One Year On…..

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I can’t really believe it’s been more than a year since my last blog post. A year since I’ve written a creative sentence. And suddenly here I am, hands on the keyboard, words appearing on the screen.

I won’t go into the ups and downs of the journey so far, except to say the downs have been breathtaking and the ups hard won. Some days I can hardly believe I’ve made it this far. And I feel better than I felt when I was first diagnosed in May 2015. I have been very fortunate. I have a gene mutation called ROS1, which is found in only 1 in 100 non-small cell lung cancer patients. This means I have been treated with some new immunotherapy  drugs which have not been suitable for other patients.

I have been on the latest one for just a few weeks, so until the scans and MRI in a couple of months I won’t know how effective it has been. The word used by patients for the feelings that prevail at this time is ‘scanxiety’. As we are usually waiting for a scan date, or the subsequent results, it tends to be a more-or-less permanent state of mind and nerves.

But the bottom line is I have seen another summer, been well enough to spend long weekends in Hereford and Edinburgh and had more days out having adventures with my wonderful husband than I can count. I have bought spring bulbs and planned what to do in the garden next year, and we are tentatively planning a river cruise (with a late booking).

Now, as I look back, the weeks spent in bed recovering from chemo, the days being wheeled round in a wheelchair because I was too weak to stand, and the days when I slept and slept and slept, seem as insubstantial as frost when the sun comes up. The bright memories are of the lorikeets perching on my fingers at Edinburgh Zoo, and the huge alium blossoms that seemed to be everywhere in Hereford. There were picnics by our favourite lake with the younger grandchildren, with the sharp smell of freshly cut grass and the slap of oars on water. A long, lazy lunch in the sun with my second-eldest granddaughter,  the week before she went to university,  dinner under the stars with my eldest granddaughter, and days strolling through markets with my husband.

Mostly just ordinary things, but somehow they have all seemed touched by magic. I am realising that it is through the ordinary things that our lives unfold and are enriched, in the everyday that we find love and acceptance -in the touch of a hand or the laughter of friends.

And if the colours have seemed brighter this year, perhaps it is because I have just learned to see them with clearer eyes.

 

 

 

 

 

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Warrior women

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Gynosphinx

Gynosphinx

‘Warrior women’ is a term that’s been bandied about a fair bit, often connected with feminism or reclaiming that which is lost. Well, lately I’ve met the real deal. I’ve met a lot of new people online. Mostly women, all with similar advanced lung cancers to mine. And what a feisty lot they are. I’ve never met people so strong, so determined, so bloody-minded and intelligent. They have been my salvation in these last few dark weeks, waiting for results and a treatment plan.

They have taught me to look at life in a different way. They have warned me never to look at cancer statistics on Google – ever. They are brave and wise and I am totally in awe of them. None of us have the time, or the inclination to deal with bullshit – from anyone. We say it as it is, we are kind to each other, we offer information and virtual hugs. We know what this is all about. It is a very exclusive club that none of us wanted to belong to.

So within a week I will have started chemo and I can begin to beat the cancer cells into submission, wherever they rear their ugly heads. They will never be totally gone, of course, but that’s not the name of this particular game. Science is amazing – within a couple of days now, the genome sequencing will be finished on my cancer, the mutations identified, a plan of attack worked out. The diagnostic process I have undergone, with scans and biopsies etc. has been phenomenal. The NHS comes in for a lot of stick, but I can put my hand on my heart and say I have never felt so much confidence in any organisation as I do in all the doctors, nurses and  technicians responsible for my wrap-around care, at York Teaching Hospital and St James’s in Leeds.

Two months ago, I didn’t think I’d ever feel positive about life again. Today is different.

One month on, and waiting…

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One month on, and still in the diagnostic process. Each test adds to what I know of the cancer, but it also adds to the bad news, the compromised lymph glands, the potential spread.  Just the biopsies left now, for a positive identification of the cancer cells, then hopefully a treatment plan.

It has been the worst month I can remember, with stress levels off the scale and mood swings like I’ve never known before. I haven’t felt like writing a blog, or doing anything but essential stuff. I’ve sorted out my wardrobe, put together a list of letters and documents I need to write, and I’ve started winding up my small business. Thankfully, I’ve no writing commissions on the books right now, because I’ve not been able to string half a dozen words together lately.

All of this is negative. It has everything to do with endings, and nothing to do with continuation. Every time I open my diary, put in an appointment, it feels like an act of faith. The further ahead the date, the more faith it takes to write it down.

There have been islands of  pleasure, at weekends, going out for days with my husband. We have found new places to visit, we have laughed, we have sat on benches in the sunshine watching the world go by. The silences, the long pauses between words, let in the sadness and it leaks into the brightness. We do our best to ignore it, but tears are never far away.

I’d love to be one of these brave people who can deal with the prospect of death with stoicism. Or perhaps no-one does. Perhaps the dark nights of the soul drag at us all in the end, and the rest is just bravado, putting on a good act to save our family and friends the distress  of seeing how terrified we really are.

People who know these things tell me that I will feel better when all the test results are in and treatment starts. There will be a focus then, a clearer road to travel.  I will fight like I’ve never fought before, and it will be quite a battle, I think. There are still things I want to do, things I’ve put off for other days, that suddenly seem important. The ‘other days’ aren’t there any more. The time is now.

       The woods are lovely, dark and deep,   
       But I have promises to keep,   
       And miles to go before I sleep,   
      And miles to go before I sleep.
                                               Robert Frost

 

The other scary stuff

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Suddenly, ‘Writing and Other Stuff’ has become about the ‘other stuff’.  Today, in a telephone consultation with my doctor, I came face to face with my own mortality. Yesterday’s X-Ray is today’s probability of lung cancer. More tests – a CT scan etc., etc., … but 50 years a smoker and the results are not hard to visualise.

It’s a strange place to be – probability without certainty (but I’m pretty sure – it’s my body after all). There is a newness about it, an altered reality. My new reality is less than two hours old. All I have is words. All I have in the insanity of my fractured thoughts is this blog, where I put one word after the other, and it makes me feel better. Somehow, I doubt this will be the outcome of today’s blog. But I write because it is a normality in a new world. A world that has changed with a conversation, an image on an X-Ray. I am no different to the ‘me’ I was this morning. I don’t feel sick, or changed, or different.  But everything is changed now. Because I know.

I’m sitting here with a bottle of Sauvignon Blanc and a huge bar of chocolate, because right now I don’t give a shit what poor diet does to my body.  Tomorrow I will possibly think differently.  Possibly not. There is a long road ahead, and I have no idea what the choices will be along that road.

I do know that a genie has been let out of a bottle today. Every time I open my mouth, a new honesty spills out. I haven’t got time for obfuscation. If I piss people off, that’s just tough. Those who love me will understand.

Tomorrow, I will greet the day as if it is my last. I will notice things I take for granted. And somehow, I will manage the fear, the anger, the regret for things I haven’t yet done.  I will prevail. Somehow.

 

 

Blessing the Boats

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Whitby harbour

Whitby harbour

A smoke of gulls
trails the red trawler,
spinning, dipping,
wings tipping
in a grey sky.

Landward of the sea wall,
seeming tall
above the harbour,
the bishop stands,
cope and mitre
brighter than the day.
Arms raised,
praise the Lord,
bless the boats
and all who fish a living
from the sea.

The red trawler dips
and pitches
towards the harbour.
Tide out, keels bare
to the salt air,
boats built for fine days
loll against silt cushions.

Voices join,
thoughts turn from ice cream
to those in peril
on the sea.

The trawler coasts home
with a catch of crabs,
nudging the quay,
home from the sea.
Gulls cries
scratch the harmony of hymns.
Sinews stretch,
boxes swing,
the quayside runs
with captured sea.

Learning curve

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Brandenburg Gate, Berlin

Brandenburg Gate, Berlin

For someone who loves words, I’m finding it incredibly difficult to learn another language. I always try to learn at least enough to greet people, say please and thank you, and order food and drink, in the native language of any country I visit. That’s just simple courtesy.

I learned French at school and, although I hated the subject, it’s the only foreign language that’s really stuck. I even remember gender and grammar rules. The rest came back very quickly on a three-week meander through France.

Italian I learned at evening classes, and got plenty of practice in Tuscany, staying in rural areas where English wasn’t widely spoken.

The problem is, as I cross the channel when the holidays are over, foreign languages, at least at the level I speak them, are redundant. It’s not as if I can pop into the butcher’s shop and ask for a pound of sausages in French. Any skill unused becomes rusty. Vocabulary is forgotten, even the sounds and cadences of sentences, so familiar just a short time ago, become alien and awkward, the shapes more difficult for the mouth to form.

Now I’m struggling with German. With only a couple of weeks’ notice, I can’t learn very much, but I did think I could pick up a few words of greeting and some useful phrases. I’m not doing very well. I read the words, I listen to the online pronunciation, I repeat the phrases. What I do not do is remember much of it a couple of hours later. I have got to the point where I can greet my husband in German as he comes home from work, but time is short, and I need more confidence before I air my few words publicly in the country of their origin.

I refuse to contemplate the thought that this is yet another symptom of getting older. I retain other information, why should language be any different? Perhaps there are just too many words already floating round in my head? All the story ideas, the scenes that characters play out in my mind, the planning and plotting. Maybe they are squeezing out the small voice that says Guten tag, pushing the words into a corner where I won’t find them. That’s the excuse I’m sticking to, anyway.

Back to the lessons….

Just a few simple words

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722674_40131797Well, the words did finally emerge yesterday, after my bleak, brief post, and I ended up with a short story I’m really pleased with. Edited the copy a couple of times this morning and sent it off via email.

I know that email submissions have literally opened up the world to writers. I don’t have to think twice now before sending work off to States or Australia. At one time, that was a big deal, with IRCs and international postage rates complicating matters, never mind the problems of payment if the work sold. Now with Paypal, even that isn’t an issue. I sell non-fiction through a Canadian company that pays me in US dollars. Every month Paypal calculates the exchange rate for me and I simply transfer the balance into my UK bank account.

So I really can’t complain about the technology that allows me such global freedom.

But….the real issue I have is the lack of acknowledgement for work sent by email, especially when months can elapse between submission and decision. When I sent work out by post, as a matter of course I included a self-addressed and stamped postcard, slipped under the paperclip with the manuscript and return SAE. All the editor had to do was put the postcard into the post tray and in a couple of days I’d know that my work had safely reached someone’s desk.

I have to say at this point that my distrust of electronic communications borders on the pathological. I know that emails don’t reach their destinations sometimes, ditto text messages. It has always been the same with pigeon post. Things go astray. I just like to have some indication that this has happened.

Anyway, this morning I sent off my story, and within a few minutes I had an acknowledgement of receipt. That’s a first for me, and I applaud Meerkat Press for implementing such a simple but important element in their submissions process.

 

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Bad words are better than no words at all.

First working day of March. The curtains are stirring at the windows where a bitter wind is finding its way in. My fingers are cold on the keyboard and my thoughts are skittering about all over the place.

Bad words will be an achievement today. At least they will be written.

And it’s snowing.

Dead cats and naked bodies

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Two significant events happened on Facebook today. A friend drew my attention to a page advocating the slaughter of feral cats. The page was full of graphic pictures of dead cats, many decapitated. In my opinion, it was violent in the extreme. Along with other posters, I reported the page. The reports were rejected, as the site apparently didn’t breach Facebook’s ‘community standards’.

Another friend, an excellent writer of erotic fiction, posted that she has been told to remove all nude photographs from her adult-only blog site, or risk having the site shut down. Now, erotic fiction isn’t my bag, but I’ve seen the images and they are beautiful. They celebrate the human body. They are not offensive. They are artistic.

Elsewhere on the net, I’ve heard that atheist sites are being shut down because they are deemed to be ‘hate’ sites, aimed at Christians, simply for putting forward a different viewpoint.

So what is the nature of censorship on the internet now? The judgements seem random, but I think that is a generous assessment. Why target adult sites, which are clearly popular and clearly marked as for adult viewers only? The ‘family friendly’ argument doesn’t hold water. There is enough room on the net for all tastes.

Why allow a vicious, violent page to remain, uncensored, when it causes  distress to so many people with the sheer barbarity of its content? I am broadly against censorship, but there have to be some lines we do not cross. Barbarity, especially where it involves the weak, the helpless, those creatures, whether human or otherwise, that cannot defend themselves from evil actions or the celebration of those actions, must be challenged.

I have no answers to these questions, just a growing disquiet concerning the power being wielded by faceless organisations that pull us in with promises of freedom of speech and support for our businesses, only to change the goal posts when we are well and truly hooked.

One more question. If these same organisations would rather give us a the bloodied head of a decapitated cat to look at than a beautifully posed picture of the human form, what does that say about where the internet is heading?

Go Down the Rabbit Hole: A Writer’s Manifesto

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Great advice for all writers.

Writing for Digital Media

1. You are the work. The work is you: both an articulation of the self and a possibility for self-reflection. Be honest in creation: allow yourself to bleed into the work, but also allow it to work on you. Your work can show you things: illuminate and clarify your own thoughts, motivations, actions. If you do it right, you will find the work changing you, too.

2. Thinking is process. Laying on the floor. Sitting on park benches. Getting lost on purpose. These are all working. Learn the difference between mindless distraction and mindful wandering.

3. Go down the rabbit hole. Sometimes the work isn’t about what you think it is. Allow yourself to get lost down alleyways, to follow a train of thought around a corner. Don’t feel you need to reign yourself in. Too much focus squeezes all the possibility for revelation out of the work.

4. Fear…

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