12. Scars in the swimming pool

Hurray! I’ve been swimming!

A mere 15 minutes and a gentle 20 lengths, but still, this is progress.

I am well aware that July is going to be my best month this side of 2015, physically. I have no idea how chemotherapy will affect me. It’s completely different for each person, apparently – hence my determination not to read any more grim first-person-accounts of fellow patients, lest my courage fails me.

But I cannot imagine it being a walk in the park. Or a swim in the pool, for that matter. So I’ll be trying to clock up as many walks and swims as possible before the avalanche of chemo side effects.

In an attempt to answer your How are you? question, here is the physical update.

I am still very tired, but I am also beginning to make an effort to rise from the sofa and do things. I plan them carefully, because I know I cannot do more than a few things each day. These things have recently included cooking evening meals, walking to the school gate and the supermarket, a 20 minute bike ride to the hospital (although cycling, I have always felt, doesn’t really count as exercise, because you can sit down whilst you’re doing it), playing the guitar and singing into the church microphone (I was rather pleased with that effort yesterday) and, having failed to attend any rehearsals, being an appreciative audience of my choir’s concert on Saturday night.

I can do these things again. I can pretend to be normal, at least for an hour or two. That’s a lovely feeling. It tires me out and I have to rest a lot before and after, but it is nice to feel that I am building up some slow strength.

Swimming was missing from this list. In recent years, I have established a habit of going to the pool several times a week (as well as starting Pilates classes) in order to cope with a sedentary job and a dodgy back.

I defied my breast care nurse’s advice following the lumpectomy (“Better not do swimming yet, that’s far too strenuous. Stick with walking”) and was back in the pool two weeks after the operation. My energy levels were boosted instantly.

So I was rather disappointed when I was visited by a hospital physiotherapist, the day after the mastectomy, who told me that my right arm should avoid any weight bearing exercise for at least six weeks. (“Oops”, I said, as I’d just pulled the heavy bedside table towards me. Well, what else could I do? It was on that side of the bed, it had my tea on it, and turning over to use my other arm was too painful.)

“Swimming?” I asked hopefully.

“No swimming,” she warned. “That puts far too much strain on the arm.”

The issue, apparently, is the avoidance of lymphoedema.

I have had many patients with lymphoedema during my hospice days, and it is not to be envied. This harmless but extremely uncomfortable arm swelling can happen to women who, like me, have had the lymph nodes under their arm removed. The lymphatic fluid in the arm can navigate its way around this problem, but if there is too much of it, the system becomes overloaded and the arm swells alarmingly. Once this starts, you’re scuppered for life.

It has been my biggest fear (well, apart from the minor matter of finding more cancer cells in my body, and dying as a result). I am worried about living a future with a swollen arm and hand, which would interfere with my ability to play the cello, sew more owls and wag a finger at my children.

So I’ve been very careful to exercise my right arm gently, encouraging the lymphatic fluid to be pumped back nicely. I have also been very careful not to overload the arm, not to get any cuts or grazes or insect stings or sunburn (which would send extra quantities of lymphatic fluid rushing to the scene, with its infection-busting properties). I hadn’t realised that strenuous exercise also increases the load of lymphatic fluid.

Thankfully, I have friends and colleagues who are either experts in cancer, or who can beat a quick path to such experts. One of my work contacts asked a nurse consultant in the lymphoedema clinic of a major cancer centre, who sent a reassuring email:

"It is absolutely fine for Irene to go for a gentle swim as long as the wound has fully healed. [It has.] Swimming and any movement in the water is not weight bearing and will encourage lymph drainage, but I would advise against anything too exertive and to 'listen' to her body."

I am not looking for a third opinion. I tend to stop looking once I've found the advice that suits me. A gently swim will suit me nicely.

So here is the next question: What to wear in the swimming pool?

I had pondered this before. Apparently there is a whole world out there, titled “mastectomy swimwear”, but I had already decided that I wouldn't bother with it.

This dismissal is possible because I am not blessed (or burdened, as the case may be) with anything more than an A-cup, so I won’t have vast quantities of redundant fabric flapping around my chest. Furthermore, my swimming costume is made for swimming, not for sauntering along the sea shore. It tends to streamline any A-cup into oblivion, so my thinking was that the difference between left and right would be a mere blip on the surface.

Still, I hadn’t tested this theory, so I put on the swimming costume last night and went in search of an opinion. I found my husband and my older daughter hanging out the washing and groped my way through the wet sheets, emerging on the other side: “What do you think?”

My older daughter was puzzled. “What do you mean?” she asked, in a way that said “What’s so new about that costume? You’ve had it for years.” Which was promising. I think we are all getting used to my new shape, and are already beginning to be blind to it. Or perhaps it was due to the disguising properties of swirly patterns?

Once the issue was explained (“Well, look, it’s flat here”) they both thought that it was definitely noticeable but people were unlikely to stop and stare.

“Except children,” my older daughter thought. “They will notice.”

I thought about this, and asked: “Well, so what?”

My older daughter shrugged her shoulders. “They’ll just look at it, that’s all.”

For completeness, I checked with my younger daughter before setting off to the pool this morning. She clearly belongs to the above-mentioned “children” category, because she did indeed notice.

“Mum, you can see the scars,” she said disapprovingly.

(You can. I'm sure you've spotted them too. There are two: a long one from the mastectomy-and-lymph-node-clearance-surgery, and a short one above it, courtesy of the initial lymph node testing.)

“Yes, well, never mind about those. What if I didn’t have any scars?”

“It looks flat,” she pronounced.

“Does it matter?”

“Yes! It looks weird.”

For all of three seconds, I considered bringing my Softie along. Then I remembered the story of a friend, about someone whose breast inserts floated away from her in the pool. Given the expert’s warning that I shouldn’t swim with too much exertion, I decided that racing to catch up with an errant fake breast was probably inadvisable.

Quite apart from the untested properties of wet Brain Fluff, which could, I feared, mimic those of the gravity-sensitive, hand-knitted swimming trunks of my toddler years. (Whenever Bear has a bath, his fluff gets so heavy that it needs two of us to haul him out. I might sink, swimming with my Brain Fluff Softie.)

I also remembered how upset this very same daughter had been when (a) I had braces put onto my teeth (I don’t want an ugly mother!) and (b) the braces were removed from my teeth 18 months later (You don’t look like mummy anymore!).

So off I went to the pool, breastless.

It was bliss. I couldn't see properly without my glasses, but I don't think anybody stared. If they had, I wouldn't have cared.

Well, for the sake of honesty: I probably I would have cared, but I think it would also have made me even more determined to get used to it. I made a point of using the public rather than the private showers. In at the deep end. I am planning to go swimming every morning from now on.

Now all I have left to ponder is whether I will need my swimming cap when I’m bald.

I’ll get back to you on that one.

141. Breastless on the beach

I try to stick to the principle that this blog is about breast cancer. Which is why I haven't blogged for months. After all, cancer no longer affects my life. At all. Does it?

Doesn't it?

I suppose I've got used to being a cancer patient, or, as I should probably say now, a cancer survivor (although that makes it sound a bit like I've been in a nuclear war). It is two years since we sat in the doctor's office, listening with trepidation as she displayed her chemical weapons of cell destruction. Since then, almost imperceptibly, cancer has been normalised.

I nod my head knowingly when I read articles or books about the debilitating impact of chemotherapy. Yep. Been there.

I put novel items on my holiday packing list. Pills. Swimming softie.

Ah, yes, the swimming softie. Trying to cool down from the heat of southern France earlier this month, dashing in and out of the Mediterranean Sea, it did strike me that perhaps my lack of concern about a missing breast is worth noting. In answer to the questions I asked myself in July 2014 (should I wear a softie in the pool? should I wear a swimming cap when I'm bald?): Yes, I do wear the softie, in the same way as I wear a fake breast in my bra, to balance my outfit. It's just part of what my bras and swimming costumes are like these days, top-heavy on one side. Who cares. Perhaps my tops are not as low cut as they used to be, but I don't feel limited by this, and feel no less comfortable in the heat.

I thought I'd tell you this, just in case there is someone out there, reading this blog, facing a mastectomy and worrying about future scar-filled summers. Of course we are all different in the way we cope and live with what life throws at us, but I am truly unbothered by my single-breast status.

So, thankfully, is my family. I don't hide anything when dashing in and out of the shower. (Not much left to hide! Ha!)

One day, when playing Ticket To Ride and placing my train carriages in Eastern France, one daughter exclaimed: "I know which route mum has! Brest to Petrograd! She only has one brest, that's why she wants to go there!" We all howled with laughter. I thought it was genuinely funny, but I was also rather moved, because when your children can joke about your mastectomy, then you know that life is back to normal.

There was one other moment, during those few weeks in France, that I felt the aftermath of cancer treatment. There we were, in one of those huge supermarché's that seem to be designed for a family day out. I had been hot and bothered by my hair. It was too long, too outgrown, and inconvenient if you're swimming three times a day. It had (alas) started to grow straight again, and my attempts to hang on to my lovely curls were increasingly futile. I mean, look at it. Too much like a regretted perm.

June 2016

So, when the others were stocking up on sirop de pamplemousse, I spotted a scissor-wielding man idling in a place that had the word COIFFURE on it. I ran in and whipped out my iPhone to show him a picture on my blog. (Useful things, blogs.)

July 2014: Comme ça

"Comme ça!" I said, stabbing at the picture. And, for good measure, making snip-snipping movements close to my skull, "Très très courte!", in case le coiffeur was in any doubt about my desire for a complete change of image.

It was the first time I was aware that I actually missed something about my cancer treatments. The convenience, ease and summer comfort of very short hair. And if that dreadful year of treatment has taught me anything, it's that none of it really matters. Not the number of breasts you have, nor the length of your hair.

So, here we are. Happy holidays.

July 2016: Voilà

75. The bra shop

Buoyed by a half-forgotten feeling of wellness, I decided that today, Saturday, was the perfect day for filling up the emptied bra drawer.

Amazing how much difference a few extra days off the chemo makes. I can ignore the tiredness and keep going if I put my mind to it; even the aching leg muscles give in after a few streets.

There is strong evidence that exercise helps with cancer-related fatigue, I have heard from several authoritative sources. (I thought I'd throw that in, to stop you from wagging a concerned finger at me, telling me to take it easy.)

Having only the one bra is workable but not desirable. Now that I've got my long-term Bosom Buddy (let's call her Buddy for short, as Droopy sounds somewhat unkind, and it's not that bad), I resolved to get myself some proper mastectomy bras. And if I didn't do that today, I wouldn't have another chance for several weeks.

Chemo on Thursday. Scotland on Wednesday and Tuesday. And Monday is filled with hospital appointments: not only the usual pre-chemo chat with my consultant at St George's Hospital, but also a trip to the Royal Marsden Hospital (a specialist cancer centre) to discuss radiotherapy.

That appointment with the radiotherapy consultant came in the post yesterday, at long last.

Don't get me started. You wait for months, you chase it up several times, you get more and more frustrated that you still don't know whether the impending last shot of chemo spells the end of cancer treatment - and then when the appointment finally comes, they give you all of three days' notice. Never mind, I should have remembered Rule Number One Of Being A Patient: BE PATIENT. I have nothing else to do but sit and wait and wait and spring to attention when summoned. I don't have work to do, or a family to run, or a Christmas to plan. 

But at least the appointment doesn't clash with Scotland. I am desperate to find out whether (and if so when) I will need radiotherapy after the chemo.

So today is the day for shopping.

There are some excellent mail order companies for mastectomy wear. I'm discovering a whole new world out there.

But one of the perks of living in London is that you can visit the actual shop. So, feeling sprightly and grinning like a Cheshire cat, I walked to the tube this morning. I haven't been shopping for months, apart from the occasional impulse buy that would qualify as Truitje Kopen, also known as Top Shopping. I actually need the new clothes.

I got off the tube in an unfamiliar part of London. The long road didn't promise the glamour I was hoping for, with dirty-grey-or-brown buildings, the odd tattoo parlour and a suspiciously dark shop with a flashy red sign.

But once I found the mastectomy fashion shop, with its discreet window display, it was brilliant (and yes, glamorous).

I could hear one other customer chatting to a shop assistant in a cubicle. Her friend was chatting to the other shop assistant as if they were old mates. I know she was a friend, because I asked her: was she a customer, or the customer's friend? ("Both," she said after a bit of thought. "I've brought my friend here." This woman and her friend had got up early this morning, coming all the way from Cambridge.) 

This was the kind of shop, I felt, where you do ask fellow-customers that kind of thing. I can't think of any other shop where I'd be this chatty. But if you are going to discuss your personal requirements in a small and quiet place like this, you might as well involve the one or two other customers, because what else are they going to do? Pretend not to overhear, and not to be watching you? Best to behave as if you are, well, bosom buddies. Which, I suppose, we are. 

The shop assistant couldn't have been more helpful.

She let me browse (I wasn't just after bras, I wanted to try some tops and swimming costumes as well). She settled me in the changing cubicle. Plenty of space; fluffy dressing gown on a hook; tight-fitting T-shirt in a basket, presumable to see if your bra looks good under clothes (I didn't need it, having come prepared wearing my own tight T-shirt). She measured me, got me what I needed, fetched a glass of water when I was there for ages trying on almost all the swimming costumes in the shop.

The bras were great. I bought three, including one with a lacy modesty panel that will look good peeping out of my too-low-cut dresses. I also got a couple of swimming costumes, plus a foam prosthesis that weighs nothing and can be easily rinsed. It's fine wearing my current costume without Buddy, but I'll use the new costumes for lounging around a pool or on a beach, when I don't want to embarrass the children (and, let's be honest, I'll feel more at ease without the lopsided look).

A good hour later, I was outside again with my bulging bag.

Why stop at bras? Miraculously, I still had some leftover energy, so I got on the bus to Oxford Street.

Trousers! Jackets! Shirts! Scarves! I need some of these, I told myself; and even if I didn't, well, there's the old cancer excuse that always works well. I deserve it! I've got cancer!

The bus journey delivered one of those small rites of passage that might pass unnoticed. Every double seat was taken by a single passenger. When a young woman came up the stairs, appraising the situation, she walked to the back of the bus, past all the other passengers flanking an empty seat, and chose to sit down next to me. Clearly, I have now entered a stage of life where I am considered Harmless, with my old and tired looks, my wrinkles and raincoat and scarf. (This is in sharp contrast with my harmless son, who finds that women - it's mostly women - cross the road when they see him coming. Even when he's wearing his smart school jacket and tie. Tall teenage boys are scary; tired-looking middle-aged women are safe.)

When I came home again some hours later, my wallet was a few hundred pounds lighter, but so was my spirit.

And I've caught the clearing-out bug. That dustbin-full of bras has inspired me. (It's not just me: a blog-reading friend told me that she, too, has been inspired to throw out her old bras.)

Here is the drawer that always took such a lot of rummaging before finding the right things - and let's be honest, the right things are always the same things. It now even has space for those swimming costumes.

The blissfully clear spacious drawer

I'm not even stopping at drawers. This evening, I took all my clothes out of my wardrobe and only put back in what I might actually wear. I tried on all the tops and dresses I feared I could never wear again, and found that with my excellent new bras, they not only look fine, but they've got a different lease of life. Worth every penny, today's acquisitions.

But all those trousers that don't quite fit, the tops I've had for decades (not joking) and always liked, but honestly, will I ever give them another outing? The things that are lovely, but they've got holes. Out with them. The bin is full, and there's a teetering pile of rejects waiting to be taken to the charity shop.

Now I've got a plan. Once I'm better (and I'll need to be quite a lot better for this plan), I am going to move beyond wardrobes and do exactly the same thing with the entire house. New breathing space, new start. I can't wait.

The charity shop pile

157. A dodgy weather forecast

Well, so much for onwards and upwards. This is a tale of woe with some seriously unflattering pictures thrown in. If that's not what you're after today, I suggest you either skip to the final paragraph or skip this blog altogether. If you're bravely reading on, I suggest you finish your breakfast first.

The outlook ten days ago: Bright and sunny.

I'd been to the office for a trial day (sitting on a job interview panel for a new member of my research team), and how wonderful that was. Being with my marvellous colleagues (utterly reassuring to see how well they are managing in my absence) I am reminded how much I enjoy my job. I managed a whole long day. Floored in the evening, yes, but definitely looking forward to easing myself back into my projects.

I felt 110% positive and happy. It was good to have six weeks not only to recover physically from major surgery, but also to give my soul time to catch up with my body. I just re-read what I wrote about that last time round, four months post-cancer-diagnosis, and the process is the same now, but it's been a bit quicker:

What have I done to help my soul catch up? Probably this: sitting quietly, being on my own, meditating, swimming, sewing, listening to the rustling trees. And also this: hearing myself say it out loud. Reading back what I have written. I have cancer. That is another reason why I am talking so much about it all, and publishing my thoughts online.

All this is hard work. It may not sound like work, but oh, it is. I have had to excuse myself from my responsibilities as a mother, friend or employee.

Ten days ago, I was quite chuffed with myself. Look at me coping with all this! SuperWoman!

Husband and I decided to spend a few more days in East Sussex to relax and recuperate before going back to work. The night before disaster struck, I went swimming in the early evening rain when the sun broke through, throwing a huge rainbow over the North Sea. Here it is. It was blissful and I felt blessed.

The outlook nine days ago: Thunder

I woke up on Thursday morning with sky-high fevers untouched by paracetamol. How do people manage on their own? Thank goodness for Husband. I was unable to move, eat, drink, speak. What could it be? Not Covid (I checked). It didn't feel like flu. Could it be an infection of the wound fluid, still annoyingly sloshing around in huge quantities and showing no sign of abating? The next morning, Husband rang my breast nurse to ask. Was the area hot? Well yes, but so was the rest of me. Was it hard? Not really, sloshing etc. Probably nothing to do with the surgery then, was the verdict.

We sat it out for the day but by early evening, we were worried enough to ring the 111 NHS Helpline. They asked lots of questions I barely had the energy to answer and booked us straight into A&E. Husband drove with me lying in the back, having made it into the car, head on my pillow which would turn out to be a godsend as A&E departments only have hard chairs. I couldn't sit upright and there were no trolleys, so I lay down on the cold floor in desperation, Husband having retrieved that lovely soft pillow from the car.

By this time, it was obvious that the problem was indeed the breast wound. It had turned bright red. When I lifted my shirt to show the nurses, there was an Oh my goodness gasp.

Let me show you too, in the spirit of de-mystifying and normalising breast cancer. Is it pornographic to show one's bare breast online, if there are no bare breasts to show? I genuinely have no idea.  I may end up regretting this photo and taking it down. (Does one still have to cover up on the beach, or can one join the lads with trunks only? I have no idea about that either. There are no examples or role models out there.) Any honest thoughts or opinions are most welcome.

Long story short: emergency hospital admission, antibiotics, wound drainage.

The hospital bed felt like the Hilton after all that waiting on floors and on hard chairs.

The following day, they drained some 400ml of nasty-looking pus (bon appetit) and I was sent home with antibiotics. I can't tell you what a relief it was to be rid of the drag of all that fluid. It quickly returned though (thankfully not in the same quantities, but still enough to fill a coffee mug) and a few days later, I went back into hospital to have another 250ml drained, this time under ultrasound guidance.

I continue to be amazed and grateful for the NHS. It's nothing short of miraculous. There I was, not even in my own hospital (this was the Conquest Hospital in Hastings), and I had so many resources thrown at me, no questions asked, all free of charge. The ultrasound man and his helpmate spent about an hour carefully extracting all that fluid with an array of oversized syringes.

I spent the rest of the week just lying down.

The fatigue was (and still is) overwhelming. I feel like a deflated balloon. I've read a few novels and watched a bit of TV, but most of the time all I can do is just lie there. I've felt uncharacteristally despondent, tearful even. Being so weak and out of control has thrown me.

I missed Liz, my GP, who was a lifeline last time round (we ended up writing an article together about being a healthcare-professional-turned-patient) but she has since retired. I haven't needed a GP since then and don't know any of the current doctors at my local GP practice. Last month I just requested a sick note online and was promptly sent one by text message. This time, I asked for a telephone consultation.

As soon as she rang, I sobbed and sobbed. For goodness sake, I don't even know this doctor. But a good GP (and most of them are so good) really are invaluable, a safe space, someone to build a relationship with, someone who can get to know your story. She listened and resolutely signed me off work for another month. I was grateful. In the space of a week I'd gone from itching to go back to work, to crying just at the thought of having to get my head round those responsibilities again.

Outlook today: Expect rainfall

We went to the Conquest Hosital for a final check yesterday. The infection has settled. No more redness or pain, but frustratingly, the fluid ("seroma" by its proper medical name) keeps coming back. What to do about that long term? To drain (which would need to be done regularly, each time risking infection) or not to drain and wait for the body to reabsorb the fluid (which seems the à la mode approach nowadays)? Personally, I'd vote for drainage. What is to stop the whole thing getting infected again anyway? This week is not a nightmare I'd care to repeat. But it's probably best for my own breast care team to make that decision. So last night, we finally made it back to London, with an appointment at the breast clinic in two days' time.

I have taken the hospital's advice and tried to keep pressure on, which I hoped (in vain) would stop my breast from filling up again - but it does have the advantage of feeling comforting, reducing the dragging feeling, and perhaps (my untested theory) speed up healing by keeping everything in place.

Methods of pressure have been a bit Heath Robinson. It took me an hour to dismiss the advice to lie on my stomach. Even if I end up with a nice flat chest (which I wouldn't anyway - see above), I would have a painful permanent creak in my neck.

Next up was a corset fashioned out of an old folded-up tea towel, some button hole elastic and a bit of ribbon (amazing what you can find lying around, and the sewing machine was all conveniently set up so I could just about manage this). It sort of worked and might even qualify as a New Fashion Trend, but I ended up with an un-Jane-Austen-like bulge over the top (that fluid finding a new way in).

I've tried bandages fashioned out of an old sheet, but that was too much of an unworkable faf. The latest plan is Amazon's answer to my question about Chest Binders. I'm introduced to an intriguing and rather moving new world of young trans people supporting each other and being supported by families (My trans son is 12, what size does he need?) and ordered a contraption for Tomboy Lesbian Trans that promises to make my chest look flat and me look cool. It arrived today and was far too small, so I'm awaiting the next sizes up. We can but try.

Long term weather forecast: Sunny.

That's the promised positive final paragraph. I do believe in this forecast. But in the meantime, I'm going to lie down on the sofa, back to ignoring messages and generally ignoring life. See you later. 

73. The guessing game

Tomorrow would have been chemo day, but I've been given an eight day reprieve. You may remember, I'm due to chair a conference next week. It's in Scotland. I'll need enough energy to get that far: the train to Glasgow takes twice as long as the train to Paris.

It is hard to exaggerate the relief I feel at having a week off.

It's not even a proper week off, because that would imply not feeling ill. The past week was meant to be my Good Week, but Good clearly is a moveable feast. I vaguely remember how during chemo cycle 1, my Good Week involved long active days reminiscent of how things were, once, when I was at the peak of health.

Nowadays, good means not in bed.

It no longer seems to include long walks/swims/bike rides. Or, for that matter, short walks/swims/bike rides.

I am managing the sedentary parts of my life quite well (working at my desk, reading the newspaper, chopping onions, chatting to teenagers, that kind of thing), giving me an enjoyable illusion of not-being-ill. Until I get on my bike, as I did this morning.

I hadn't cycled for weeks. Worried that my tiredness is partly due to a lack of physical activity (well, doesn't that seize up your muscles and stiffen your skeleton?), I thought I'd do the five minute ride to the swimming pool. It took me twice that long. I almost got off to walk the rest. Short of breath, palpitations, and worst of all, leg muscles screaming at me that I should stop. It is not any better than last week; if anything, it's worse.

I never, ever thought that this might happen to me. Getting off my bike after five minutes? I never even thought that cycling qualified as exercise. It was just an easy means of getting from A to B. What happened to the girl who merrily cycled to England at the age of 19, from Amsterdam to Belgium and from Dover to Milton Keynes?

Swimming was better, but only just. Ten minutes is about as much as I can manage these days.

Mind you, it did make me feel better. But it also brought home how weak and fragile I am, and how glad I am to have this week's grace. With each round of chemo it takes longer to crawl back from the brink. This time, I have been much more of a hermit than before. I've been more careful about going out, not only because of the exhaustion but also because of the infection risk.

It wouldn't take much to dip into feeling useless, low, or even depressed.

Thankfully, I have avoided that pitfall so far (well, apart from the sudden collapses and the weeping in woods), but I can see how easily it can happen to the most cheerful of cancer patients.


We had quite a discussion with my consultant about the wisdom of delaying the final dose of chemo.

She was keen on giving me the highest possible doses of poison in the shorted possible time frame. I was keen on making it to Scotland, but not if it risked scuppering my chances of a long life. Would it?

Well, here's the difficulty: nobody quite knows. It seems unlikely that a couple of sneaky cancer cells escape extermination because the final attack was delayed by a week, but I suppose you never know. Chemotherapy, I have now realised, is an imprecise art.

"There might not have been any cancer cells to begin with," said my consultant. "Or if there were, they may all have been killed off with the first cycle of chemotherapy. Who knows."

Now there's a thought. I can't decide whether it's a happy thought (Hurray! No cancer cells! I'm cured!) or a sad thought (All that effort for nothing!).

There is a whole world of research out there. I've read some of the papers, but it doesn't really help. What do these studies show? Percentages of women who survive for 5 years, 10 years, 20 years. I don't like looking at the statistics, because in my mind, I have a 100% chance of surviving 20 years. Actually, make that 40 years.

Research papers on treating women with early stage breast cancer talk about survival rates of anything between, oh, 65% and 98%. (I notice that none of them say 100%. Shame.) It depends on the cancer, the treatment, the era, the country. So many imponderables - it's best not to ponder.

I remember discussing with my surgeon whether I could delay my mastectomy. She rattled off some statistics (they sounded quite good), but then she said, wisely: "It's only numbers, Irene, and you know it could just be your number."

So they're guessing, really, all these cancer doctors.

And because it's so complicated, I'm happy to leave the guessing to them - most of the time. But in the case of this week's delay, I listened to my breast care nurse instead.

"Oh, she would say that," she laughed dismissively when I told her that the consultant wasn't keen. "She's a doctor. But honestly, lots of people miss a week. They pick up an infection so they have to delay things. It happens all the time. And if going to your conference makes you feel like a normal human being again, that's worth something, isn't it?"

I wouldn't go as far as predicting that I'll feel normal, but in this case, I'm happy to risk my chances of living another 40 years.


I am not completely let off going into hospital tomorrow, because I have been given an appointment for the Breast Prostheses Clinic.

That's what it says on the letter, Prostheses, plural. I suppose some women do need them in plural.

And yes, you've guessed it: it's in Clinic 2. Right next door to Wish You Were Hair, presumably. I'll let you know.

36. Hair Today

The first body part to surrender its hair is not my head, nor my legs, but somewhere in-between. That's right, ladies: if I were at all worried about my bikini line, I need not worry much longer.

As I stood in the swimming pool changing cubicle this morning, drying myself, I noticed that it wasn't just water coming away with my towel.

I checked the hair on my head, and whilst it wasn't handfuls, it was definitely very easy to pull out the strands. It's bizarre, the accuracy with which this can be predicted. Two to three weeks, they said. This is day 16. My daughter has been pulling my hair occasionally, just to check (and so, between you and me, have I). Yesterday, it was all very firmly attached.

Coming home and demonstrating the free and easy Brazilian, my husband observed how alarming it is that, despite me looking and feeling fine, there is clearly an unseen poisonous war raging inside. He is right. My energy levels have miraculously returned. I am back to my usual 50 lengths in the pool, cooking dinner and hanging out the laundry. I was beginning to think that my body had conquered the chemotherapy. Perhaps my hair might not fall out at all (see above, firmly attached etc).

There should have been a clue in my blood results, which showed that the day before yesterday, my white blood cells were still few and far between (meaning that I am still highly prone to picking up infections, as those cells are needed for their germ busting properties). I can't feel their absence either.

Having established that hair loss is no laughing matter, the only way to cope, really, is by laughing.

And laugh I did, right there in the privacy of the changing cubicle. This was thanks to my stylish and sensitive friend, who agreed with me that Wigs Clinic is a ghastly name for a place that should make women feel better about themselves.

"Have you noticed," she pondered, "how hairdressers often use a pun for their salon name? Perhaps we could re-name the Wigs Clinic. How about Hair Today (as in Gone Tomorrow)?"

Ah, yes. Fighting misery with words: that I can do. We were on a roll. How about... 

The Hairy Situation
Keep Your Hair On
Hair You Go
I'm Out Of Hair
Faking It
The Hair Raising Clinic
Neither Hair Nor There

Or, my personal favorite: Wish You Were Hair...

That's why I stood there in the swimming pool, grinning like an idiot. Because the Wig Appointment is this afternoon, and with my hair coming away in my hands, a visit to Hair Today could not be better timed.

137. Taking each day

This is the fourth time I have sat down at my computer to write a blog post.

First of all, there was the Happy Christmas one.

Then the Happy New Year one.

Then the "Hope you've all had a lovely Christmas/New Year" one.

Each of these drafts was deleted. I'd envisaged something Meaningful and Profound, along the lines of I've looked back on my year / forward to the next year / reflected on my colourful cancer experiences / learned so much / let me tell you all about it.

Christmas, then New Year, seemed auspicious times to write such profundities. Nothing profound was forthcoming.

Alas, I thought. Tomorrow perhaps. But now, it seems to me that you've had a lucky escape. Who wants to hear about someone else's deep and meaningful thoughts? You'd only compare them to your own thoughts (the ones about chocolate and shopping and the latest whodunnit) and find yourself wanting.

And what cancer patient wants to hear about the life lessons other cancer patients have learnt? You'd only sit down exhausted and find yourself wanting even more.

The trouble is, life's lessons are alarmingly easy to forget.

I'm not sure I've learnt anything new during the past few years; it's just that some things become blindingly obvious when you are ill, because you don't have the energy to rush around and Do Stuff.

The absolute need for the support of family and friends, even if you've always pretended to be Superwoman; and the deeply life-affirming discovery that such family and friends really are there.

The joy that can be found in the smallest of things (well, you don't have a choice, because the big things have been cancelled).

The need to take each day as it comes.

That last one is nothing new either. I've even written about it, well before my cancer diagnosis, in one of my books:

"People with cancer need to find ways of living with the knowledge that life may change in a way that is unimaginable and devastating. One way of coping is to learn to ‘take each day as it comes’. It is not unusual to hear a cancer patient say, ‘I am living much more in the moment now. I try and enjoy every day, because you never know what will happen next.’"

(The point I went on to make was that many people with learning disabilities are rather good at living in the moment, and therefore have an advantage when it comes to coping with cancer.)

So, I'd like to be able to say "Right folks! I've cracked it! I'm taking each day as it comes!"

No such luck. With each bit of new energy comes a new expectation. Aha! I can do full working days again! Let me plan a new project, cook dinner, do the shopping and then clear out the garden at the weekend. Oh, and write that deep and meaningful blog post."

The trouble is, when you're physically and mentally healthy, life actually involves planning and looking forward to things. The trouble is in knowing how healthy and able you are. Personally, I haven't yet figured it out.

So, with each new expectation comes frustration. Because A doesn't necessarily lead to B. Swimming 40 lengths one day doesn't mean I can swim 50 the next (in fact it usually means I can swim none the next). It's hard to take that next day as it comes.

New year's resolution: I'm cancelling my swim membership this month. Yes, I'll still swim, but no more than once a week (it used to be three or four times a week), because instead of invigorating me as it did in the past, now it just exhausts me. Cue failed expectation, cue frustration. I've kept the swimming going all through my treatment, but I've taken so many days as they came (and they came without the 50 lengths) that I'm admitting defeat. Or, if I'm into rephrasing things positively, focusing my energies elsewhere.

There's one small triumph though.

Just before my cancer diagnosis, I started practicing for my first ever music exam. I'd been learning the cello for three years - fiendishly difficult; being able to play other instruments (guitar, recorder, piano accordion) was no help. I wanted to set myself a target, plus, I hoped it would give my efforts a bit of gravitas in the eyes of my children, who have worked through many such exams.

It was all put on hold. I didn't play for a whole year. I tried a few times, but I discovered that playing instruments (and singing, for that matter) is physically rather exhausting.

But last summer, I picked up my cello again. And just before Christmas, I appeared before the examiner.

Readers, I passed my grade 3 cello exam with distinction. This is an unashamed boast. It involved hours and hours and hours of practice, and I'm rather proud of it.

Have I learned any lessons from having breast cancer?

Perhaps this: if you have a choice, then focus on the things that give you pleasure and energy. I missed playing my cello when I was ill, but enjoyed Escape To The Country. I don't have time for Escape To The Country now. There's a cello to play.

Who knows? One day, I might not have time to play my cello, because there is the daily swim to fit in. I'm trying not to plan for it though.

There are 357 days of 2016 left. I doubt I will take each one as it comes, but I'll try. Wish me luck.

Happy new year.

142. In a tight spot

With my growing enthusiasm for sea swimming comes the thought that perhaps a thicker layer would be a good idea.

I've got gloves and socks to stop my extremities falling off, but some extra core warmth might allow me to stay in the water a little longer. At least, it might stop my kidneys from shriveling with cold and me shriveling with them.

An internet search leads to the arrival of a kind of sleeveless costume made of wetsuit material. I like the idea of sleeveless. I've got a long-legs-long-arms affair for winter months, but the joy of summer swimming is the feeling of flowing water.

It's no good. Too baggy around the crotch; too tight across the shoulder. Another make perhaps, or another size? I puzzle over the "check your size" charts. Nothing measures up to my measurements, so I ring up one of the wetsuit suppliers who claim to be able to advise customers with non-standard shapes.

The woman on the phone is equally puzzled.

Her computer tells her that with my height, I need a size 16. I almost laugh. "SIXTEEN?! Are you sure? I usually take a size 12, or 14 at the most."

Hips? Hm. Waist? Hm. Chest? Hmmm.... Yes, she agrees that the size 16 expects rather more filling in those areas.

"What bra cup size are you?" she asks, perhaps hoping for the DD cup that would satisfy her charts.

Well, there's a question. "Uhm..." I mumble something about A and B cups, adding "but I've only got one of those."

Sometimes, you stumble across unexpected hazards like this. She is as taken aback by my answer as I am by her question. Soon, she gives up.

"It's probably best," she decides, "to go to a shop and try them on."

I locate a wetsuit shop in central London and hop on my bike.

The shop's sale assistants are all young, fit-looking and male. I explain my quest. Short legs, no sleeves, like to feel the water but must keep my core warm, etc. They don't have such a garment, but perhaps I could try on a vest and shorts? Good idea.

"They should be as tight as possible," young Mr Fitness instructs. "Try a size 10 or 12. I'll just be round the corner if you need any help."

I can just about squeeze my way into the size 12 vest. It feels quite nice, but Mr Fitness is not impressed. "I can see some room at the back!" he says. Yes, he's right. (I can also see some room on the right side of my chest, but he just points out the roomy back. Perhaps he hasn't noticed.) Why not try a size 10?

There are no zips or other fastenings. I need to take my glasses off in order to get in. Once I've peeled down the waist, I admire the vest's breast-banishing tightness. No cold water slopping around empty spaces in this thing. 

I emerge from the changing room to show Mr Fitness. "Yes," he approves, "that's better."

But oh dear. How to get out of the wretched thing?

There I am, quite literally helpless in the changing cubicle. I've managed to pull the vest up above my winking wonky chest, but no further. In the mirror, I can just see my red face looking anxiously over the rim of the inside-out garment that is now wrapped around my neck, holding me tight, trapping my arms against my ears. No amount of tugging or contortions will release me from its grip. I can't pull it back down either. Several minutes later, my chest is weeping tears of sweat. If keeping you warm is this garment's main purpose, it is Mission Accomplished.

But what to do? Can I ask Mr Fitness to help pull, hoping he'll ignore my somewhat unconventional appearance? There's not quite the same ambiance here as in the Mastectomy Bra Shop, where an understanding woman shop assistant remained within discreet earshot of the changing cubicles. In this large wetsuit shop, I'll have to wander out of the cubicle and into the racks of sporty clothing to catch Mr Fitness' attention. My current bare-chested hands-up appearance would not do much for sales.

Oh dear oh dear oh dear.

Finally, with a desperate tug, I manage to free half an arm. Then a whole arm. Then my head. Then, easier at last, another arm.

I go home with a proper shortie. And just in case you're interested: size 10 was OK, but in order to banish all empty spaces, I have ended up with an unprecedented size 8. Perhaps I should ring that woman back and tell her.

Yes, it has sleeves. But gloriously, it also has a zip.