Haiku – 18 February, 2016
Image courtesy of Kai_Vogel via Pixabay
On Reading Too Much Into Things:
i already know
before i turn the next page
how this story ends
Cancer
Haiku – Mon 18 July, 2016
Image via Pixabay
On A Forgetting and A Remembering:
a lurch in my gut.
the moment I remember
I almost forgot
Half-Arsed Haiku – Tue 14 June, 2016
Image courtesy of VictorianLady via Pixabay
Since my cancer diagnosis, I no longer save things ‘for best’ or for ‘rainy days’. I wear my favourite frocks whenever I can, scuff up my nicest shoes. I don’t worry about writing in lovely notebooks that I kept blank for years, afraid to spoil. I use those posh cosmetics and toiletries rather than hiding them away in drawers. I don’t worry about waiting for special occasions to use my ‘good’ glasses or crockery… They may break, so what, it is, after all, just ‘stuff’. I have an informal bucket (or fuckit list as I like to call it) with things I want to do, places I want to see – from the small and insignificant and ordinary to the big, blue sky once-in-a-lifetime deals. The small things are still important though. I try to do things now, while I can, when I can, when chemo allows. Because what if you hold off on using or doing the things you love, waiting for the right time and the right time never comes or it comes and you are in no fit state to make the most of it? What then? Life is too short and too precious. What are you waiting for?!! Live in the present, live in the now…
On Not Saving The Best Till Last:
use these things you keep
‘for best’. For when are you both
at yours if not now
Half-Arsed Haiku – Mon 2 May, 2016
On an Ode to Xeloda:
For you, I walk on
hot coals, wipe away salty
tears, wring red raw hands
My Red Right Hand (and left and feet…) Or my experience with Capecitabine / Xeloda
Today I had to travel into town to pick up a big bundle of medicine (what with the various tablets I take throughout the day, prescription or supplements I am like some sort of medicinal maraca!). I was conscious that anyone seeing me from the back, hat on or hood up, tottering along the road would probably assume I was an octogenarian. Hopefully they don’t think that when they see me from the front but from my demeanor I do probably come across more senior cit than saucy senorita. It’s my feet you see. They are the problem. On some cancer meds (Letrazole I am talking to you…)it’s your joints that are affected and again it turns you into a bit of a shuffler, and standing up or sitting down are always accompanied by the obligatory “oooooophhhhttt” or groan of “ooh my bones” and actually getting down onto the floor or up again would require at least a good five minutes of psyching yourself up for the maneuver .
On my current chemo drug however – Xeloda (or Capecitabine to give it its generic name) – my joints are fine but it’s my hands and feet that are paying the price. Palmar-Plantar syndrome is one of the most common side effects of the drug. When I initially started the drug I was on a much higher dose but the side effects were too severe to continue so they reduced it from 2 x 2500mg a day to 2 x 1500mg a day, so do make sure you let your oncology team know you are suffering from side effects as most can be eliminated by reducing the dosage. Many people take this with few problems at all (so don’t let my experience worry you too much as we are all very different in the side effects we get!) but in those first few weeks I totally lost my appetite and over a stone in weight (the only plus point as I was still a bit chubby from previous chemos), I came out in weird rashes, had thrush in my throat so couldn’t swallow tablets, got mouth ulcers, felt generally wiped out and my hands and feet went bright red, very tender and all the skin started peeling off. As a daily oral tablet rather than a weekly IV drip I had anticipated it being an easier chemo to cope with but out of the ones I have had this definitely hit me the hardest which was a bit of a surprise. It is a balancing act though – weighing up the side effects of the drug with the fact that it may well keep your cancer in check for a few more months ( some people I know have been stable on this drug for years!!!). A bit of tinkering with the dosage can keep things far more bearable. Other rarer side effects can include sickness and explosive diarrhea so I probably got off lightly really! I take the tablets two weeks running and then have a week off – so much easier than an IV drip, definately feels less like ‘chemo’ so sometimes I have to remind myself I am still on it! The rest of the side effects have disappeared but along with constantly weepy eyes and a runny nose it is the palmar-plantar syndrome that I am left to deal with and it’s better some days, worse others. These last few days have been ‘worse’ days as I am nearing the end of my two weeks and did a tiny bit of walking- it feels like my foot is one big blister waiting to happen, red and very tender in a distinct line up the side of my foot and on the soles where my feet have rubbed against shoes. I have been through a myriad of creams from Elizabeth Arden 8-hour Creme (a present!), Moo Goo to Udderly Cream (yes originally designed for cows’ udders!) and another farmyard favourite for horses that is a lovely pale blue goop, and from aloe vera and tea tree oil to really good Body Shop hemp cream via a Lush Oat hand cream. Nothing has worked miracles though but all you can really hope to do is try to keep hands and feet well moisturised rather than clear things up completely . Other advice is to basically keep off your feet as much as possible, avoid exercise (don’t need to be told twice), don’t have hot baths or showers (the latter I like too much to avoid), and wear slippers when possible. Today it felt like i was walking on slightly spiky hot stones, so I couldn’t actually wait to get home and get my slippers on (now I AM sounding like an octogenarian!) I bought cooling gels, pads and heel balm in desperation today so will give them and the henna a go tonight. Not brave enough to try it on my hands quite yet though…. eh Nick?!
Half-Arsed Haiku – Fri 22 April, 2016
Off to get my three-monthly CT scan results. As always, everything rides on this…
The Tree of Life:
so precariously perched,
trying not to saw off
the branch on which I sit
#scanxiety
A Little Bit Longer….
Normally I stick to tiny poems – my ‘half-arsed haiku’ or senryu (also called human haiku as they focus more on human nature or emotions than the ‘nature’ nature or seasons that are really supposed to be the focus of traditional haiku!). Today however I thought I’d get out of my comfort zone and post a slightly longer one in honour of World Poetry Day. Hope you like it…
On World Poetry Day – The Words, How They Help:
It helps to try and get the words out
somehow
those dry and dusty words
that build up
in quiet corners
the useless phrases that hide in cupboards
under stairs and sinks
the well worn words that sleep in coat pockets
among torn tissues and old bus tickets
the sly ones that
hide in damp leaves and still waters
the words that are maybe dark
but do not always run deep
the ones that threaten to burst out
in great gulps of air
those that would love to leap from my throat
to be caught by tender fingertips
or spat out
like too cold tea
the words that help
make sense
of the senseless
and light of the dark
that sometimes wraps itself around me
the words that give a face to my fear
that i may recognise it
slap it down
or kiss it better
the words that make me stop in my tracks
and listen
and notice
and take in the tiny
the insignificant
that are no longer
now I see
that what i thought was broken
is actually beautiful
that what was bitter
is so so sweet
#WorldPoetryDay
Half-Arsed Haiku: Mon 29 February, 2016
Image courtesy of StockSnap via Pixabay
On Less of a Leap, More of a Stumble:
did i waste this gift
of a day? these hours that slipped
by through sore fingers
Half-arsed Haiku Sunday 7 February, 2016
Image courtesy of Alexas_Fotos via Pixabay
On dealing with things my own way:
burst not this bubble
in which i must live – denial.
Truth – sharp as a tack.
Sunday 31 January, 2016
Image courtesy of Unsplash via pixabay
On Another One:
i swallow the soil,
eat damp earth,
roll in dark dirt.
you, you bite the dust
Thu 14 January, 2016
Image courtesy of Foundry via Pixabay
On My Mind Working Overtime:
3am. ‘The Fear’ grips me,
just for a moment, before
sleep takes hold once more
Mon 11 January, 2016
GIFs (c) Helen Green
On Wondering If We Sparkle Enough Will You Come Back Down Again:
waiting in the sky once more….
we’re all made of stars but
you shone brighter
RIP The Goblin King x
(c)Helen Green http://dollychops.tumblr.com
Half-Arsed Haiku – Sun 29 November, 2015
On a Hard Christmas Habit to Break:
all tinsel, tat and shiny
wings. more ebay angels
to watch over me
Half-Arsed Haiku – Tue 16 September, 2015
Image courtesy of Hans via Pixabay
On Dreaming of Such Delicious Things:
Forbid myself sugar.
Now I’m tormented by sweet dreams
– see cakes in my sleep.
I am taking part in a medical study prescribing cheap, common or garden drugs that have all been shown to have some sort of cancer-busting properties. So from statins to an anti-fungal tablet we are taking a mix of drugs none of which have been specifically designed as cancer treatments but all act to help kill or control tumours in different ways. Hopefully with minimal side effects too. And the drugs can also be taken alongside your conventional treatments such as hormonal drugs or chemotherapy so it’s an add-on not an instead-of which is good. I’m in the early stages of the study but there seems to have been promising results for some.
Another of the drugs I’m on is Metformin, usually prescribed to diabetics. As part of the overall drug protocol you are advised to try and cut down if not cut out sugar. I am taking tentative steps into this, trying to avoid refined sugar, mostly in sweet treats, not yet rooting around for the hidden sugar yet in unexpected savoury products! It’s been a week or so now and I am struggling slightly – given I usually try to avoid dairy too that normally means whole aisles of deliciousness in the supermarket are generally off limits anyway but i have become adept at finding cakes and biscuits and dark chocolate things that have no dairy in them. But now even these things also have sugar in them so they are doubly out of bounds. I am holding up ok, although after my rubbish news on Friday I was desperate to just inhale an enormous mound of Cadbury’s Buttons. It was only bad weather and sheer laziness that saved me from doing a supermarket sweep of the chocolate section. I am really missing a biscuit or two with my cup of tea though. Although who am I trying to kid – it never is just a biscuit or two really. Anyway I have cut down on sweet treats but seem to be filling the void in my life with savoury treats now so need to start watching my crisp intake too! And not only is the temptation there in my waking life but I am now being tormented by visions of cream-filled, chocolate, fruity, sugary, spongy loveliness in my sleep too. Although I seems to have in built guilt in my dreams as I was poring over various cake stands crammed with these amazing confections but new I shouldn’t have any. Jeez…even in my dreams I am depriving myself! They should be the one place I can happily indulge.
I am a bit erratic in my diet and lifestyle find myself swinging wildly from uber-healthy eating and supplement popping to thinking ‘stuff it – life is too short not to eat ice-cream. And cake. And Chocolate. And biscuits etc etc’. Usually in the same day / meal even. Yet my life IS likely to be too short and I feel, at least at this point, I need to give myself the best possible chance. So a healthier eating regime it is for the next few weeks. Oh and on the Metformin you’re not supposed to drink either … how come no-one mentioned THAT to me when I signed up!! Hopefully my willpower will hold up and I can deal with the whole no sugar, no dairy, no alcohol thing.
My diet may not be sweet, but life most certainly can be (especially when you consider the alternative) and I want to stick around as long as possible to enjoy it….
Half-Arsed Haiku – Fri 11 September, 2015
Image courtesy of Hans via Pixabay
On Knowing What’s Coming:
look into my eyes
tell me what you do not see
only then i’ll breathe
So not so great news at the clinic…. my cancer has spread again in the liver. The bits that were there are bigger and they’ve invited a few more friends along to the party. I was hoping for good news (well, a lack of bad really) but prepared for not-so-good news given the tablets i’ve been on for the last three months were ones I tried a few years ago. They were however a damn sight easier to cope with than chemo and allowed me a break over the summer with a good quality of day to day life. But it was a long shot they would work again. And they didn’t . So I’ll be starting a new chemo, Capecitabine, in October. This too is a tablet rather than IV drugs and although it seems to be a bit more gentle, we’re still talking relatively. And in chemo terms gentle still means the possibility of nausea, bowel problems (a delightful swing between rampant diarrhea and chronic constipation by all accounts), and the skin on your hands and feet becoming red and inflamed and cracking and possibly nails falling off. Oh and some weird scary chest thing that is rare but can be lethal. As I said… gentle. 😉
It is worrying when treatment after treatment can’t seem to stem the cancer tide. I feel like some Chemo King Canute standing at the shoreline tentatively throwing packets of tablets and IV bags at the incoming waves and panicking when I realise my ankles are getting wet. I know realistically I can’t stop the flow now but maybe I can protect myself for a wee bit longer. Give myself some more time. So let’s get the next batch of chemo sandbags out and get building our wall… Bring on the Capecitabine!!
Half-Arsed Haiku – Tue 1 September, 2015
Image courtesy of TanteTati via Pixabay
On A Glimpse:
dust settles on hair
and skin. we turn grey. like the
old i’ll never be
The Kintsugi Girl 