Looking for the self help book

The other day my breast cancer buddy said to me “It’s really shit having cancer”.

It is really shit having cancer.

It is really shit being told you  have cancer. It is even more shit having to tell people you have cancer. That’s knackering.

But the shittest thing was being told my cancer had come back. I was scared; horrified; angry with myself (and that’s interesting, isn’t it, and maybe another post another time). And when they told me it had spread to my lungs, I knew I was going to die.

So I decided that I would find a book that would tell me how to die. A step by step guide. I may even have imagined a flow chart.

I have bought books that give me advice on every conceivable topic – from having a baby to tidying my bedroom. Finding a book for this proved more difficult than I expected. I wanted something:

  • Secular. No religious content. (And really – if I really believed in life after death, why would I be afraid of dying? Religious books on dying feel like cheating…)
  • Practical. I don’t know quite what I anticipated. Something that would give me guidelines on how much time I should devote to worrying about death? A will template? Suggestions for controlling my children’s reading habits from beyond the grave? I think I just wanted something that would help me feel in control.
  • Positive. Obviously.
  • Well written. Because I might be in the process of shuffling off this mortal coil, but I don’t want to be reading something that makes me cringe.

The really interesting thing is that I’ve worked in mental illness for over 20 years now, and yet somehow I had not grasped the idea that it is normal to be afraid of death. Maybe I’ve worked with too many people with suicidal ideas – maybe I’ve got used to the idea that it’s living that’s the scary bit.

I’m not sure I even knew that I was afraid of dying. I simply didn’t think about it, except as something a long way off, that happened to other people. When people congratulated me first time round on “conquering” cancer, it was as if I’d become immortal. We could all stop thinking about death. Phew.

I still find it hard to think about dying – it’s impossible to imagine not being alive: not breathing, not seeing, not hearing. Not being.

So now I’m beginning to think that my journaling and blogging is actually me writing the book for myself. The magic self help book that’s going to sort it all out for me. Maybe I’m stumbling and fumbling towards some sort of understanding of what works for me, what helps me deal with the different emotions that roll up like waves in the ocean, and roll back down again – often seemingly at random. Maybe this is it.

 

Post surgery swimwear

This is not one of those blogs that starts off all chatty and this is me and this is my life, and then hits you with what is basically an advert for stuff. But I just wanted to say that I just bought a post-surgery swimming costume for £35 from Marks and Spencer and it is great – nice high neck line, good support for the swimming boob, stood up to swimming on a surf beach with no cleavage issues. I had been looking on specialist sites where you were looking at £100 (and up) for a swimming costume. No way. Admittedly, M&S have a range of 3 costumes, so there’s not much choice in terms of design (black, floral, multi-coloured stripes), but the quality is great.

My breasts

I have 4 breasts. I’ve lost 3 along the way, so that makes 7 in total – a strikingly magical number.

My right breast is an amazing, hand-crafted piece of art, sculpted out of my own flesh. It is admired by medical professionals on a regular basis.

My left chest wall is flat and scarred. My left breast tried to kill me, too, and had to be removed. The implant I had put in failed. I can’t have another go – the skin is thinned and scarred by radiotherapy. It’s not viable.

Obviously, if I’d known this was how things were going to end up, I wouldn’t have had the reconstruction. I’d be flat all over. I’d have a choice of breasts – no breasts at all for sport; small, chic ones for sophisticated occasions; party ones! Maybe.

Instead, I have a small collection of left breast prostheses. Be aware that I am a woman who can’t control her pens, her sunglasses, her mobile or  her reading glasses. That means my kids are used to hearing me shout “I’ve lost my boob, I’ll be down in a minute”. That counts as normal in our house now.

Firstly, I have a firm, silicone breast. My every day breast. It’s reasonably realistic in texture, but it’s always cold, and it’s the same plastic pink colour as my daughter’s long neglected Barbie.

Next I have a clear, light-weight, chlorine resistant swimming breast. Sometimes I wear it all the time – if we’re going away on hand luggage only. It looks like an affectionate jellyfish, snuggling up to me. It feels weird.

My last breast is the first one they gave me post-op. It’s a little muppet softy, gentle on new, tender wounds. It feels like a firmly stuffed rag doll – without the arms and legs. And head. I wear it for running, because there’s no friction.

Now I don’t have any breasts of my own, I have more than any woman could reasonably need.

 

Keeping it open

For me, the worst thing about this whole cancer secondaries has been the feeling that doors are closing for me; the feeling that life is shutting down.

I have always loved new beginnings, new adventures. I’ve always loved having a sense of opportunity – of lots of opportunities. I’ve always assumed that there will be something new – at the end of this phase of life I’ll try something else. Even with jobs I’ve loved, my happiest day has been the day I put in my letter of resignation.

This cancer thing, though, is limiting. It puts a question mark over everything. Should we book this holiday? What if…? Could I move jobs? What about moving house? Could I even get a mortgage? How long should I stay in this job for? This job that’s getting harder and more stressful all the time?

In the beginning, I turned from being someone who said “Yes” to being someone who said “No”. I stepped back from taking on more responsibilities at work. I accepted that this was where I was. I even censored my own bucket list, for goodness’ sake – scared of wanting things I couldn’t have.

But the first thing my husband did – after he’d scooped himself up off the floor, and then helped me scoop myself up off the floor – was book a trip to Finland, to see the northern lights. And he has kept on believing in me as someone who can say “Yes”.

I still feel that my path is narrower than it was before my diagnosis. I live my life in the chunks between oncology reviews. I think about the future, but with a little set of brackets in my head (“what if…?”). But I try to say “Yes”.

And if there is a trick to all this, that’s it. Saying “Yes”. “Yes” is hope, and fun, and joy, and love, and all the things that make up this glorious, wonderful, amazing life. It’s also pain, and fear, and worry, but they are part of life, too. “No” takes you somewhere dark and cold and small. Even when there aren’t many things to say “Yes” to, I think it’s still better to reach out to them than to back away.

Gratitude

It is easy to forget to be grateful. I’m not even sure what we are grateful to – not to a God, because we are secular humanists, aren’t we? Maybe to other people. Maybe to the world. Maybe to blind chance. Maybe even to ourselves.

These things don’t always notice your gratitude. But you will.

It is easy to skim over the small details that make up a life, and concentrate on the big events – the exams passed, the holidays, the parties, the promotions. And they are fantastic – though the fizz wears off  pretty quickly – but as the Mad Hatter points out, it’s much better to celebrate un-birthdays than birthdays. There are 364 of them a year.

I have kept gratitude journal on and off for a while. It’s something I like to do. I enjoy recalling and recording the beautiful, transient moments that make life a little better. It’s funny what comes up: the time my dear friend’s teenage daughter gave my little girl a manicure (and that’s a long time ago); the perfect combination of bacon and avocado; the work colleague who brought me a cup of tea because I looked tired.

I wonder what it would be like if you did the opposite? If you kept a journal of things that irritated and annoyed you? Things that got you down?

I think I might have effectively done that for a while as a teenager. I’ve often tried to keep diaries and not succeeded very well, but I’m pretty sure that if I could track them down I’d find they were pretty moany. I’m also pretty sure that if I read through them I’d find I’ve forgotten most of those terrible things that made my life so desperately unhappy. Or they’d look so laughably trivial I really wouldn’t understand why they made such an impact.

My life is a mosaic of good and bad moments – and quite a few that pass by unnoticed. Drawing my attention to the good moments reminds me why I’m alive and why I want to be alive.

So happy unbirthday to you.

The start of the cancer story.

When I first had a diagnosis of cancer I was – of course – terrified. I was scared of dying, of leaving my beautiful children behind, of leaving my husband, my parents, all of that. I wasn’t even 45 yet. I had no family history of breast cancer. I hadn’t lived a crazily ascetic marathon-running lifestyle, but I had a healthier lifestyle than most of my friends – and they hadn’t got cancer. The bastards.

And then, I picked myself up, did my time in the chemo unit (chemo: less fun than it sounds), had my mastectomy, relied on friends and family to support me and my little nuclear family through it all, got myself blasted on the radiotherapy unit, kept on working as much as I could, kept my head down and kept going.

It all stopped. I was fine.

I had a reconstruction – a big lump of ugly abdominal fat sculpted into an amazing new breast; 2 days of sitting in a side room heated to sauna level, another fine set of scars that to me were a line drawn under the whole horrible business.

But of course, I was wrong. Completely, utterly, stupidly wrong.

Living with dying #1

Ha ha ha. You’re dying. I’m dying.

That’s the nature of life. It is transient – a bird flying from window to window of a lighted hall. We all know that. But it’s really hard to hold on to that idea – to really believe it.

I was discussing immortality with my 12 year old the other day. I said I quite fancied the idea of living for ever. He shook his head (he’s so wise!) and said “Think about it, Mum. The whole universe is a cold, dead, empty space, and you’re still hanging there, all alone.”

I sometimes wonder what he reads.

Nevertheless, he’s right. And even if they believe in the immortality of the soul, most people are kind of upset when other people they love die, and most people kind of accept that if there is any kind of immortality it is in some other state, not this actual physical body, on this actual, physical planet drifting onwards through infinity.

I am probably marginally better at believing I am going to die than most people are, just because I’ve been given a bit of a hint as to how I’m going to go. Those little nodules lurking in my lungs are going to blossom and grow and eventually starve me to death. Something like that.

For the last few  years I have, from time to time, thought about how to approach the process of dying. I have wondered how much time I should invest into worrying about it. I have wondered whether I really need to floss EVERY night. I have worried about how things will be for my kids, what I’ll be missing from. I haven’t worried too much about pain, but I have worried about nausea. Not all the time, obviously. I buy new clothes. I go on holiday. I go to work. I empty the dishwasher.

Most of the time all those thoughts and worries sit in a little box on a shelf at the back of my head. But I thought maybe it would be worth taking the box down from time to time and unpacking it a little. Examining the contents. Sharing them with you. Letting you know about the things I do to keep that box safe.