151. The Dolly Parton option

Tomorrow is mastectomy day.

The thought occurs that today is the last day of my life when I need to wear a bra.

Loss or liberation? Will I mourn the loss of a cleavage and try to emulate the suggestion of a shapely front, or celebrate the ability to do naked star jumps without a complaining chest? I have no idea, and I'm intrigued to find out. It could go either way, but my money is on Liberation.

What I'm wondering is (a) what I'll look like flat-chested, (b) how noticeable it is, and (c) whether I'll mind if it's noticeable. I am making no assumptions here.  So far, my attitude has firmly been of the This Is Me variety, love me or leave me. Grey hair, wrinkles, mastecomy scar? They speak of a life lived long enough to have earned them, of challenges overcome, like badges I've earned.

But every woman has to find her own comfort zone.

I am not making any firm predictions. Since my first mastectomy-without-reconstruction, I have always worn a prosthesis to match the remaining breast, contrary to my general au naturel approach in life. The lob-sided look is not great, even with my modest A-cup.

Wearing a relatively small prosthesis is not a problem. Who knows, I may have been less keen on the unreconstructed look if I had been blessed (or burdened) with a more generous cleavage. When I was fitted for a proper prosthesis (there is a special clinic for such things), I picked up the largest specimen when Prosthesis Lady wasn't looking, and found it unexpectedly heavy. Choices are perhaps harder and less straightforward when your breasts are quite literally a bigger part of you.             

There are times when I couldn't care less. Swimming with a softie just feels ridiculous and unnecessary, so in the pool or on the beach I no longer bother with a matching pair. The communcal changing room is no longer the challenge it once was. In all these past seven years, no woman sharing the lido experience has ever batted an eyelid at my scarred chest - although it still strikes me as odd that I have never, ever, seen another woman there with any sign of having had breast surgery. Not sure where they all are.

I have found that doctors and nurses DO make assumptions.

When the surgeon told me I needed a mastectomy all those years ago, she described the operation: "First I do the mastectomy, then I get the plastic surgeon to do the reconstruction on the same day." She launched into a detailed description of what that was like, taking bits of shoulder muscle to mould into a nice shape, or failing that (as I protested that surely I'd want my shoulder muscle to do muscly things in my shoulder) taking a bit of fat from... from where exactly? Not much of that to spare, so I might end up with half a buttock. That smacks decidedly of robbing Peter to pay Paul. I had to be very firm about my refusal of such options ("Are you sure? You can think about it!").

I found the thought of walking around with a permanent implant of some sort equally alarming. It's a deeply personal choice, and oh, I do understand why many women choose differently.

What I don't understand is why I always had to work quite hard at convincing the hospital staff of my choices. Once convinced, though, they applauded me. "You're so right!" they'd say. "Having a reconstuction is not an easy option." (Why do you only hear about the drawbacks AFTER you've refused? Same with the Cold Cap, which is meant to stop your hair falling out. I had to keep telling the nurses that I didn't want it, after which they conceded that not only was it indeed highly uncomfortable, it often didn't work anyway).

This time round, though, there was the Chief, who took one look at my flat right side, felt the lumpy left side, pronouncd that surgery was needed, and happily assumed that I wouldn't want a reconstruction this time either. Which makes the surgery so much easier - I'm predicted to be back home the following day. (With a reconstruction, I'd be in hospital for a good week).

"You can just wear two prostheses," he said. 

"I don't think I'll bother," I told him. "Now that my flat front will be nicely matched."

He looked at me and pondered, "Well, you might want to wear it when you're going out. You could have a Dolly Parton."

My husband and the breast nurse (new to the job and looking somewhat taken aback by this conversation) probably didn't dare laugh until I did. I thought it was genuinely funny.

There's a thought, though. If you're going to pretend that you have a frontage, why copy the old building? If there's nothing to match, I can be the architect and the world's my oyster.

When it came to the follow-up discussion with the nurse - they take you into a room with tissues after you've heard the surgeon's verdict, to talk through some of the detail - she opened the drawer to give me a new softie. (That's breast cancer jargon. If you don't speak Breastish, see here.) What size did I want?

I made the rash decision not to go for the Dolly Parton option, so I reached into my bra to pull out the current pretender. Something to match this one. In the end, she gave me two of the same size, which is more generous than last time, when I begged in vain for a second softie.

Later, I passed the Dolly Parton option by my daughters. Hm, perhaps not quite your style, was the verdict. Looking at this photofit of my possible future self, I think they may be right. So, whilst keeping my options open, you'll be relieved to know that Dolly Parton is crossed off the list.

 

150. Cancer in times of Covid

I've lost count of the many times I watched the news and said, Thank goodness I had my cancer treatment THEN and not now.

All these reports of Covid-filled hospital wards whilst cancer patients had their surgery postponed. It's bad enough nervously counting down the weeks to your operation without the stone-sinking worry about what your cancer cells are up to whilst your doctors and nurses are busy elsewhere for who-knows-how-long. It's bad enough coping with chemotherapy playing havoc with your immune system, without the added stress of shielding. And it's bad enough being rushed into A&E with your husband to help you. I couldn't bear the stories of desperately ill people, all alone in hospital. Dying alone.

Thank goodness I had cancer when I did, and not now.

But now? Well, I'm amazed. The words COVID and BACKLOG are enough to send any cancer patient into a mild panic, but I only heard those once, when I first tried to get seen at the breast clinic. Since then, I've been whizzed through the system faster than you can say Hello.

Eight years ago, there were six weeks between showing my suspicious lump to the surgeon and the surgeon taking it out. This time, it's just five weeks.

Last time, I sat in overflowing waiting rooms for hours. I learned that patients have to be patient: 

Sometimes it seems that appointment times are simply academic: a vague indication of whether you should come in the morning or in the afternoon. 

This time, I can take my pick of empty seats and have yet to wait longer than 15 minutes. Popping down from my office to the scanning department, at exactly the allotted time, the nurse was already waiting for me. Quickly done, she sent me to the CT scanner nextdoor: "Might as well get you through that now, saves you having to come back later."

Last time, my pre-operative appointment consisted of hours of waiting to be poked and prodded and asked endless questions. This time, the questions were asked over the phone at exactly the agreed time, taking just 15 minutes. I had to go into hospital for the podding and poking, but barely had time to sit in the waiting room (which, incidentally, had a rather interesting choice of entertainment - no break from work topics here!).

So from where I'm sitting, it seems that Covid has actually improved my hospital experience. When I compliment the staff on this stellar service, they tell me they like it too. "It's one thing we're going to keep up," said the nurse who did the pre-op assessment by phone.

The breast care nurse tells me that they even managed to keep going with seeing cancer patients, all the way through the Covid crisis. Hats off.

In the meantime, I have to try and stay Covid-free until Friday.

They do a PCR test three days before surgery, after which I'm meant to isolate with my entire household. I don't want to run any risks of a positive test, so I've been working from home and semi-shielding along with my husband. The rest of the house emptied a week ago. Covid is rampant in London at the moment, with almost daily reports from son and daughters (and indeed my own office) of people testing positive. My son, who had been staying with us for a few weeks, returned to his own home. My daughters, who still live here, moved out until surgery day - taking Bear and Pig with them. 

We said our goodbyes, and now it's strangely quiet.

It could have been nicely restful if it wasn't for the 1st April looming like a bad joke. Let's just hope that my next blog post isn't called Cancelled in times of Covid.

149. The cancer blog

I am utterly flabbergasted (and rather flummoxed) by the response to my blog last week. I thought people might be interested and perhaps concerned to know why I won't be around for a while, but I really didn't expect this... Over 5000 people have read it in just a few days.

I have received HUNDREDS of personal messages.

Hundreds of friends, relatives and complete strangers who took the trouble to reach out to me on email, whatsapp and social media. Some of you even sent me flowers and cards (how on earth did you find greeting cards with owls on them, so quickly? Love them!).

I have read all your messages, but do forgive me for not responding to each one. This blog is my response, and I'm not promising to keep that up either. Here is one message that made me reach for my hanky:

Blog & write a diary if it helps you - if it doesn't, enjoy your garden and your music & leave us to look after ourselves for a bit.

Thank you Pink Champagne Friend (you know who you are), I shall take note - and if anyone is disappointed by my lack of blogging, they can blame you.

But for now, blogging does help. It's my way of distancing myself a bit from the difficult parts of having cancer, looking at it like a story-telling researcher (shout-out to Richard and colleagues: that's called ETHNOGRAPHY. I'm my very own ethnographer here!)

I do feel a bit of a fraud though. Yes, cancer is bad, but it's not that bad. I'm glad my cancer blog was appreciated by so many people, but I'm not sure it deserves the status as My Most Read Blog Post. I'd much rather that honour goes to my work blogs, so let me send you in the right direction... HERE's one I wrote a few days ago.

Which also shows you how I'm coping. Since my cancer diagnosis, I've spent every single day working. So many great projects that I'm sorry to have to step away from for a while, so I'm trying to cram in lots of things I was planning to do over the next few months. On Saturday I told myself that enough was enough, time to stop and rest, but it was no good. Stopping doesn't mean resting. Stopping means finding my breathing goes a bit too fast and my fingers start tingling. Best to keep staring at my computer screen so I don't see the elephant in the room, sitting right behind me.

Perhaps cancer is quite bad after all, and blogging is justified?

148. Another cancer, another owl

 

Well, hello again. If you have been here before, perhaps even right from the start in 2014 when I was new to blogging and new to cancer: Long time no see. Can’t say I’ve missed you.

If you’re new to this blog: A bitter welcome. I’m not sure how rocky this ride is going to be, so best be prepared to buckle up. Anyone wanting to get off now, please do and I don’t blame you.

I have breast cancer again.

There it is, my headline news. I’m not sure why it comes as such a shocking surprise. I should know better than anyone that cancer can appear in any woman’s breast, just like that: You’re fine one day, then you chance upon a little lump, you think “Hang on a minute, what’s this?” and get it checked out, and BANG. You’re still feeling fit and well but everything has changed, and before you know it you’re waved onto the cancer treatment rollercoaster that brings your fitness & wellness, indeed your entire life, to a screeching halt.

That happened before, so why shouldn’t it happen again? I’ve still got one breast after last decade’s debacle, so it’s a case of one down, one to go. But somehow, your subconscious decides that cancer is for Other People. Once that myth is busted by the unexpected arrival of your very own breast cancer, you adjust. OK then, cancer is clearly also for me, but cancer staying put and carrying on – well, that is definitely for Other People. Me? I shall live happily until I get knocked of my bike aged 102.

I had genuinely forgotten all about it. When people asked (in that meaningful concerned tone of voice) “How are you now?” it took me a while to figure out what prompted that question. Ah yes, of course, cancer, ages ago. No worries, I’m absolutely fine now, thank you. Lovely weather today, isn’t it. How’s your family/job/cat?

Now, we’re back to the precariousness of the How are you? question. (If you are thinking of asking me How are you? feel free but be warned that you may just get an honest answer. Perhaps read this first.)

Let’s get the facts out of the way. The short version:

•  Small lump (just under 2cm) in remaining breast turns out to be cancer
• Full mastectomy booked in for 1^st April (no joke)
• Further treatments may be needed, depending on what they find when they look at my sliced-up dodgy breast under the microscope
• But so far, it looks well-contained, so let’s hope that surgery will sort it out

Why write a cancer blog?

Because I can’t face telling all my friends and relations and colleagues the same sorry story over and over again. Because there are so many of you lovely people, interested in what’s happening for me, and I really want to tell each one of you but I can’t find the time or the headspace. Because I want people to know that they can talk about cancer, it’s not a taboo, it’s not a secret. A spade is a spade and a cancer is a cancer, and I want you to know that you can call it just that.

Writing about Breaking Bad News and Talking About Things is my job, and I will undoubtedly get back to you on this topic, but for now, please don’t take it personally if I don’t respond to your messages. I am comforted by the love and care of all of you, but I am also rather overwhelmed by my situation.

It’s easier, therefore, to tell my story just once. For those of you who want to know all the ins and outs of what’s been happening during the past few weeks, here it is. 

The long version:

After the full menu of treatments for a stage 2 breast cancer in 2014 (lumpectomy, hang-on-it’s-bigger-than-we-thought so let’s do a mastectomy, chemotherapy, radiotherapy) my annual check-ups had always been fine. Last year, my breast doctor discharged me. I still have three years of hormone treatment to go, but that tiny tablet is just part of my daily routine with little thought of why and wherefore. (It only had one job, which was to stop cancer in its tracks. It doesn't seem to have done that job particularly well.)

The lump

Just over three weeks ago, I discovered a small lump in the leftover breast. It felt exactly the same as before, a mirror image. I popped into the breast clinic (conveniently located opposite the bike shed at the university hospital where I work), begging to be seen, but because I’d been discharged I had to get a new GP referral. To my relief, the GP took my word for it on the phone and referred me at once. Then the hospital appointment office told me that it could be five or six weeks before they can see me – Covid backlog, you understand. Sorry, we’re only just booking patients who were referred three weeks ago.

I’m not one for panicking, but believe me, I stood in the corridor at work staring at my phone in a lightheaded sweat. Not knowing what’s going on with your body and your life is rather terrifying. So my relief was enormous when someone rang me back a few hours later with the news that they could, after all, fit me in on Saturday.

The breast clinic

The process in the one-stop breast clinic goes like this: A doctor prods and pokes, you have a mammogram, then an ultrasound, then (if needed) a biopsy, and finally another chat with the doctor, who will say: Let’s see what the results show, come back in two weeks.

To my pleasant surprise, I saw one of the Chiefs himself (“I agreed to work this Saturday, to help clear the backlog” – NHS staff are truly amazing). This breast surgeon was able to recognise my experience as a cancer patient and as a colleague, and willing to speak his mind. I couldn’t cope with the thought of waiting two weeks to get my cancer diagnosis confirmed, so I told the Chief that it looks like cancer, doesn’t it? If so, it would really help me to know when you might do the surgery? I’ve got work to sort out, you see. A new research project starting. The more time I have to get things sorted, the better.

(When it gets to discussing my work with the cancer doctors and nurses, we’re into sitcom territory. Eight years ago… Doctor: You’ve got cancer. Remind me what work you do? Me: I’ve just written a book on how to break bad news.

This time… Doctor: What do you do? You’re a professor here? You should have said at once! What area of research? Me: How to plan for the end of your life.)

The upshot was that the Chief booked me in for a bone scan and CT scan straight away. (“We don’t usually do that, because women get so alarmed at being sent for scans before we’ve told them the results of their biopsy, but in your case, let’s just get on with it.”)

The new owl

So there it was. I wasn’t yet given my formal diagnosis, but it was pretty obvious that I had cancer again. Who to tell, and when? The children first, obviously. And immediately. I don’t ever want them to worry that there are things they don’t know about, or things they can’t talk about. That is only possible if they are confident we tell them everything, openly and honestly. Plus, how can people support you if they don't know you need support?

No longer children now – my daughters are 18 and 22, my son is 24. They were shocked but also brilliantly practical. They remember the rocky road from last time, so now we just need to get our heads around another bumpy ride. My daughters knew exactly what was needed.

Mum, you need a new animal!

This blog is named after Owl, who accompanied me throughout my previous cancer treatments. It’s a long story – if you haven’t met Owl, you can read all about him here.

Just looking at Owl, who has been sitting quietly on the bedroom bookcase, made me feel nauseous. I couldn’t bear the thought of getting him out of retirement, as there are too many associations of hard times. (The VIP lounge springs to mind.) And really, I no longer have the excuse of needing to bring a stuffed toy to medical appointments for the sake of two young daughters who made sense of my cancer story through the story of Owl. Surely, I no longer needed him?

But my daughters were wiser than me. Of course Owl wasn’t for them. Mum, YOU need... Yes indeed: new cancer, new animal. The shock of hearing about my cancer turned into excitement. What animal? They pondered getting me an otter, sloth, beaver, bear, but in the end we decided it had to be another owl. We named him Otus (that’s Latin for Owl, apparently).

Otus was pressed into service the following day, when I was put through various scanners. I’m not sure how often the hospital staff get to put owls through their machines and take photos of them, but if they were taken aback, they didn’t show it. I tried to mumble something about For the girls, you see (leaving aside that these girls are grown-ups), but perhaps I should just stop pretending that Otus is there for them. The staff understood this too. They suggested that I could leave Otus lying on my stomach as the bone scanner closed in on us, and that was a surprising comfort. Lying there for 45 minutes with the large machine right on top of me, I was glad of the company.

Tears in the office

Waiting for Results Day is horrible. That’s all I can say. I went into work overdrive, trying to get ahead and sorted as much as possible, because whenever I stopped, I had butterflies in my stomach as if I was waiting for a scary exam. I decided to tell the colleagues involved in my projects, because I needed their help to plan ahead. That was hard but also life-affirming. Such lovely colleagues… Tears were shed in the office. I wasn’t planning on tears (because I’m in charge! I’m in control! And tears are dangerous, because once you start, will they ever stop?). But my colleague Richard (who has learning disabilities) was the first to cut through that: Can I give you a hug, Irene? (Oh yes please! And pass round the hankies!).

Others followed suit. I’d tell them my cancer news, we’d talk through it all, we’d reassure each other that the show will go on – this is how we will manage, this is who will support you. Yes, it will all be fine. And then we’d stop, and look at each other, and weep. It’s rubbish, isn’t it.

They were right, of course. We needed to think about the implications and the practicalities of the project manager going on sick leave, but we also needed to acknowledge that we care for each other as human beings. We needed to acknowledge together that Bad News is called Bad News because it is, well, Bad. No use trying to dress it up in a fancy outfit.

Outside work, I kept as quiet as possible, because the tears in the office were enough to cope with. Plus, every time you tell someone I have breast cancer again, it forces you to look at it and believe it, making it more real. It’s exhausting.

During those same weeks, there was only one other bit of news. There are no words to describe the horror and terror of Russia’s war with Ukraine. I am so very aware that I am adding to sum total of misery in the world, but also, that my bit of misery pales into insignificance when I look at what millions of people are suffering right now.

Thank goodness for the NHS, for family and friends and colleagues.

Results Day

A few days ago my husband and I walked into the breast clinic full of trepidation. Now here’s the strange thing. When the Chief greeted us with “Good news! The scans were clear, the cancer hasn’t spread anywhere,” I really did experience that as good news. I still do. Husband noted afterwards that being told I had cancer didn’t sound like particularly good news to him, but I already accepted that bit of the message. Bad news is not just broken by the Chief's official verdict, but also by what I can feel in my breast, see on the ultrasound scanner, deduct from the words of Charmaine, my previous breast care nurse who I'd bumped into a few weeks ago ("You're right Irene, if it looks like a duck and it quacks like a duck, it's going to be a duck"). I had deducted it from the Chief's response at his initial prod and poke. Clearly, he wouldn’t have put me through all those scanners quite yet if he thought it might just be an innocent lump.

So my relief was enormous when nothing dubious showed up in my bones or other organs. Now, we’re back in familiar territory. Grade 1 cancer? Walk in the park. The Chief reckons that a lumpectomy will suffice, with a bit of radiotherapy thrown after it for good measure; but I had already told him not to bother with taking just the lump out. Get rid of the whole breast please. If I’ve managed to grow breast cancer twice, I don't want to run any risk of Third Time Unlucky.

The Chief understood. He started leafing through his diary to see how soon he could fit me in for a mastectomy. We’d counted on 8^th April, but alas, he’d just booked in another woman who had Covid so needed her surgery postponed. Shouldn’t really wait another week. How about the week before? Hm, also looking quite full but you're urgent - we'll squeeze you in. So, 1^st April it is.

I could only feel relief. By now, my worries about work (starting the How-To-Plan-For-The-End-Of-Life study on 1^st April! Meetings planned! New staff starting on that very day!) had made way for worries about delays. Is it my imagination, or is the breast lump just a tiny bit bigger every day? I can feel it – in a certain bathroom light, I can even see it. So, let’s take a deep breath, and get on with it.

I’m trying to look at the positives.

There’s all of you, sticking with my story by reading this far, thinking of me, stepping in to help me manage my life and especially my work.

There's best-husband-in-the-world, and my grown-up children. Not having to worry about looking after them is just amazing. My daughter cooked me dinner last night.

There's the distraction of work, whilst knowing I have some brilliant colleagues who will manage, despite (or perhaps even thanks to) the tears in the office. I’m still working 7 long days a week… I just can’t stop, because if I stop, the butterflies are back. But I know that in two weeks’ time, I will truly be able to leave everything and sign out. So that’s a positive of sorts. I might even be looking forward to it. Sea, sand and surgery: a break from daily life, let's call it a holiday.

Then there is the prospect of evening things out in the chest department. That’s also a positive of sorts, is it not? Convenient flat chest, no need for a bra.

I’m clutching at straws here, as you can see. Because really, having cancer again is just crap, excuse my language.

I’ll try and keep you posted.

 

147. 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!

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.

     Lumpectomy.

     Mastectomy.

     Lymph nodes removed.

     Chemotherapy.

     Radiotherapy.

     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.

When Owl Had Cancer.

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.

Irene

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. 

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.

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.

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.