beforehand ("You won't feel anything, you won't see anything, it won't touch you"), in a way that was probably meant to be reassuring but I find somewhat disconcerting. At least with the chemo there was no mistaking the poisonous nature. The slow drip-drip-drip of vile-looking liquids into your vein.

The effects were clearer, too, and more immediate. One of my veins never recovered from the onslaught; I can still trace its path along my arm. A drug addict's vein, one friend observed, charmingly.

And the effects are on-going. My hair continues to fall out. My nails have gradually turned a dark yellow during the past month, with black splodges. My thumb nail is beginning to come off. I am clearly not yet purged of the poison.

In comparison, the vague pinkness of my chest skin is hardly worth reporting. Painful? I wouldn't know, because I've lost all feeling around my scar and under my arm. Permanently, it seems. They must have cut a couple of nerves during surgery. I'm sorry about that, but right now it has its advantages. (Also, I can pretend that I'm not at all ticklish, as long as I offer only my right armpit as evidence.)

I am not taking Owl with me anymore.

It's not just that I don't want to carry him. It's that he can't be bothered.

Spot the blatant projection. I am probably not engaging properly with this radiotherapy business, or with the whole cancer business for that matter. I'm too busy focusing on getting fit and healthy again.

Or perhaps it's my children who have moved on. They rarely ask after Owl these days. They simply ask after my cancer, or better still, they ignore the whole affair altogether.

That's fine by me.

That's where my head should be, with my arms raised onto the blue stirrups

Keeping a beady eye on the whirring radiotherapy disc

Tuesday, 6 January 2015

90. The radiotherapy waiting room

Here we are. A new year. I hope you had a good Christmas period, whatever "good" means for you. Personally, I am glad to see the back of 2014. There was too much in it. Roll on 2015.

A month off work, a month off treatment, and I feel restored.

Well, perhaps restored is a bit misleading, as it conjures up images of my old sprightly self. There is a New Normal that isn't quite the same as the Old Normal. I can't fit as much life into a day as I used to, and I still feel constantly tired. But it's not half as bad as the acute post-chemo tiredness.

It's a bit like being a new parent.There comes a point when you realise that tiredness is here to stay, and you might as well get used to it, rather than lament your lost bright eyes and bushy tail. So you stop saying "I'm tired" when people ask you how you are, as tiredness is a given, no longer worth reporting. You start adding things into your day, baby in tow, because if you wait for full energy levels you never get anywhere.

I have gradually added more things into my day, cancer in tow, and lo and behold, I've kept going. Christmas as usual (I even stretched the day to Midnight Mass). Longer walks. Visiting friends. Cooking meals. Sewing (with a nice new bag to show for it). I even picked up my cello again, after months and months of silence. (No easy feat. I only started learning the cello a couple of years ago, with proper lessons and everything. That's not enough to develop muscle memory or play in tune. I will simply have to start again from the very beginning.)

"I feel as if I can do life again," I said to my husband this weekend.

Perhaps not quite as much of it, but still. I am ready to go back to work. So I was back at my desk yesterday morning, making a dent in the inevitable email backlog. I know I've got three weeks of radiotherapy (starting yesterday afternoon), but hey, how hard can that be? Surely, surely it can't be anywhere near as bad as the chemotherapy. 

That's the thing about physical health, or lack thereof. When things are looking up, you can't quite imagine how bad life has been. I think I would genuinely have forgotten how rotten the whole chemotherapy saga was, if I hadn't written it down in this blog. When I read some of my earlier posts, I think, Blimey, that sounds awful. Poor woman.

Now that I'm emerging from months and months of misery, I feel rather buoyant. I'm not going to let a course of radiotherapy knock me down.

Famous last words perhaps? We'll see.

My husband thought he ought to come along to my first radiotherapy session ("I should at least see what you're going through") but he had a funeral to go to, and in any case, I didn't feel the need to be accompanied. I was pretty sure husbands aren't allowed into the radiotherapy room (once I got there, I saw patients going in whilst their other halves were left behind in the waiting room). I don't mind going alone.

I decided to walk to the Royal Marsden Hospital (even if I have to take the bus back). It takes a good hour, but that will be excellent training for my Moon Walk.

You see, my daily trips to the hospital will not be a treatment programme. It's a fitness regime.

You could call that Positive Re-Branding.

So off I set, with my newly stitched bag around my shoulder. I've thought it out carefully, the bag design. There's an iPod sized pouch on the shoulder strap so I'm crossing the Thames to the sound of Bach Favourite Cantatas.

I suddenly remember that I have left Owl behind.

Perhaps it's another sign that I am not really engaging with this whole radiotherapy business. Cancer is so 2014: I am done with it. Owl, too, belongs to a different era.

I arrive at the radiotherapy department with my bright eyes and bushy tail restored.

The staff are lovely. Including the receptionist.

Either that first day was just bad luck, or I am somehow a different patient (one that manages to hold onto her name), or the staff have read about it on my blog.

Or perhaps they've had communication training? There was a leaflet up on the wall about communication training for all staff, and could patients please let so-and-so know about their experiences, for learning purposes. I contemplated briefly whether to send so-and-so the link to blogpost 85, but dismissed it. Perhaps I'll send it at the end of my treatment here. As a patient, I have come to realise, you feel too vulnerable and dependent to speak the truth to just anyone. You never know: there may be consequences.

In any case, the receptionist tells me that her name is Sue*, and that I'll be seeing her every day, just come and report to her, and she'll tell me where to go, even though it will be the same place each time, and this is where it is, and there's the toilet, and over there is the free hot chocolate. Any questions, just ask.

Marvellous. Although after all those explanations, I am devoid of questions.

Waiting for my turn on the machine, a lovely radiotherapist takes me into a small room for the standard question-and-answer session.

Nowadays, at the slightest hint of Could you just... I reel it all off: Irene Tuffrey, First Line of Address, Sixteen-Nine-SixtyThree. It always makes them smile, and it speeds things up no end.

Her explanations are excellent and detailed. You go on the machine, we'll be putting you in exactly the same position as you were when you came in for your planning session, that may take some time, we'll be talking over your head, not being rude or anything, that's just what we do, then we'll go out and you'll hear a beeping noise, don't worry, it's just the noise it makes to show that we've left the room...

On it goes. There will be no surprises later on, except perhaps for the rather nice view of the sky through some huge palm trees, projected onto the ceiling above the radiotherapy machine. I've always wondered why hospital ceilings look so much more awful than the walls, when it's the ceiling you'll be looking at.

My reality check comes when I'm back in the small waiting area and a man in his sixties (broad guess) shuffles in with what must be his wife.

The lovely radiotherapist comes out to greet them. "How are you?" she asks him, and with that hazardous question she manages to convey not only that she knows him and genuinely wants to know his answer, but also that she can cope with the answer.

I know the possible effect of such a question when you're feeling vulnerable. Oh, I do. And yes, there he goes.

"I'm so weak," he says with an almost imperceptible shake of his head, and I can see his face crumpling. The women's arms form a quick barrier around him, "You've done so well, only a few more to go..." 

I know that won't be much reassurance to someone who feels they cannot cope with another day. I feel for all of them, because what can you say? How can you reassure? You can't, not really, because clearly, it's all bloody awful. You might as well say nothing at all. That might be better, in fact.

He shuffles into the toilet as quickly as he can.

"He is just so emotional," his wife says to the radiotherapist, her voice edged with worry. When he emerges, dabbing his eyes with a tissue, they sing his praises about how well he is coping.

"I just feel so weak," he cries.

The radiotherapist tries to reassure him, "You've had chemotherapy and that knocks you for six, and now you're having radiotherapy and that knocks you for six. Put them together and you're knocked for a hundred. It's to be expected."

He just stands there, looking broken. Looking like a shadow. A shadow of his former self, I imagine.

It's just me in the waiting room. When the radiotherapist leaves, I am tempted to go over to him and say "oohh..." and not much else. I would love to sit with them, talk to them, listen to their stories. Hers, as much as his. It can't be easy when someone you love and care for is so ill and miserable. 

But instead, I stare at Vogue (it was either that, or Hello) trying to swallow back my own tears. Gone are the bright eyes and the bushy tail. Because there is an easy crossing between my genuinely cheerful smile and this man's tears. I could be there in a jiffy. I suspect most cancer patients can. It's just quite rare to see it in public.

Perhaps it's easier for patients to hold it together in the chemotherapy lounge, where you only have to go once every couple of weeks, so you can gear yourself up for it. This radiotherapy business must be relentless, especially for those who have to attend for more sessions than me (six week courses are standard), or those who are much more ill than I am.

I remember now how, during my hospice days, we sometimes sent terminally ill patients for radiotherapy. Not because it might cure them, but because their tumour was growing so large that it was pressing on something inconvenient (a windpipe, say, or a bowel) and it caused them nasty symptoms. A few shots of radiotherapy could shrink it to manageable proportions. Those patients were often very ill indeed, and they must have come to this very same waiting room.

I will be looking at my fellow patients, and I'll be wondering about all their stories. But I will try not to ask them.

I'll try to be a patient, not a nurse.

*It wasn't really Sue, but let's just keep her anonymous