a new chapter …...

I really hoped that I would not have to write anymore about my cancer, that I would be able to close the cover on that book and yet here I am adding a new chapter to the story.  The words don't seem to be so easy to find and write down in coherent sentences today … it's been a long time since I wrote anything here.  In 2016 I went back to full time work, which was both a joy to be 'back to normal', but also exhausting.  A full day at work, a long commute and time spent looking after my horse used up all the energy I had available, leaving very little energy for creating things and writing here and so I stopped.  And now ….. well now I find myself recuperating in bed and with time on my hands after under going another two major surgeries as my cancer has made it's presence known again.  

I'm not sure where to start with this chapter of the story ….. I guess the beginning is as good as any! Throughout 2016 I had a few niggling symptoms and some pain, some of this was probably due to scar tissue formation and the consequences of the abdominal surgery I had when I was initially diagnosed with ovarian cancer.  So I had more scans and tests, but nothing concerning was found and I started to get on with the process of living again.  We were able to go on a holiday to Italy and visited Milan and Bologna, both such beautiful but contrasting cities.

In Milan we stayed in a wonderful Airbnb called 'The turquoise door', a quirky apartment in a crumbling courtyard hidden away from the hustle and bustle of the city.  We spent a couple of days walking along the canals of Milan, taking in the city, eating great food and making friends with the local cats.

Then we caught the train to Bologna, and Bologna stole our hearts! From the colour of the buildings, and the layout of the streets, to the people and the ice-cream, oh my the ice cream was so good!

We had a fantastic meal at the Drogheria della Rosa, Via Cartoleria 10, if you ever find yourself in Bologna I'd recommend trying to get a reservation there.  We had a table on the pavement, there wasn't really a menu but the most wonderful food kept arriving at our table and the wine kept flowing.  It was almost like theatre watching the owner interact and entertain his guests and that's what we were made to feel like, guests dining in his home.

And then life came to a standstill again …… one morning in October as I was in the shower I felt a lump, about the size of an egg, just above my hip sitting within the muscles of the iliac fosa; the pace of my heart quickened and that cold as ice feeling of fear spread from my head to my toes.  And so it was back to the doctors, first to my GP to ask was it normal to have a lump just above my hip? Apparently no it wasn't normal… cue a worried look from my GP and an emergency referral to the hospital.  Two weeks later my lump was being examined by gynaecological oncologist (try saying that quickly); who was slightly perplexed about where the lump was and what it could be, it was superficial (i.e. just under the skin and in the muscle) which was seen as good thing, but to be sure it was nothing to be worried about I was sent for an MRI scan.

Over the last few years I've had a number of MRI and CT scans and have become familiar with the routine of how they unfold.  From the reassuring voice that asks you to lie still and hold your breath to the comforting smile as they undo the straps that hold you onto the scanner bed once the procedure is over.  This time though it was different …. after the initial scan they decided to add a contrast dye into my veins; they brought me out of the scanner to set this up and that's when the radiographer spoke  to me asking 'how long ago did you find the lump?'  I guess it was not just the words that were said but there was something in the tone of his voice, that made my heart beat faster as my fight or flight response kicked in, and then and there I knew that this lump of mine was going to be trouble. Things happened quickly after this, there were many phone calls and hastily arranged appointments, my lump had nodules (apparently that's not a good sign) and was sitting very close to the peritoneum (the membrane that covers the internal organs of the stomach cavity); there was a possibility that the lump has grown through the peritoneum and into the ceacum (part of the large intestine). And so by the second week of December I found myself again in a backless NHS gown waiting to go down to theatre for surgery.  I cannot give enough praise for the NHS and the people who I encountered during this time; I feel so fortunate to have been in the care of one of the most considerate, patient, kind, articulate and skilled surgeons I have ever met.  I woke up from this surgery to find my surgeon waiting to speak with me; the lump had been contained within it's own packaging or membrane, so although he had made a large hole in my stomach muscles to remove it and had patched me back together with mesh my intestines were still intact as the lump had not grown past my peritoneum … happy days!  After three days I was back home with another scar (only a mere 15 cm this time) and beginning the process of recovery yet again.

Two days before Christmas the phone rang … even though the ring of the phone was just the same as it always is I had an ominous feeling about answering that call, though maybe in retrospect because of what I now know as I recall this I could put that ominous feeling down to prior knowledge!  The pathology results were back and what I feared most came true, the lump was ovarian cancer (clear cell carcinoma) again.  For a while I didn't want to name it, to say the word cancer out loud and own it so we kept this news to ourselves. It seemed wrong to bring our friends and family to this place of desolation we found ourselves in again over Christmas time.

Well the introduction to this new chapter has been rather along one, and there is more of this story to tell, but for now I feel like I should join the ends of the circle …. my last post was about a new years walk along the beach so I want to finish by sharing some pictures of an end of year beach walk for 2016.  I say walk it was more like a shuffle for me! Though I got to share it with some of my favourite people and we had an impromptu mitten photo session too!

a walk on the beach

 Happy New Year to all you lovely peeps out there!

It's funny how traditions are established, for us a New Years Day walk along a beach has become something we just do.

It's a great way to blow away the cobwebs.  And this year especially a chance to reflect and take stock of the year that had past.  We headed to St. Andrews, the beach there is one of our favourites, but I would probably say that about most beaches!  I love being by the sea!

It was a blustery day, so we walked with our heads down against the wind and I found myself getting lost in my own thoughts; thinking back to other walks we had taken along this beach.

There is something so good about the rhythm of walking to help all the thoughts that tumble about my mind come together in some sort of coherent order.  I thought I would be glad to say goodbye to the year, to all the devastation and fear that it had brought.  But when I thought more about everything that had happened I remembered the good as well, all the love, care and compassion I have been surrounded by and I noticed a subtle shift in my thinking too. I realised over the last year I have learnt to be more present, to stop over thinking about what has been and what could be to come and instead take in the now.

There are always so many beautiful shells on this beach, and it's hard just to choose one or two to pick up! I choose these two as a reminder of our New Years Day walk.

None of us knows what our future holds, and while my future still feels uncertain, I hope that I will be able to walk along the beach next New Years Day.

road trip ….

At the beginning of autumn I ventured out for a 700 mile round road trip.  It felt like a big step to head off on my own, but also great that I was strong enough to travel by myself.  I drove south to Wales to attend a retirement dinner; to revisit old haunts.  I picked an eclectic mix of music to play as loud as I wanted, and drove with the windows down :-) 

The Macabees
Ash
Daughter
Turin Brakes
Arctic Monkeys
The Horrors
The National
Delphic

It is 24 years since I first arrived in Bangor; I thought the city would look different and in some ways it did, but so much was the same; just the trees were bigger!  It was wonderful to spend time with old friends, to walk along well known paths and discover some new things too, like Hanks - a beautiful yarn shop in Menai Bridge.

The colours of yarn on display were lovely; I couldn't resist the plum malabrigo, which I used to make some 'Not-so-tiny-slippers' (pattern is by Ysolda), I made some insoles to go in the slippers to give them a bit more structure.  It's a great pattern, quick to knit and the slippers make a great gift, I hope to make more for Christmas.

learning new words ….. omentectomy

(image from https://en.wikipedia.org/wiki/The_Omen)

As well as the enormity of dealing with being told you have cancer, cancer brings with it a whole new language to learn, and words to get tongue-tied with.  One of my favourite (umm not sure 'favourite' is entirely appropriate) is omentectomy, which immediately made me think of Damien and 'The Omen'.  My next thought was what the hell is an omentum and how can I have hung out with this body of mine for forty one years and have not a clue that I even had an omentum? I find medical words hard to pronounce, but they are put together like lego blocks, making their meaning slightly more easy to understand. The suffix 'ectomy' comes from the greek εκ-τομια meaning the act of cutting out or in medical terms the surgical removal of a specified body part; as in appendectomy, removal of the appendix. Wikipedia has a list of all the possible 'ectomies' that can be done - who knew there were so many body parts that can be removed - ouch! The name omentum stems from the embalming practice of the ancient Egytpians, who would assess a persons 'omens' by looking at the structure of the the organ that we now call the omentum.

So I learnt that an omentectomy was not the removal of the 'Omen' from me (but considering the nature of ovarian cancer 'The Omen' would be a suitable name for it).  Instead an omentectomy is the removal of the omentum; a sheet of tissue, or more correctly a layer of two membranes, containing  blood vessels, nerves, lymph vessels, lymph nodes and fat that lines the abdomen.  The omentum, or to give it it's correct name the greater omentum (there's a smaller one too), lines the stomach and other abdominal organs.  The omentum is not the first organ that comes to mind when you think of a body part, and in a similar vein for a long time surgeons/medics didn't give it much of a thought or have clue as to what it did or why we have one.  It is now known that the omentum acts as an abdominal bouncer or body guard; it plays a central role in defending the abdomen from infections by sealing off infected and inflamed areas; providing a rich source of leukocytes (or white blood cells), the cells that can seek out and destroy bacteria, and promoting  healing.

With ovarian cancer the omentum is removed as ovarian cancer cells have a predisposition to migrate (or to give cancer cell migration it's proper name - metastasise) to the omentum; it's removal firstly helps to stage the cancer (i.e. are there metastatic cancer cells already in the omentum) and secondly provides a therapeutic benefit as it can decrease the possibility of the cancer cells spreading from the ovaries via the omentum to other organs such as the stomach and intestines.  Removal of the whole of the greater momentum is called a supracolic omentectomy, which is ironic as I since had an awful bought of colic after my omentectomy! The long-term impact of having an omentectomy is not fully understood; reviews that I have read caution that careful consideration needs to be given before it is removed - which for me just adds to the sense of foreboding and seriousness that, as my omentum-free intestines grumble away, comes with a diagnosis of ovarian cancer. 

twenty years ago today ….

One of the best decisions I've ever made!  We were so young when we married, we've grown up together.  My mister has helped me become the person I am today.  When he said in sickness and in health I don't think he realised just how much sickness he would have to deal with, but he's been by my side every step of the way.

five months into this gig …..

I saw this quote on someones wall a while ago, it comes from the poem 'A Summer Day', by the American poet Mary Oliver:

Who made the world?
Who made the swan, and the black bear?
Who made the grasshopper?
This grasshopper, I mean -
the one who has flung herself out of the grass,
the one who is eating sugar out of my hand,
who is moving her jaws back and forth instead of up and down-
who is gazing around with her enormous and complicated eyes.
Now she lifts her pale forearms and thoroughly washes her face.
Now she snaps her wings open, and floats away.
I don't know exactly what a prayer is.
I do know how to pay attention, how to fall down
into the grass, how to kneel down in the grass,
how to be idle and blessed, how to stroll through the fields,
which is what I have been doing all day.
Tell me, what else should I have done?
Doesn't everything die at last, and too soon?
Tell me, what is it you plan to do
with your one wild and precious life?

The last two lines have been floating around in my head for a while now; whenever they come to the forefront of my thoughts the only answer I've been able to come up with 'is I have no idea'.  So I decided to have a go at hand lettering and painted the above, it's a bit rough round the edges but I plan to hang it somewhere I will see it every day, in the hope that one day I'll figure it out.  Even though I don't yet have an answer, what I am acutely aware of is how precious life is.  

It's now five months (how is it possible that time can pass so slow and yet fly by at the same time) since my surgery; so I can look back and see how things have changed here's where I'm at.  In the first few weeks after surgery, while searching about recovery after a hysterectomy, I found this comment - 'after four months you will have whole days that go by in which you do not think about having had surgery' on the Hysterectomy Toolbox blog. At the time I couldn't believe it could possibly happen, everything I did or felt was dominated by the impact of the surgery; but over time I have found myself thinking less and less about the surgery and it's true whole days do go by without me giving it a thought.  In many ways my post-surgery body is back to where it was pre-surgery - I'm back running (albeit rather slowly); I'm cycling and horse riding again and I've started back at work.  I can fit into my regular clothes and the scar no longer feels sore and tender - I can wear jeans again! And yet I feel that there is an almost imperceptible vail surrounding me; from the outside I look like the same old me - but cancer has changed me - it's grip still holds me tight and it's not something I really know how to come to terms with.  The broken sleep, tiredness and fatigue still plague me as do the night sweats and other menopause symptoms that need to be managed on a daily basis; and the nagging pain that remains on the left side of my pelvis is a constant reminder that life really is precious and it is about time that I figured out what to do with the life I now have.

knitted goodness

There's something about knitting, something that goes beyond just knit and purl. Over the last couple of years I've read a few comments on blogs and instagram about knitting being good for the soul.  For me the wonderful illustrator and artist Katie Green sums up what I fell about knitting in an illustrated article in pompom quarterly Winter 2014.

Image from pompom quarterly winter 2014 - illustrations by Katie Green

Her beautifully illustrated article (called knitting saved my life) describes how knitting became a lifeline for her during a period of deep depression, that she found the familiar repetitive motion of knitting soothing and that creating something gave hope, knitting meant learning new skills, patience and learning to enjoying the process of creating.  

It's now been over six months since I was diagnosed with ovarian cancer and time and time again, especially during the very dark moments, I have found myself knitting.  The rhythm of knitting calming my mind as it raced ahead as to what might be. There is so much more to write about knitting, especially how learning to knit has helped me let go of perfection! I enjoy knowing that each item I make contains some stitches that aren't in the right place and how, to me anyway, those imperfections mirror life but most importantly that it's ok that something isn't perfect, it truly is the process of creating something that is fulfilling!

Here is some of the knitted goodness I've been tinkering with over the last six months:

Lamb hat - this was a knit along by Jenny Gourdy of Wiksten, details can be found on her instagram feed, more images of lamb hats can be found at #wikstenlamhat

Puerperium cardigan - this was for my newest nephew, who was born in April, I made lamb hat for him  too and a little pixie cap to go with the cardigan.

Small cable sweater - loved this pattern, this jumper also was for my nephew, credit for the yarn/colour should go to magimix on Raverly - she knitted this jumper as a sample for her lovely shop  Be Inspired Fibres.

A second wee envelope (the variegated green above), also for my nephew but in a larger size and yet to be gifted !

Granny's favourite - for a friends daughter

And as I can never seem to settle to be a monogamous knitter, here's a list few other projects I have on the go at the moment! 

Miffy, Owligan, Knitted socks, Loch ness monster, Red roof croft house, Lila and Hediye

Floored...

Recently I've felt absolutely floored, my get up and go has 'got up and gone'; projects like the sock above lie around the place, unfinished; ideas come and go but I can't be bothered - with anything.  Sometimes it feels so unreal that I have cancer, something so serious, I really can't believe that it true.  I feel like I've become very selfish and introspective, cancer makes me think about 'me' rather than others - I need to change my outlook stop looking into myself, and start looking around me and discover the world out there again

stepping over the line

Today she crossed over the line and was gone,
and so was her suffering and pain,
I will miss her.

chasing time …..

For a while there, I wasn't sure how much of a future I had.  But I guess none of us really knows how long our futures will be, we never get to see the 'bus' until it's about to hit us!

In the aftermath of the last three months I'm left wondering how much sand is there left in the timer?  I can't decide, after being told of my prognosis, has the timer been turned over and reset? How many more sand grains are left?

The situation is paradoxical - only time will tell if the cancer has gone or if it will return, but once that time has gone I can't get it back.   I'm left wondering what the hell do I do with my life now?  What do I do with the time I have?

Some people say you should live your life like every day is your last, and while I fully embrace living without regrets, trying to live life to the full, cramming in everything can be exhausting and I'm exhausted enough as it is right now.  I am was a day-dreamer, but for now my day-dreams have been paralysed by fear, the fear of not knowing how far I can look forward, of not knowing what is to come.  And so for now I'm not making any plans, I'm trying to breath in the moment and stop chasing time. 

on my bedside table

A few things on my bedside table making me smile; muscari from the garden (hello spring), dipped terracotta jug from Decorator's Notebook; glass dish from iittala, the rabbit light, a gift to myself; the felt covered stones I made to remind me of something I hold dear to my heart; and the lovely Alium table light is by Hannah Nunn.  I bought it from Boo Vake a few years ago, but just realised it was made by Hannah Nunn when I read an article about her work in April's Country Living. 

six weeks, sutures, scar and sleep

Six weeks have past since my last surgery, so I can look back and see progress, here are some of my thoughts and observations (sorry if the images are a bit gruesome).

The above picture is of two of the four sutures from the first surgery (there was another near my right hip and one in the pit of my belly button).  Most of the action was on the left side of my pelvis, as that is where the cyst was and where the cancer was found.

Here is the scar from the last surgery, nearly all 20 cm of it; I think it has given my belly a slightly 'upholstered' look!  

At six weeks I'm off all pain killers, the scar is itchy and very tender at times and I still can't bare the thought of any tight or restrictive material on or close to it; I miss wearing jeans!  All of the post-surgical complications, the severe vomiting that put me back into hospital and the colic/stomach cramps that meant I survived on custard and boiled rice for most of a week have gone (thank-goodness).  Now I am left learning to manage the fatigue and the evening swollen belly.  I'm walking further and longer each day and I hope to be able to swim soon; all of the muscle tone I had has gone and I am decidedly wobbly in places!  But I can now cough, sneeze and most importantly laugh without pain, hurrah!

One demon that has reared it's head is night sweats; I knew that as soon as I came round from the surgery that removed my ovaries (and the rest of my reproductive organs) I would be in a 'surgical menopause'.  For the first couple of weeks as I vomited and couldn't eat I thought I had managed to circumvent any menopause symptoms!  Ha, I should be so lucky; over the last 3 weeks the night sweats have increased in number and duration. I now wake every 1.5 - 2 hours through the night drenched in sweat - oh the irony it's almost like having a new born, ha!  I miss undisturbed sleep!  While I can cope with broken sleep, as I spend my days healing and resting I have no idea how I'm going to manage when I'm back at work. I can see that the physical symptoms of the surgery are healing and each day I feel that my body is more like the one I knew before the surgery; some of my pre-surgery fears haven't come to fruition and some I've faced head on and found that they weren't so bad after all.  However, I'm conscious that so far I've only focused on the physical side of the surgery, but there is a whole other side to cancer; the not knowing, the dark thoughts that swirl around my head, the implications and the deep dark cavern that deserves a post of its own. 

ice cream and things

Over the easter weekend my mister took me out for ice cream (mint choc-chip …. yum) and a short walk!

We sat by the harbour, there was a sea haar (mist) travelling up the river giving an eerie chill to the warmth of the sun and hiding the far river bank in it's misty cloak.  

As we wandered along the harbour edge we came across a drift of swans ….

They were so serene and effortless as they floated around in the harbour.

A couple of things on the needles; just to remind me to finish these projects before starting anything else ;-)!  Above is a half completed Opari (pattern is by Ysolda) and below is the start of wee Envelope (pattern also by Ysolda).

god daughters and easter

I have the wonder of being a god mother to two beautiful god daughters; here's one of them wearing some fairie wings I made for her, who doesn't want to be a fairie when they're seven!

I get slightly uncomfortable around this time of year, with Easter being such a celebrated time within the 'church'; as a god mother I feel I should somehow be contributing to my god daughters spiritual well being.  However, belief in anything at all should be their choice and not something I should discourage or equally foster upon them.  Last easter, after reading this article about the life and work of the Finnish artist and author Tove Jansson, I gave my god daughters Moomin Troll books.  

Tove Jansson image source: http://en.wikipedia.org/wiki/Tove_Jansson

In the world that Tove created in her books, the Moomin trolls live very closely to nature and embrace diversity; I think this quote from Frank Cottrell Boyce 'one of the things I really took from them was the importance of small pleasures, that life is really worth living if we're just nice to each other and make really good coffee, and the pancakes are just right - then nothing else really matters in any substantial way' perfectly sums up the Moomins and I hope my god daughters picked up on that.

This year, I decided to keep things simple and went for the standard easter imagery - bunnies!  I guess with a nod to the coming of spring, after the darkness of winter, that brings longer days and new life that reminds us of the miracle of nature.  I'm not sure if my god daughters will have picked up on that - but hopefully they got the bunny and spring connection!  

The pattern was from Mollie Makes issue 51; I added a scarf as it's still quite cold and frosty up here in the mornings!  I changed the pattern a bit for the second bunny and used a woven wool fabric instead of felt, both had Liberty Tana Lawn for their ears and tummies.