Blurb for ‘The Long Way Back’

When a fifty something divorcee and grandmother launches herself onto the European public transport networks and runs away to Istanbul, there has to be a reckoning and a return, whether it’s when the money runs out, or when the long-suffering family decide they’d rather have her somewhere they can keep an eye on her.

Can coming back possibly be as much fun as running away? Maybe, when it takes her via the Danube Delta in Romania, across the heartland of Mitteleuropa twenty-odd years after the tearing down of the Iron Curtain, and north through Scandinavia as far as Trondheim.

Did she learn anything from the experience of travelling alone for six months, or did it raise more questions than it answered? Did she find herself (or anybody else for that matter), and would she ever be able to settle down again and resolve the dilemma of what it means to be ‘home’?

‘The Long Way Back’ is the sequel to ‘Single to Sirkeci’, the continuing story of an ordinary woman who made a series of extraordinary choices and just kept going.

Posted in books, The Long Way Back, travel | 2 Comments

The Answers

The Answers

I know all the answers.
If I asked for help, I know what they’d say:
Nothing, or worse than nothing,
But well meant.
‘You’ll get through this; stay strong; be positive.’
Fuck you.

So I swallow it down.
Anger, frustration, nausea, weakness,
Running out of words.
Keep it down,
Down, down, down,
Squash it flat
Don’t let it out,
Don’t let them see what this does to you
Stay positive.

I am not a good person.
I am not strong and brave.
I am not ‘positive’.
I am crushed and I am angry and I want you to see me,
But I don’t want to deal with your answers
Because I know they will make me angrier.

So, what is it to be?
Honesty or platitudes?
Let them have their say?
Thank you and smile sweetly?
No one can help this
But should I show my weakness
Or keep pretending I can handle it:
‘It’s just a matter of time; you’ll get there; it will be worth it in the end’?
‘Stay positive’, for god’s sake?

‘Focus on getting well,
That’s all you have to do right now,
The mess will still be there when you’re able to deal with it.’
Well, clearly it will,
Only a hundred times worse by then.
In the mean time, it’s here,
And it’s crushing me down
And there is no answer
Because I know them all.

© Linda Rushby   01 June 2017

Posted in chemotherapy, insomnia, poetry | Tagged | 1 Comment

Not throwing up

Yesterday I was bursting to write about something, on the lines of: I seem to be progressively losing my grip on normality and ability to deal with life in an adult and responsible manner. Something like that. That I am becoming more and more eccentric, that things constantly slip out of my grasp (literally and metaphorically, like the knife that slides to the floor and misses my foot by millimetres, or the thought that simply refuses to shape itself into words.) All this was lost yesterday in the hurley-burley of trying to get on to my blog to post what I had managed to write; in the email which still hasn’t turned up to reset the password that I still haven’t remembered, (although that’s okay because I can still get to it on the old laptop, but for how much longer?)

However…

It seems reasonable to assume that these feelings are attributable to the change in drugs this time around – or rather the change in side effects from the new drugs which I have been taking to counteract the side effects from the same original drugs which I’m still taking. With me so far? So, hopefully, at some point I will no longer need the chemo drugs, and then will no longer be feeling the nausea, heartburn etc which go along with them, and will no longer need to take the drugs to counteract those etc etc etc.

But the fact remains that things do feel very odd at the moment. It’s hard to explain, especially as I didn’t manage to catch them adequately yesterday. Loss of balance (which was never very good in the first place), profound physical weakness (ditto) which makes me totter around like a stumbling drunk; a lack of connection to everyday reality and objects which, hard to believe, is even greater than my usual away-with-the-fairies carelessness, clumsiness and chaos. In fact, very much like drunkenness (or some other inebriation), as life seems to spin on just out of my reach and control, so that the best I can do is sit back and watch.

I am shedding now over my cats the way they shed over me, and we sit together in a miasma of drifting hair, ginger, tawny, brown and grey, forming clouds and settling over faces and furniture. Yet somehow when I look in the mirror my hair doesn’t look all that different, no dramatic bald patches (though it is certainly thinner, more brittle and much more unkempt and uneven).

Similarly, my mind seems to be able to keep going intellectually quite well – I did some design work for a while yesterday and have sorted out the issue of logging on to my blog quite adequately (provided I don’t lose the new password I had to create for the email that allowed me to reset the blog password).

And at least I’m not throwing up.

Posted in blogging, chaos, chemotherapy | 2 Comments

The post I wrote but took too long to post because of switching computers (never mind, it’s not worth reading anyway)

On an afternoon like this a year ago, I would probably be sitting on a windy cliff with a pencil and killer su doku book, scribbling in and rubbing out the last few numbers while watching the sun lowering through the clouds. Today I am doing the electronic equivalent while watching the sun through the window of my newly inhabitable office (a surprising change from the laptop-on-the-kitchen-table which had become so much a staple of my life, until a carelessly knocked cup of coffee threw me into a different routine).

Once I dreamed of surreality, a different life. By slow steps I constructed that different life for myself, never knowing how or why or what I was heading towards, but putting together a life which became surprisingly satisfying. Life now seems equally surreal, and also different, but also quite satisfactory in its own ways.

I guess I thought, after the last two summers, that my afternoons and evenings would continue to consist of a series of walks along the prom, past the castle, fish and chips in the rock gardens, trying to catch photos of the pier and the waves and the gulls. But now I have a different perspective,  even discounting the fact that the location of my walks, if I were to make them, would be nearer the boating lake and the rose garden (maybe even the cemetery). For now, I don’t feel inclined or able to make those walks at all, a trip to Sainsbury’s and back for emergency supplies taking more energy than I feel I can spare right now. But that’s just now.

I’m not sure why I”ve started writing like this – no, that’s not quite right, it’s fairer to say I haven’t got a bloody clue. It’s just the words, the words flowing again, as they sometimes do, with their own rhythm and their own imperatives. There, I’m sure there was something else I was going to say, but it’s abandoned me.

Just something about the light coming in through my west-facing window, and the life in the street outside, and… dammit, I just missed it again… was it something about life settling into its own paths?

Whatever. Must be time to go and get some dinner. Lamb chops with root veg mash (parsnips and carrots) and grilled aubergine.

Posted in blogging, life, Southsea, walking | Comments Off on The post I wrote but took too long to post because of switching computers (never mind, it’s not worth reading anyway)

Beggars can’t be riders

I woke at 5.30, which is pretty good as I’d probably been asleep for at least 5 hours. So I thought I should probably get up, no point lying in bed as I didn’t have time to get back to sleep before I would need to be up anyway. Instead, I started reading from my Kindle. I came across this quote and it seemed so accurate that I shared it on Facebook (so if you’re reading this, you may have read it already):

‘No one makes love like they make a wall or a house. They catch it like a cold. It makes them miserable and then it passes, and pretending otherwise is the road to hell.’ 
Richard Flanagan, ‘The Narrow Road to the Deep North’

I saw the strip of light above the top of the curtains and thought: ‘I could watch the sunrise’ (I posted this on FB as well, so you may also have read it, but then again probably not.) But instead of getting out of bed and opening the curtains to look, I lay there reading, every so often glancing up to see where it had got to, then when I heard the heating come on at 7, I got up and thought: ‘Now it’s too late, but I bet it was a good one, not like the pathetic one I got up for last week. There’ll be another one tomorrow. So it goes.’ And posted on Facebook.

Yesterday a very kind friend said in a message ‘Your spirit is remarkable! Really admire your bravery.’ I feel guilty because clearly this is well meant and I should be grateful, but seriously… It’s flattering but ironic, because, after all, it’s not as though I have any choice in this. Well, they say there’s always a choice, and I guess I could have said: ‘You tell me I’ve got cancer, but it’s not bothering me at the moment, not compared with the side effects from this chemotherapy, so forget the treatment, I’ll just let it rip and face the consequences.’ That, it seems to me, would have been a brave choice – foolhardy, ungrateful, self-destructive, crazy no doubt, but certainly courageous. And it would require a hell of a lot more ‘spirit’ than I’ve ever possessed – not least because it would fly in the face of what everyone expects and wants me to do.

Thinking on this and that reminded me of a counsellor I saw over 20 years ago who asked me ‘What do you really want?’ and when I started my answer with ‘I wish…’ interrupted me with : ‘If wishes were horses beggars would ride – what do you WANT?’ I didn’t have an answer for him – except one I was too ashamed to admit to. I expect I then started crying (that was another thing he didn’t like, the way I cried silently, trying to hide it, he said I needed to scream and let it out, he said the way I cried was like I was constipated.)

What I would probably say to him now (and I’ve thought about it a lot over two decades in between) is that there is no point in wanting things that you know you can’t have, you can only wish for them, so if the question is ‘what do you WANT?’ you have to be aware of the options before you can make that choice and answer that question. And it didn’t seem to me at that point that I had many feasible options other than the life I was living. Because there’s only so much in life that you have control over – the main problem being that too many things depend on other people’s choices and preferences, which limit what you can do.

And what I wanted – wished for – at the time, (and what I knew he wouldn’t approve of) was ‘love’, or the possibility of finding a hopelessly idealised kind of love; the freedom to go looking for that kind of love, something I felt I’d never known and, at the age of 42, had no realistic chance of finding. It took me more than another decade before I took the leap and grabbed that freedom and set out to find that love, and another 5 years ago to realise that age had nothing to do with it: it was me that was the problem at whatever age – just as I hadn’t found that deep love in my 20s, I wasn’t going to be able to find it in my 50s either because I’m just not the sort of woman who inspires that mythical kind of love – or, honestly, is capable of returning it.

Posted in cancer, chemotherapy, life, reading | 2 Comments

Routines and activities

I didn’t write anything yesterday. Today… I don’t know what to write about. But I’m here.

I am eating porridge with nuts, raisins and prunes. Then toast, coffee and chemo pills.

I did ten minutes of very, very gentle yoga when I got out of bed this morning. Before I moved to this house, I developed a longer routine that I could do every morning (though I wasn’t very consistent). My bedroom in the flat was a lot bigger than the one here, with plenty of floor space, which is one reason why I haven’t been doing it (though there are others, like not feeling it was a priority). It’s one of those things, like daily blogging, which I know will be helpful if can stick with them, but are so hard to commit to.

Morning routines do set the tone for the day, though. Yesterday for example I didn’t get up till almost eleven. I hate that – it really messes me up. The night before, I’d stayed up later than I should, then couldn’t settle to sleep (evening routines are important, too). I always wake up in the early hours and can’t get back to sleep, but I usually manage to go to sleep quite well when I first get into bed. So when I woke around 5 yesterday, instead of getting up when it got to 7, I stayed in bed and did eventually get back to sleep.

Sorry, I have a tendency to get a bit obsessive about sleep (or lack of it). Possibly because, writing first thing in the morning like this, it’s uppermost in my mind. Sleep and bowel movements. Hey ho, what fun.

It’s raining today. Yesterday was sunny, though I didn’t venture out. Yesterday was a day of listening to plays on the radio (Radio 4 Extra and BBC iPlay Radio are my lifelines) and cross stitching. I am making a birth record picture for my grandson, I’d like to get it done before his birthday next month, and although I had a break from cross-stitching for a couple of years when I got more into crochet, it’s become a bit of an obsession.

I guess I can divide my activities into constructive and time-killing. The latter includes things like playing Freecell or Microsoft Jigsaw – or even su doku. Or watching telly. But doing cross stitch is constructive, and makes that time constructive, even if I’m also watching telly (or listening to the radio, which somehow doesn’t feel as bad as telly). I guess anything creative is constructive in that respect, whatever the outcome. Even writing drivel.

Posted in creativity, cross stitching, insomnia | 2 Comments

Cycle 1, Day 8

One week in, 17 to go – or thereabouts. And a new month.

Yesterday I ventured into Sainsbury’s Local in search of prunes. There was an old man coughing in the aisle. I kept dodging him but he kept reappearing, and I left the shop (without finding any prunes). I should have gone to the health food shop but didn’t want to wait for it to open at 10.00. I bought the prunes – shiny, sweet and sticky – in Tesco Local.

I’d called the surgery as soon as it opened and explained my problem and why I didn’t want to go and sit in the waiting room for the drop-in surgery. The receptionist said she would get the doctor to call me at the end of the surgery, that he could call-through a prescription to the pharmacy, and that they would deliver to my door, which they did. So now I have prunes, and nuts, and laxative, and even suppositories, should things ever get as desperate as they felt on Monday evening and night. I vomited back the first dose of laxative, but maybe that was because it was on an empty stomach. It was the first time I’ve been sick, and worrying because I can’t risk bringing back my chemo meds.

I have to keep eating, as well as I can. Hard not to think back to when I was ill in autumn/winter 2014 and couldn’t eat at all – I must not let that happen now, though in many ways things feel very similar. At least this time I know what this is about and why it is happening, and that it for a good reason with good hopes for a positive outcome. In fact, the lump in my armpit is shrinking already – before the start of treatment it felt huge and throbbing with pain, now it is back to just a lump. Maybe that was all psychosomatic, but it’s a comfort.

A few weeks ago, when I was blogging in secret (or at least knowing that no one would read it) I was warned that there was a danger in becoming ‘narcissistic’. But on the whole I have found that writing my thoughts and feelings like this is overwhelmingly positive. I’m not sharing them in a bid for sympathy or reinforcement, even less for advice, but simply to feel less alone – and because people might find it interesting.

I am feeling my way. On days when I feel good, I must be realistic and cautious. On days when I don’t, I must hang on.

Posted in chemotherapy | 2 Comments

Chilled out

I didn’t blog yesterday because I spent Saturday night in the hospital.

Right, now I’ve got your attention, here’s the story…

The thing they stress about chemotherapy is that it shrinks the cancer by stopping the cells from dividing, but this also affects your normal cells, including the ones responsible for the immune system. This means you have to be ultra-careful about avoiding infection, because even something apparently trivial can rip through your system and become life-threatening. The hospital has a 24/7 Acute Oncology number which you can ring with any question at any time, and they give a list of symptoms which they recommend you check and call about. One of these is temperature outside the range 36-37°C (low temperature can be a sign of infection as well as high).

This was all explained at a ‘Demystifying Chemotherapy’ talk that I went two a couple of weeks ago, and it is pretty damn scary, but I put the number into my phone, (telling myself I’d probably never need to use it) and bought an electronic thermometer.

On Saturday afternoon I was sitting in the kitchen at the laptop, feeling a bit chilly, though I knew that it wasn’t really that cold, in fact it was warm enough for the thermostat to stop the radiators coming on, the first week it’s been that warm. I took my temperature anyway and it was 35.8°C, which is below the bottom limit, but then, it was only a cheap thermometer, maybe it’s not that reliable. And the heating was actually off at that moment, it would be coming on again later. So probably not really worth triggering a phone call to the hospital. No, not really. I put an extra cardi on.

I kept checking my temperature at odd times through the afternoon and early evening, hoping that it would have gone back into the normal band. When it dropped to 35.3°C, I decided maybe I should call that number after all.

I explained the situation to the nurse who answered, then she spoke to another nurse, and called me back, and at last said that I should pack an overnight bag and come to the hospital. This was about 9.00pm. I explained I’m on my own and there was no one to bring me.

‘You can call 999, but it will probably take about 2 hours, so if you can afford to get a taxi, do that.’

In a panic, I grabbed my backpack and threw in a nightie, dressing gown, change of undies, tablet, Kindle. Rang for a taxi, which arrived almost straight away, and sent me further into panic as I tried to think of what else I needed to take with me. The text told me the driver’s name was Eugene Ionescu, which was pretty weurd in itself – who gets driven to hospital in the middle of the night by an absurdist dramatist of the French Avant-garde??? The whole situation felt disturbingly surreal, especially when I got into the back of the huge minibus and couldn’t find either my cash purse or my phone, and continued to rummage through my bags while we drove through the Saturday-evening streets.

At the hospital I explained to the driver that I had cards but not cash – he couldn’t take the card, but was happy to wait while I went into the hospital and withdrew cash to pay him – in fact he was really nice and kind and had the right change ready when I rushed back and thrust the tenner into his hand, quite a contrast with my past experiences of Romanian taxi drivers (in Romania.)

I went up to the Acute Oncology ward where a lovely Fillipino nurse called Ana took me to a private room (‘the one with the nicest view!’), smiled and laughed with me and was kind, took my vital signs and a blood sample, brought a cup of tea and penicillin on an IV. Suddenly all the fear was gone. It was out of my hands, I was here with people who cared and would look after me, who knew what they were doing and what was needed. I relaxed. I’d done the hard part – the phone call, the packing, the getting the taxi, the paying the taxi, the finding my way here. That was all terrifying, because it was down to me, my responsibility – but here I was safe, all I had to do was do as I was told and all would be well – or if not well, at least as well as it could be.

A young doctor came and I spoke to him about the slight chestiness and dry tickly cough I’ve been feeling the last few days, we talked about managing my asthma and the fact that I’ve had a flu jab – ‘Excellent! You’re one of the good ones!’ was his verdict – they x-rayed my chest and that was clear. They kept me in overnight but in the morning one of the oncologists from my consultant’s team came and spoke to me and said everything was fine and I could go home. I found my phone in my backpack (but not the charger), and I’d forgotten to take my chemo meds with me, so must remember to do that if there’s ever a next time – but they weren’t unduly worried – ‘…you’ll be okay to miss this once…’ (actually I had them when I got home). No one was impatient with me or made me feel that I’d wasted their time or was a fraud – as I said to nurse Ana ‘…sorry if this is a false alarm… but actually I hope it is a false alarm!!!’)

I came home with another friendly taxi driver, thinking: I can do this – even though I live on my own and am a long way from my family (my choices and I don’t  regret them), I can do this because there is a system and procedures and people who will help me, and there are things I can do to manage situations like this better next time.

Posted in chemotherapy, hospital | 1 Comment

Blogging

Yesterday I thought I would start blogging again. I got up to write, but ended up checking emails, and answering them, and posting on Facebook. And that sort of writing took up everything I had to write and that was that.
Today I woke at 5.00, and listened to a radio play for an hour, then spent another hour listening to Fall Asleep music and doing counting games and generally brooding and then I got up. As you may know (depending on who you are and how long and how well you’ve known me), this is all pretty normal. It used to be that this was the time when I would get up and write, 500 words every morning, the same sort of drivel I’m writing now. I once tried to work out how many words I’d written down the years – suffice to say it was in the millions – enough for at least a shelf-full of the most mindnumbingly tedious and repetitive stream-of-consciousness tomes ever written, totally lacking in any narrative drive or structure, any beginnings, middles or endings (well, maybe some beginnings and endings), no story arc, no three-act structure, no hero’s journey.
Just me, getting up in the mornings, making coffee, feeding any cats which might be available (from two to none to one to none to one to two to one and now back to two again), sitting down at a computer (usually – sometimes a notebook depending on the circumstances), and writing whatever pops into my head.
My tentative beginnings at daily writing were completely private, mostly written on paper, and never intended for others to read, but an emotional and personal crisis in 2005 drove me to start sharing them in a strange semi-open, semi-closed space, where in theory they could be read by millions, but there was no guarantee that they would be read by anybody at all – a blogger was born. Anonymity was liberating and intoxicating – I could write exactly what I was feeling and thinking, with no self-editing, no self-censorship, no restraints (well, maybe a few). Words just poured through my head (as they do anyway, despite my best efforts to subdue them), down my arms, out through my fingers onto the keyboard and thence into cyberspace.
Aarrgh, no self-editing. I just stopped and read back what I’d written, and now I need to start again because I’m over a hundred short of the 500 word target and I’ve lost the train of thought. It happens.
So, I started posting anonymously every morning about what was happening in my life, and was rather excited and rather shocked to find that there were other people reading what I’d written and responding – remember, this was pre-Facebook, social media just was not a ‘thing’ (as they say nowadays), even communicating by email, instant messaging (remember when MSN was on the cutting edge? I couldn’t even remember what it was called and just had to Google ‘Microsoft instant messenger’ to get the name) – mobile phone and text were relatively innovative and daring.
Anyway, they did read, and they did respond, never in huge numbers, admittedly, but a few, and some quite regularly, and… oh look I’ve fulfilled my quota!
Maybe more tomorrow.

Posted in blogging, writing | 2 Comments

Pilgrimage

Catching that Train

Last week I posted a poem which I composed during a walk on the beach and wrote down in my notebook while sitting in a cafe. When I typed it up, the previous piece in the notebook was something which I wrote on the train down to Dorset for the New Year. At the time I decided against typing it up and posting it, but I think now is a good time to do so.

Catching that Train

‘If I catch this train, everything will be okay’ I told myself. The converse: ‘What happens if I miss this train?’ flashed briefly through my mind, but I quickly blotted it out.

Out of London, past the stark grey concrete of close-packed buildings, railway depots, empty factories and heaving distribution centres of an economy that no longer makes anything at all, just shifts it from pillar to post. Through cuttings, between ivy-grown embankments, under crumbling red-brick bridges, light shining silver on rails that merge and separate outside the windows. Ponds and streams throwing back reflections of trees, solid men in bright jumpers pulling trolleys over the tidy close-clipped hillocks of suburban golf courses.  Minor stations for minor towns, not worth stopping at. Fields white with frost, hedges white with blossom, brilliant sunshine on the vivid green shoots of new crops.

Five years since I first made this journey. Then it was an adventure; now it is almost familiar, but not quite banal (never that). Too many adventures to remember in the meantime. An annual pilgrimage: six journeys, twice by car, four times by train – I prefer the train. Through the fag-end of the dying year – although, somehow, it’s always sunny when I make this trip.

The south country calls to me, shiny silver birches and low sun bursting through the pines over the russet bracken of the heathland. Fruitcake and tea from the trolley.

I dreamt last night of a man I met, of love, of closure, of my happy ending, the one I waited for so long. I woke and remembered I was catching the train today, or maybe I wouldn’t, it all depended on that phone call, the one I missed again, no time to get the phone out of my handbag before it rang off, without a message.

I called the number from the letter and left a message: ‘If you are calling to say you can see me tomorrow, please call again and let me know before 11.00 and I will come back today.’

Why is this business about the phone calls, and whether to go away, or go home, more disturbing than the longer term, and what might happen? It’s an issue of control, I guess, of responsibility, what lies in my hands and what outside.

Watching a heron fly slowly across the treetops, then we are out of the Forest, back to broad fields and suburbs. No ponies this year, but soon we will be crossing the edge of the sea, at Poole Harbour.

Six annual pilgrimages and this may be my last. But that is true of every year, for every one of us. We just choose not to think about it.

If I’d missed that train, I would have missed the connection at Waterloo. And I would have gone home, already decided that, cancelled my New Year weekend away. Perhaps they would have done those extra tests tomorrow, who knows? I told them I was going to be away – and what difference will another week make, anyway?

I am moving now, travelling, making my pilgrimage. Down in the cutting, the old-year sun strikes the ivy leaves wrapped around the trees, and the sky above is as blue as any sky I have ever seen.

‘Happy New Year’ says the ticket inspector as someone leaves the train at Parkstone station.

I am moving. Better here, watching the sun, the trees, the passing view, than home alone, waiting for that call from the hospital.

Happy New Year to us all.

© Linda Rushby, 29 December 2016

Posted in cancer, trains | 2 Comments