Isn’t it all a distraction until we die?

I have been distracting myself quite nicely this week by filling my time with productive ‘busy-ness’. I often do this when I don’t want to think about big things. It drives my husband crazy.  Watching telly and reading books are tricky as my mind wanders easily and there also seems to be someone dying of cancer or being diagnosed with it on every channel or page.  I guess that’s representative as 1 in 2 of us will get cancer and 1 in 7 women will be diagnosed with breast cancer.  It’s still annoying when you are trying to get away from cancer for a bit.

I can’t wait for next month and breast cancer awareness! It’s always annoyed me even before I had breast cancer – all those pink ribbons and decorated bras. Granted the awareness job cannot be denied – 5,000 people will be diagnosed next month. However, that pale pink ribbon seems a bit pathetic when it’s the second most common cause of cancer death in UK women.  That accounts for about 11,500 deaths a year.  So roughly 31 women died of breast cancer yesterday, today, tomorrow and the next day. 

When you spend time with women or being a woman on chemo for life, fighting the spread of breast cancer, dealing with lymphoedema, mastectomy nerve damage, one or no boobs, skin mets bursting out of their chest, a dainty pink ribbon seems a bit trite. It has become a ‘thing’ in its own right and I wonder whether people see beyond knowing what it stands for?

God, there’s two weeks to go and it’s already winding me up. I’ve also got to get through the Macmillan Coffee mornings. Last year I was invited to several and most people didn’t know I had cancer. At least this year I’m out and proud, maybe I’ll go in sequins and represent cancer pride? I’m clearly not proud to have cancer, but I am proud that I am still here smiling (mostly). I am not going to hide my cancer (diagnosis) in any closet. I am also proud of my friends and family for all their support and ability to hold themselves together (around me at least). 

So apart from turning out cupboards and tidying sheds (can’t blame the steroids anymore) I’ve also been doing some ‘nice’ things. 

I’ve always had a bit of a creative side. I like painting, design and making things. I’ve resisted getting back into painting for fear of what might end up on the canvas.  I thought the anger (which is only recently making an appearance) might spill out through the end of my paint brushes creating a disturbing legacy of my inner mind. Stuff obviously needed to come out though, which is why I think the poems turned up in my life at the beginning of this year. 

Last month I signed up for a last minute art course at our local art place.  I saw it on social media late one evening and thought ‘I fancy doing that’.  Often this would be accompanied by ‘one day’, but I’m more of a ‘now’ person than ever before (for obvious reasons).  It’s very liberating.

If there is something you love doing or think you’d like to have a go at, do it. Don’t wait. 

The course was in geli plate printing. You use a silicone plate a bit like a giant slice of posh grown up jelly dessert or quince jelly on the side of a cheese board. You use this instead of a press or a screen to make a monotype print. I have never done this before, but I did textile design and screen printing at school and I absolutely loved it. I still have my work in the loft somewhere (that’s next for the turn out). I assumed the course was for a couple of hours. It was actually for a day. Husband was very accommodating, so all worked out brilliantly.

The course was absorbing, fun and very therapeutic as no one on the course knew me or that I had advanced cancer. The technique was also very conducive to my state of mind as it allowed me to be totally captive to something else with little room for the busy mind to race.  The teacher taught us a 3/3/3 principle which was the number of seconds you have to put the paint on, arrange your relief material (leaves in this case) and print. Then peel off and print again. Then more paint and go again. It was fast. Fast process, fast results. The total opposite of treating cancer. No time to think. Perfect for my anxious cancer obsessed mind. 

So since the day I spent covered in paint and immersed in creating prints at high speed, I have bought my own press and had a go at home.  Aside from the resulting prints (which are of mixed quality and success) the actual process was so engaging and cathartic that I’ll be trying it again. 

It got me thinking much more deeply about art and creativity. 

We tend to judge art on the end result and not the enjoyment of the process. The thing, not the experience. I genuinely like experiencing and trying new things. I get a thrill from learning to do something different, from the learning itself. It’s a cliche, but I guess we could all learn to enjoy the ride and not focus solely on the destination. After all, we are all going to end up in the same place.  The ride differentiates us. 

Statistic from Breast Cancer Care and Cancer Research websites.

Why ‘The Cancer Gap’?

One day you are on your sister’s hen do and the next day you are told you have advanced, aggressive breast cancer. It was surreal. Even now it is like it happened to someone else, not me.

When I was diagnosed, one of the many ways I dealt with it was to ‘reframe it’. This is something I often do at work and in my personal life. It is all about perspective. I reframed my diagnosis as ‘My Cancer Gap Year’. Who wouldn’t take a year out to fight for their life?

I never had a gap year after A Levels or University, I only had 5-6 months off work when I had both my children, so this was my time. Not exactly my plan, but it was a way to manage it mentally.

I could afford to step off the accelerator of my working life and take things a bit easier. Except as a cancer gap year my way of being was to get through it as quickly as possible. To get to the finish line with the cancer eradicated and my body reshaped and looking as close to ‘normal’ as it did at the beginning.

I told myself that this year will become something that happened, something that shaped me, maybe even changed me a bit, but it would be in the past, behind me. Done.

The momentum and positivity was helpful. It was about 6 months in when the reality of a longer stint became obvious. I certainly wasn’t going to get everything including reconstruction done in a year.

Time to recalibrate. Cancer gone in a year, body a work in progress. OK let’s do this.

At 10 months the reality of a secondary cancer diagnosis meant I no longer had a curable cancer and even the glimmer of hope of a normal life expectancy (whatever that is). The cancer gap year increased ad infinitum. Bang goes the title of my blog I haven’t even written.

It was about at this time that I realised that I had to accommodate cancer (and its on-going treatment) into my life. I needed to take time to process some of the intense and difficult feelings in order to build a life around breast cancer now, not after it. The writing has and is helping with this.

The idea of ‘The Cancer Gap’ then evolved. For me this is the gaping hole it has punched right through my life, as well as the one in my chest and underarm. Turns out 96mm of cancer tumour and 23 lymph nodes, leave an emotional gap as well as a physical one. You can’t just fill this. Like grief, you have to build a life back around the hole cancer leaves.

There are also big gaps in cancer care, in insurance, in the workplace, in society. One in two people will get cancer and a lot of us won’t die from it because, like HIV the treatment is changing all the time. Cancer will be managed and controlled. However, we have a long way to go before our employers, insurers and society accommodates cancer. We can barely talk about it never mind accommodate it.

If you’ve had cancer or cancer treatment in the last year, you can’t even get a massage in most places! And yet all the hospitals and hospices know that massage, reflexology etc make a difference to well being and sometimes outcomes.

There is an enormous gap in how we deal with cancer. It’s OK to fund raise for cancer, but aside from that no one likes to talk about it much. Certainly not the side effects or the emotional side.

People think it won’t happen to them. But it might. It will definitely happen to many people they know.

I don’t tend to think or say ‘Why me?’, but I think ‘Why not me?’. And frankly ‘why not you?’.

It is not all doom and gloom though. I have had a pretty awesome 14 months in so many ways. I’ve got off my arse and done things I’ve been meaning to do for ages. I don’t mean big ‘bucket list’ things like flying over the Grand Canyon (not that I particularly want to do that), but small things like picking up the phone to old friends, like seeing more theatre, having real conversations with family and friends. Being present and living all the cliches like seizing every day and trying things you’ve never done (like this very personal blog) and not being wedded to them being perfect or a success.

So, ‘The Cancer Gap’ is also immensely positive. It got me off a bit of a treadmill. It is creating space and clarity around what and who to focus on. It is evolving all the time. I hope you enjoy this blog and connect with people in your life in a different way as a result of dipping into it.

Seaside Ramble (Poem 2)

Seaside Ramble

Back here again brings me sadness,
Family memories flooding in,
Wondering whether I’ll be back as kin,
Wind is whistling, sea is surging, danger at the cliffs

I love the sea; it makes me feel small and insignificant,
Being at the centre of our family’s storm gives attention I do not crave,
These poems are a way to rant
And maybe understand me from the grave…

9th Mar 2019
Burton Bradstock Beach

Poetry

I would not describe myself as a poet. In fact until early March 2019 I had not written a poem since I was required to do so at school or university some 25 years before. 

And yet here we are with a small, but growing collection of poems

I wrote the first poem (Self Discovery) one Sunday whilst laying in bed, pretty low and exhausted following the delayed effects of radiotherapy. Or possibly the cumulative effects of the previous nine months: an advanced cancer diagnosis, 18 weeks chemo, several emergency hospital admissions, 3 operations, 9 weeks of carrying a surgical drain around, 3 weeks of intensive radiotherapy everyday plus a bone infusion. No clear margins and no idea how much cancer was left or where it was. 

I guess I was allowed to be tired and a bit fed up. 

Up to this point I had focused almost entirely on the physical and practical aspects of a diagnosis, i.e. running around the country going to various appointments to discuss, receive or assess the effects and success treatment. The effects were pretty significant and the success was hard to come by or pin down. In fact almost every appointment brought more bad news, more treatments and more procedures or ops. More uncertainty that is for sure.

It was on this Sunday morning that I found myself alone in bed; alone in the house and alone in my thoughts and fears. I felt that I could not talk to anybody about how I was really feeling. Up until this point I could barely allow my subconscious to think or talk about how I was feeling, even to myself. I had not really given myself much time for internal dialogue – it was just too much, too scary and frankly a distraction from the physical, practical, all consuming job of getting on top of this cancer.

To this day I don’t know why, but I felt compelled to write. 

I picked up a pen from my bedside drawer and a scrappy bit of paper (it was actually from a to do list pad – which is definitely my normal modus operandi) and I wrote a poem. It came in 60-90 mins from somewhere deep inside me. From the place that knew this cancer was not gone and this was not the end of my journey. I knew I wasn’t in remission. 

It was 3 days later on the Wednesday that I was diagnosed with secondary breast cancer. The cancer was still on the move.

Since then I have gone back and forth through various experiences on this journey and taken the time to examine how I felt and what I thought. 

I have found writing and reading the poetry an essential part of acknowledging the feelings and experiences I have lived through. A way to accept and discharge the feelings.

I hope they give you an idea of what it is like to have cancer and to endure its often barbaric treatment. I won’t pretend that they are easy reading but it is important that we share how you deal with cancer so we acknowledge its challenges for the many people who are directly or indirectly effected by this insidious disease. 

This is very much my journey and my experience. We are all unique. Each cancer is unique and how we respond to treatment is very personal. 

If someone you know or love is going through this ask them about their experience. And listen to what they say and how they say it. It will make a difference.

Poems to Date