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.
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.
 |
| Cycling and singing in France last weekend |
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
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