Friday, 3 November 2017

New blog!

One more post, everyone. Just in case you're interested. I enjoyed blogging so much that I have started a new one.

The new blog is work-related. My work can be a bit of a conversation killer, as it involves thinking about death, dying and bereavement - so it won't be to everyone's taste. But some of you may want to follow my trials and tribulations at work.

My first New Blog post is about Brexit. I've just become a British Citizen, but it has taken a lot of time (and money) to get there... Read all about it here!

Saturday, 3 June 2017

146. Owl's Last Post

Could you tell me about your cancer? a family friend asked recently.
I never really dared to talk to you about it at the time. I backed away. What happened?

His question puzzled me. What happened?
Cancer happened, I had the treatments, I got better. The End.
What exactly did he want to know?

What he wanted to know was: What is it like, as a woman, to go through the loss of a breast? How did I cope then, and how do I cope now? What is it really like to go through cancer?

Well, I said. It’s fine. Really, really, it’s fine. Actually, having a mastectomy was the least of my troubles. You see, my mother was dying…

And I was off. I hadn’t told that story for a long time, but this week I’ve told it twice, not just to the family friend but also to the new post-mastectomy friends I went away with for the weekend. Both times, the cancer details were quickly told; it was the story of the dying mother that had us all reaching for our hankies. When I talk of my mother, I am back in that room with her, saying my final goodbyes, and she reaches for my hand and kisses it, and she says yes, I’ll pray for you when I’m in Heaven.

She is still with me now.

When I meet new people, they seem taken aback by my breast cancer story. I slip it into the conversation without thinking (“Shame I lost my chemotherapy curls”). At the time, this blog helped enormously, because everyone knew what was going on without me having to tell them again and again. Coming to terms with having cancer and going through the treatments was exhausting beyond words, physically and emotionally, so I had no space or energy to talk to anyone beyond my immediate family; but I still needed to feel my friends were with me somehow. The blog did the trick and had the added bonus that I didn’t even have to explain myself to strangers, as even people who didn’t know me seemed to be reading it. But recently I have found myself explaining the basics with some regularity.

How long ago? people ask me. Time is elastic these days so I have to work it out – let’s see – it was 2013, no 2014 – I make that three years.

What did you have?  Oh, you know, everything.
     Lymph nodes removed.
     Hormone treatment.
Rattling off that list stops me short, too. Blimey, listening to that, I suppose you’d call me a proper cancer patient.

But I don’t look like one, and I no longer feel like one. Three years after the diagnosis brought my life to a screeching halt, looming large and dominating every minute of my days for well over a year, it is receding into the mists of memory. I had my annual check-up last month (the full MOT – extensive prodding; mammogram; ultrasound) and all has been declared well. My next appointment is in May 2018.

I feel well, physically and emotionally. I’ve just spent a wonderful weekend cycling, swimming and singing in France (a choir trip) and it made me feel strong, healthy and happy. I’m back! It’s taken three years, but now I’m back.

Cycling and singing in France last weekend
So I reckon that’s me done with this blog. Finally, the title has come into its own, as I hoped and trusted it would.

But before I sign off, I owe you, my readers, one last moment of reflection. You, who have supported me, sent me warm messages, left meals on my doorstep, asked how things were going, read my blog, worried about me: you need to know that I have come out at the other side, and I am fine.

So, this is Owl’s Last Post and this is me, looking back and looking forward.

How has breast cancer changed my life?

What I most want to say is this: it hasn’t. I’ve been thinking about this for a long time. Am I deluding myself? In denial perhaps? Deliberately ignoring any grief over a lost breast and lost energy and a few lost middle years, and blindly busying myself, hoping that it will go away if I don’t think about it? Because we all know how it is supposed to be. It screams at us from the newspapers and the women’s magazines.

After I had cancer, I…
…gave up my job and started doing what I’d always wanted to do
…started living each day as it comes
…realised the importance of family – nothing else counts
…started fundraising/volunteering/praying/smelling the roses
So….THANK GOODNESS for cancer!

I’m afraid I have to disappoint you, as I had no such life-changing epiphanies. I am not glad that I’ve had cancer (truly, I could have done without it). But I don’t regret it either. There is no point regretting it.

It was what it was; it is what it is.
Things happen; no life is without its hurdles and challenges.

I’ve never asked, “Why me?” but rather, “Well, why not me?” And since it’s me, I might as well try and live through it as well as I can. It all makes up the patchwork of life. You cannot have all the easy and happy times without the difficult and sad ones; they belong together like two sides of the same coin. There can be no daytime without night-time, no light without darkness, no music without silence. No living without dying.

Several people have asked me recently whether I am, perhaps, a masochist (prompted, I suspect, by my new penchant for cold-water-swimming and a determination to cycle the 70 miles to the choir gathering in France rather than hop into someone’s car). I’m not sure about that, but I do know that I don’t just need light. There are times when I need the darkness, the night-time, the silence, so that I can put the light and day and music into perspective. And yes, I also need to acknowledge death, and sit with it for a while.

None of that is new, and none of that has changed by having cancer. I suppose having nursed hundreds and hundreds of people through their final days, most of them dying of cancer, has given me years of reflection on the meaning of life and death and the value of relationships. Still, people (myself included) are keen to hear what I’ve learnt during the past few years, so here is my list, for what it’s worth.

1. I don’t know what it is like to have cancer.

Don’t ask me for advice. Don’t count me in as a member of the cancer club. I read other people’s cancer stories, and whilst I might recognise some of their descriptions (the ghastliness of waiting for test results, say, or the way chemotherapy makes you want to crawl into a little dark hole), I often think, Very interesting but I didn’t feel like that.

I once wrote a book about people with learning disabilities who had cancer. I’d wanted to understand what their cancer experience was like. I discovered that this was not possible without first understanding what each person’s life had been like. I now realise that it’s the same for everyone. My cancer experience is completely unique, as it was a specific diagnosis/prognosis sitting at a specific point in my life story. I have no idea how it would be if I had cancer again. The cancer would be different, the prognosis might (Heaven forbid) be different, and most importantly, I would be different. I wouldn’t be a 50 year old woman with school-age children and no experience of how to be a patient.

So, if you ask me for advice or guidance because you, too, have been diagnosed with cancer, I’m afraid I can’t give it to you. All we can do is listen to each other’s stories with an open heart, and support each other as we all try to find our own unique way through troubled times.

2. Alas… I am not superwoman

That’s a hard pill to swallow. I like being superwoman. I don’t recognise myself when I’m weak and need looking after. Looking after people is MY job, surely? It is hard to change one’s nature, though. I’m told that among my first words were a rather determined “Sellef doen!” (“I do it!”). And if I’m brutally honest, I will have to admit that my way of coping with cancer was along the lines of “I can do this! I’ll do it myself! Look at me being super-good at having breast cancer! Blogs and everything!”

I do try, though, to accept that usually good enough is really good enough, and sometimes perfection comes at a price not worth paying.

3. Other people like it when I’m not superwoman

That’s the sweetener. I am reminded of my mother when one of her relatives said not to bother with birthday presents, really, don’t make a fuss: “You shouldn’t deprive others of the joy of giving!” mum told her sternly. There’s an art in receiving. I’m still not very good at it, and I freely admit that I am delighted I can now at least pretend I’m superwoman again – but I also try to remind myself that other people (a) like to look after me sometimes; and (b) are reassured when I fail at things. It never occurred to me before that people who look like superwomen can make others feel like failures, and being in need of help gives others the chance to help me and feel good about that.

4. I am loved

To be loved unconditionally by family and friends, and to experience their warmth: that is a humbling and beautiful thing to discover. Even people I only knew superficially rallied round. Friendships have deepened.

Conversely, one or two friendships that I thought were strong and close did not survive the test of cancer, and that has been surprisingly painful. Perhaps there was too much of a role reversal – I, who was always able and happy to listen to my friends’ stories and troubles, was completely unable to do that for the best part of a year. Most friends understood this and supported me (see point 3), and once I started feeling better, I could (and wanted to) listen to their stories again. But I have found it very difficult to re-connect with the friends who turned out to be unable to listen to me, or even to send me the odd message, when I was ill. They made me feel too much like a good-weather-friend.

I completely understand and appreciate that not everyone is able to be with a desperately ill friend. Perhaps you have something difficult happening in your own life that makes it too hard to listen to a struggling friend. Perhaps you feel really uncomfortable with misery and tears and helplessness, when there is nothing you can do to make things better. Most cancer patients will understand that. But if I can give you just one piece of advice, it is this: let your friend know that you are thinking of her. In whatever way suits you (and her). A card, a quick phone call (preferably not in the week post-chemotherapy), an email, text or Facebook message. Not just once, but again and again. I loved texts and Facebook messages; they were my lifeline. I’d lie in bed, too weak to speak, but enveloped in the warmth of messages coming up on my iPad: they felt like a life-line.

5. I am not ready to die.

I have wondered about this for decades. Trying to imagine that I had to leave family, friends and life behind was part of my training as a hospice nurse. Write your own obituary, that kind of thing. We will all die one day, but we rarely know whether we are ready, and most of us never think about it. Who imagines they are going to die in their 40s, 50s or 60s? Or even in their 70s? Having the distinct possibility flash before you, even just for a couple of days (ah, those dreadful days of waiting for test results) – that is profoundly shocking. What I discovered is that I would possibly be able to come to terms with dying sooner rather than later, were it not for my children. The thought of leaving my children before they are well into adulthood, the thought of not being there for them when they navigate the world, when they have children of their own: that is too painful to consider. So thank goodness, THANK GOODNESS that my cancer was discovered early enough.

6. I don’t miss my breast.

Just in case you are wondering, like the family friend who asked that question. Once, a good friend who saw me strip down to my bra exclaimed, You really can’t tell you’re missing a breast!” but then added thoughtfully, “but perhaps you’re not missing it?”

Indeed, I’m not. I don’t feel any less of a woman. Perhaps it helps that I have never felt defined by my appearance. I’ve got used to my scar and my one-sided flatness. This is me now. The only thing that frustrates me is that the scar tissue still feels quite tight, and that I have lost sensation around the scar and a large area under my armpit, which keeps me vaguely conscious of the mastectomy.  There is also some un-going tingling in the fingers of that arm, which may or may not be connected to the surgery (there has been a string of scans but no clear conclusion). On the upside, I can now be tickled under my arm and keep a straight face, which is a vaguely interesting party trick.

7. It could be worse than cancer. Really, it could.

Cancer patients are much better supported than patients with, say, mental health problems like depression or anorexia. They receive a lot more sympathy than people living with addiction or schizophrenia.  I’ve written about this before so I don’t need to repeat myself here, but I’ve thought about this a lot. In fact whenever people ask me now “How are you?” in that genuine and concerned voice, I feel a bit of a fraud. Because cancer is something I’ve recovered from. It no longer affects my daily life. I think of people I know who have chronic physical or mental health problems, and I’m just grateful that I suffered with something from which I could, and did, recover.

8. The NHS is wonderful and precious.

Need I say more? I am so grateful that I have freely received fabulous NHS treatment costing hundreds of thousands of pounds (is my guess) and involving vast numbers of staff and volunteers. The NHS saved my life. Immigrant nurses and doctors saved my life.
As an immigrant myself, I am not able to vote in this country (I’ve finally sent off my UK citizenship application, but I won’t bore you with those details as it could be a whole other blog in itself – When Owl Lived In Cuckoo Land perhaps). But those of you going to the polls this Thursday, please think of that. Don’t vote for a party that wants to privatise the NHS and makes immigrants feel unwelcome (even I have felt unwelcome here for the first time in decades, as Owl in Cuckoo Land would concur). We all need each other.

Dear friends, that’s it.

I don’t feel the need to write any more. Owl sits on the book case in our bedroom, quietly gathering dust. Let’s hope I can leave him there for the next 30 years.

Thank you for listening to me.
Truly – THANK YOU.


Thursday, 6 October 2016

145. Flashbacks

We have emerged from the surgeon's knife. It was fine.

The hardest, perhaps, was the nausea (courtesy of a bright blue drip needed to light up the glands for the surgeon's benefit). It's so mild, it's hardly worth writing about - but it reminded me unpleasantly of the vile coloured chemo liquids poured into my vein, not helped by having the needle stuck into that very same hand.

Come to think of it, even the drip with normal fluids made me feel queasy with flashbacks. That was unexpected. I begged the doctor to take it down, promising to drink and drink.

But overall, we're doing ok. And following in Owl's footsteps, Ostrich has made himself very popular with the nurses. 

Wednesday, 5 October 2016

144. When Ostrich Had Hyperparathyroidism...

...doesn't have quite the same ring to it as When Owl Had Cancer, so we won't give him his own blog, but allow him to post on Owl's.

Once you put a spotlight onto your inner workings, you start finding things you would never have guessed. In my case, too much calcium in my blood. If you've had breast cancer, that sort of things rings alarm bells in doctors' minds. Oh dear, has the cancer spread to her bones from where it is merrily releasing too much calcium, leaving those bones aching and prone to breaking? When breast cancer goes travelling, it's bones, brains and lungs that are top of the destination list.

But no: the explanation turned out to be far more innocent. Nothing to do with cancer. It's one of my parathyroids that's grown out of control. It is taking its job (which is: taking calcium out of my bones into my blood) far too seriously. Will it kill me? Certainly not, but left to its own devises, it will cause brittle bones prone to falling apart.

But not to worry, Doctor said: they will just do a "little operation" and take the offending article out. I'll still have three left.

All this has taken the best part of a year to figure out, involving numerous scanners, blood tests and discussions. And now here I am, on a tropically hot surgical ward wearing those silly tight stockings and listening to the nurses doing nursy things at the nurse's station a few meters away. No doors on this ward, and therefore not much sleep either, I reckon.

"Is Owl coming?" my daughter asked. But thankfully for him, he is fine. It's Ostrich, we thought, who needs the neck surgery (which is where parathyroids live). Daughter made him several years ago and has noticed that his neck is a bit wonky. Nice to have company.

I've been rather looking forward to it. Now that I've learned how to be a patient, it's quite appealing to give myself over to that role without the worry of, well, dying.

No cooking. No work emails.

I'm a bit surprised by what it involves though. Little operation? Bigger than the mastectomy, it seems. Then, I just turned up in the morning and was home in no time, carrying my drain. Now, they want me here the night before (so here I am, fit as a fiddle but looking like a patient), keep me in for several days, and keep me off work for a month. 

It's midnight and the bleeps are sounding left, right and centre; I'd forgotten about that. And about the tropical temperatures. I'm guessing that tomorrow, the appeal of being a patient will have faded somewhat. But worried? 

"Oh dear," said friend after colleague after friend, "you must be so worried."

Don't worry. This, my friends, is a walk in the park compared with what Owl had to go through. I'll let you know how it went.

Wednesday, 24 August 2016

143. The communal changing room

I used to quite like communal changing rooms in swimming pools.

Rooms marked Women. Put a bunch of naked females together and that's what they are, WOMEN, simple and straightforward. Ladies is for places where females can be discreet, like toilets and one-person shower cubicles. 

Women can shower with abandon, but should ladies leave their dress on...?
Stripped of the clothing that could have given you clues about who they aim to be, women in communal showers are sisters. The older they are, the more sisterly they become. It's the young and sleek ones with the skimpy bottom-baring bikinis who are the most anxious to cover their nakedness beneath complicated towel arrangements whilst trying to get their pants back on. They keep themselves to themselves. But once the flesh expands and wrinkles and heads southward, most women (at least the ones that get up in the early morning to clock up a few lanes in the pool) seem happy enough to let it all hang out whilst merrily chatting about this and that.

Such acceptance of women's bodies, whatever their shape or size, has always appealed to me.

But my local swimming pool doesn't have communal changing rooms, and I had got used to being a lady.

Female patients are ladies.

I've got a stack of correspondence to prove it, as nowadays you get copied in when doctors send each other letters about you. I'm quite a nice lady, apparently.

"Dear GP, I reviewed this very pleasant 50 year old lady today in clinic..."
"Thank you for referring this nice lady..."
"Dear GP, I saw this lovely lady..."

Etc etc. (Would they ever write, "I wish you hadn't referred this grumpy gentleman"?)

I have sometimes wondered to what extent my theoretical embracing of the we-all-accept-our-bodies-and-let-it-all-hang-out philosophy would hold up. It's all good and well in the privacy of my own home, but baring my non-breast in public is yet another hurdle. You'd have thought that two years post-mastectomy, most hurdles have been taken, but this was one I had yet to jump. 

I jumped yesterday, when I went to Brockwell Lido in Brixton.

There they were, the showering women, merrily displaying the effects of childbearing and decades worth of gravity. I've seen most things in such changing rooms. Old, not-so-old, wobbly, large, skinny, missing limb. But come to think of it, never a missing breast, or even a fake breast. Do women not swim in lidos after breast cancer? Is it against the etiquette?

It took a bit of deep breathing and talking to myself, but in the end, I just stripped off like everyone else. For many reasons.

Practicality. (I mean, who keeps on their pants when showering at home? Exactly.)
Not drawing attention to myself. (Trying to wriggle beneath a towel would do precisely that.)
Principle. (Repeat after me: I. ACCEPT. MYSELF. THE. WAY. I. AM.)
Setting an example to other women, who might one day face these issues themselves. (Don't worry! There is life after a mastectomy!)

And, fundamentally, freedom. Who cares, and all that.

The thing is, after all that emotional effort, I don't think anybody noticed.

I dressed my bottom half first and left my bra till last, just to make the point. Come on sisters, I'm making a statement here! But it seemed that I was making the point to myself and myself alone.

It was almost disappointing.

Monday, 22 August 2016

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.

Sunday, 31 July 2016

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