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.


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