Jenny, Author at Jenny May

Happy Christmas – we are beyond Fuzzy Felt

I shall be brief, partly because I have a gammon joint in the oven that needs attending to, partly because I don’t want to end up a blubbering mess but mostly because – who wants to read long ramblings on Christmas eve.

For those who have been reading my blogs over the last twelve months, you will know it has been a, let’s say, interesting (heavily on the italics) year. Without going all melodramatic on you, after being diagnosed with cancer there were a few (not many) but a couple of moments I wondered whether I would even make it to Christmas.

I certainly never envisioned that just getting to the age of 36 would seem like a triumphant win but on my birthday in November, I suddenly felt overwhelmed with a strange relief that I had done so.

Christmas for me this year is perhaps the most poignant yet. MOTH and I always used it as a kind of target, a pinpoint time where the worst would be over and I would even have some hair again. I mentioned in a previous blog that I could perhaps adorn myself with Christmas themed Fuzzy Felt, but I am happy to report things have gone beyond the Velcro fuzz. Instead I have a strange mop of unruly curls; long enough to curl up, but not yet long enough to curl back down. One of my sisters suggested placing one of the Christmas robins in it that normally sits on the tree; who knows, if enough gin flows…

But this blog wasn’t really meant to be about me. Instead, I wanted to say, what feels like a hugely inadequate thank you.

I want to thank the amazing doctors, nurses, surgeons and physios at Ipswich Hospital who were all wonderful without exception throughout my treatment. I want to thank my herbalist who makes me feel that everything and anything is possible. I would like to thank all of you who have contacted me with good wishes from far and wide.

But mostly, I want to thank my band of angels here on earth. Despite it being the most horrendous year, I somehow feel more blessed than I ever have before and it is because of the amazing people who have supported me.

I won’t name them individually, I hope you know who you are. You are my life savers, my laughter makers, my hugs and my cuddles, my listening ears and shoulders to cry on and my drill sergeants to buck me up when I needed it.

My darling family, I feel closer to you than ever and I cherish you all. My amazing friends, you have kept me feeling normal by talking to me about all life, not just cancer. My archangel MOTH, who has been with me for every appointment, treatment, side effect and beyond, with patience and love – you are awesome!

Despite all that has happened this year, I have laughed and loved so much because of you all and thank you will never be enough, even if I said it to the stars and back. I wish you all the happiest Christmas and an amazing year ahead.

The Seasons’ Crowns

The Queen of the seasons had four children, as all the queens of the seasons before her had. She had two boys and two girls and as they grew into maturity they would be bound to rule a quarter of the year each, in turn. They were carefree children and played happily together in their younger years with the strong bond of siblings before they have any responsibilities placed upon them. But as they grew and adulthood beckoned, changes started to show in each child and a distance between them began to grow.

The Queen, knowing that this was the natural and inevitable course of life watched them with both pride and sadness. She too had once been close to her brothers and sisters and remembered still the years of unadulterated play before they were called to their respective duties. The time of transition was filled with both excitement at the beginning of their own destinies, but also sorrow for the loss of such close friendship.

Her youngest son would herald Spring. He was tall and lean with pale hair and an exuberance of energy that would excite sleeping plants to wake and bring fourth new life in flora and fauna alike. His job would be to reignite the world into action, shaking off heavy lids and to raise the siren that the harder months had passed and there was much work to be done.

Her elder son would harness Autumn. He was a strong and sturdy young man with dark auburn hair and darker brown eyes. His job would be to guide the world back into sleep after providing hearty meals of rainbow bright foods from the earth. Decorating the world with golden and ruby colours he would lend the living a sense of comfort before their slumber.

Her youngest daughter would court summer. She was wholesome and strong with straw blond hair, rose in her cheeks and freckles upon her nose. Her job would be to dance with the beauty of all things in the flushed prime of their lives. She would sing with the birds returned from far away climes and bestow gentle sun kisses on the warm air.

Her elder daughter would tend winter. She was petite and pale with jet black hair and eyes to match; beautiful and yet somehow ethereal and untouchable. Her job would be to bring the order that is needed by allowing the passing of the living. Her hands would bring the snow where she waved. Ice would form on the breath from her lips and plants and animals alike would bend low to her gaze and die in the fullness of life’s tale.

The first year of succession passed without trouble as the young apprentices learned under the tutelage of their predecessors. There followed two more years where the world did not notice that the heraldic leaders of the seasons had changed hands and the new dynasty were at the helm. But on the third year of rule by themselves, and another year following, the Queen became aware that something was wrong.

She felt it first, a disturbance in the natural order and when she looked she found that instead of clean and clear distinction between the courts of her children, there was confusion and a bickering had set in amongst them. Then came rumours and overheard bits of gossip and complaint around the kingdom. A courtier was heard to say no-one knew any longer when to plant their crops, that bees had been seen at the turning of the year and birds that should have flown to faraway places, had stayed behind. All living things no longer knew what they should be doing. At last, when in earshot of a particularly fierce argument between her children, the Queen decided she would have to intervene.

She heard Spring shout, “How am I supposed to wake the dormant from sleep, if they have never taken to their beds?”

She heard Autumn shout back, “How am I to tuck them in, if there is nothing to hide them from?”

Summer, never one to raise her voice but perfectly able to be petulant, said, “Well, it’s not my fault. I can’t help it if everyone falls in love with me and so does not heed these changes.”

The Queen waited to hear what her daughter, Winter would say, but her voice was not amongst the cacophony. Leaving the warmer seasons to clash and collide and push the boundaries of each other as far as they dared, she stole away and eventually found her eldest daughter alone and sat amongst the dark green and bright red of a holly tree. Lifting her down and brushing away ice crystals from her cheeks from tears that had fallen and frozen in an instant she asked, “Darling girl, why do you cry? And why are you absent from your siblings?”

Winter threw her arms around her mother and feeling the warmth from another being sobbed until her crying held no more power and she could speak.

“I am hated. I don’t want to rule with fear and yet this is what I bring. Death, decay, endings: this is what I give to the land. People set fires to keep me away; they send prayers for my speedy passing. What good am I, that brings nothing but sadness? My brother Spring brings life and promise. My brother Autumn, gives sustenance and respite. My sister Summer is the most loved of all; beautiful and strong, people cling to her and call for her to stay. People speak my name in whispers as if they can ward off my calling. I am not wanted.”

The Queen’s heart was filled with love and sadness for her eldest daughter and she held her tight before kissing the top of her head. She sat them down, side by side and brushing back the raven black hair from Winter’s eyes she spoke softly and with warmth to her child.

“Yes, your brothers and sister are wanted and they bring to people the things they acknowledge as joyous. But you, my darling girl, you are needed and that is far stronger than desire. You carry the heaviest burden because you carry life. You may think that with your presence you bring endings, but without you, there can be nothing new. A story must always finish or the characters will be left in limbo. The sun must set or the creatures of the night would never have their time. So it is, that the year must end to leave an empty womb for life to begin again. But you bring beauty also for who has not marvelled at a frosted spider’s web or the golden shimmer of sparkling sun on a fresh blanket of snow? The piercing blue skies you paint are as immense as the oceans of the world. You must have faith in yourself and what you can give. You undertake your duties with kindness and a gentleness and do what needs to be done, whether people realise this is what they need or not. They may look upon your siblings with outward favour, but what would those three be without you? They would be lost. We each have a different crown to wear, wear yours with heart knowing you are the only person, who can be you.

That year saw the hardest winter spoken of for generations and the people swore and moaned and longed for its passing. But what followed was a year of unheard of abundance: trees were laden with fruit, farmers cut the biggest yields, honey flowed from hives and life roamed the fertile land. The people praised Spring, Summer and Autumn for the multitude of gifts they brought fourth but did not think at all of the fresh canvas that was given to them by winter. But the Queen thought of her eldest daughter and with pride and gratitude held her hand as they waited for her time to come round again.

Words

From my mind to my tongue

The words will not come.

From my heart to my fingers

The syllables linger

They fly and taunt as they bend and scatter

I grasp for the sounds that I can’t capture

And I stop. Because they matter.

And I don’t want to get this wrong.

So I try again

I take a breath and begin.

But the sounds they swell at the back of my mouth

Choking my speech

Nothing comes out

I’ve got so much to say but I start to back down

I. Just. Can’t. Find. The words.

And it hurts.

So I immerse in the verse that takes me away

Feeling the words that replicate my pain

His lips spill forth the things I can’t say

Let him speak my hurt because I have no refrain

There’s too much in my head to order into ink

There are thoughts that I feel but I don’t know how to think

Declarations get stuck.

Questions won’t come.

Like trying to describe the remnants of a dream

It makes sense in my head but it’s a mess when I speak

So I let him talk my heart

Let him voice the words that will not part

From my lips

And knowing this

I let them flow from his.

He talks my hurt.

He says my words

And I hope that through my mute appeal

You understand that what he is saying

-I feel.

From my head to my lips

My words stumble and trip

Fear shuts down the sounds in my mouth

That push against my static tongue –

They press hard but won’t come out

I want you to hear all the things that I feel

But nothing comes out and so I steal

His lines

His rhymes

His voice, his words, his song, his beat

They are his but its everything I want to speak

But my sentences break and remain undone.

The words get stuck from my mind to my tongue.

Folk Tales

Over the last week or so I have begun to start taking small walks as part of my recovery after cancer. I can’t go far as my body is not capable of much yet, so I am starting small with short trips out close by. I am fortunate, in that I live in rural Suffolk and it is within mere moments of stepping out of my front door that I can be in the countryside.

As I take my small ambles, I find that I am drawn to the sights and sounds around and they stir within me the inner folkie. I have mentioned, in previous blogs, that I am indeed of folk stock; both my parents and grandparents being from the folk world. I may not have been an ‘active folkie’ for a while, but like all things that are in the blood, it never really leaves you.

Nature and folk are inextricably linked, there is nothing that separates them, intertwined as they are. It is easy to understand how fables and cautionary tales were created from the land with the multitudes of sounds, sights and elements that form from nature and all of which would have dictated how you lived your life years ago, before modern science, cynicism and technology provided factual answers.

On some of the folk camps I went to, there would sometimes be a midnight expedition set upon by some of the youth. A route would be scouted out during the day by one or two of the older young-ones, then later, well after dark, they would lead the rest over fields, through woods, through sleeping villages and sometimes down to the coast all without torches, street lights or indeed, mobile phones (yes, no mobile phones then). If you have ever been out in the dead of night, in the middle of nowhere with no false illumination but only what the stars and moon provide, then you will understand how small noises can become wild animals, shapes not quite made out in the gloom will loom as lost figures and the merest touch of an over-hanging branch can become the land coming to personified life.

As a writer of stories, poems and songs, I know I have had a lot of influence from folklore and wobbling about on my short trails I can’t help but conjure up tales from the things I see.

On one of my short routes nearby I always pass a view of two tall trees standing close together and they inspired the following folk-style tale…

Two Brothers

The land has forever been divided, fought for, won and lost and in a never-ending variety of ways. Battles have raged, feuds nurtured for centuries; lives and loves lost both on and for the ground.

Many years ago, before metal monsters chewed and turned the earth, spitting out great plumes of dusty crops, a family; generations long in farming, tended their land. Their living was hard won by constant care and year after year their crops grew and they prospered. They did so well, in fact, that they became well known in their county and were soon seen as a family of standing.

The head of the family was growing old. He had worked on the land all his life and had endured earlier times when they were not so prosperous and remembered well that you could only reap what you had sown. He had been part of a large family, being the eldest of seven siblings and, as was tradition with the oldest boy, he had been brought up in the knowledge that it would be his responsibility to take on the farm when his father passed away.

Now that he was nearing the end of his life he had decision to make. For you see, he did not have an eldest son of his own, but two. A rare occurrence of twin boys had been a gift to him from the gods and until this point had served him well. It was perhaps part of the reason the farm had prospered so; having twice the help. But there was a problem; his sons were both excellent workers, intelligent in the ways of the business and both wanted success – but they bickered so. Under his instruction, they toiled and tamed the land, but it was in competition against each other, he had begun to realise. They would not work together for a common goal but would work a full day and night without sleep if it meant besting the other.

The old man feared what would happen to the farm after he died if his sons were to carry on in such fierce competition. He called them to him, one winter afternoon and instructed them to sit and listen.

“My boys,” he said, “as you know I am getting on in years now and I have to think about the future of this farm; the prosperity of which will support you and your younger siblings in years to come. My father handed the land down to me, being his eldest, but as you two are equal in age – for me nor your mother can rightly remember which one of you appeared first – I have not such an easy decision.

“I feel my time is approaching that I must say goodbye to this world, and grateful for it I will be, all told. I have had a good time, but a hard time and the world is changing faster than I can keep up and I am tired. There is just one thing that will keep me from peaceful rest and that is the continued bickering of the pair of you.

“I have decided that until the year comes fully round again, I shall hand the running of the farm to the pair of you and at the end of that time a decision shall be made.

“If you have proved that you can work together for the good of everyone, I shall gladly leave the whole to both of you. But if you bicker and fight and contest each other along the way, I shall have to think again, who will inherit the land.”

And so it was that the old man let go his part in the running of the business from the following day and settled back to watch his sons and hope that they would find the path to working together.

Winter went well, for the talking to that they received from their father, worked its magic for a short while. Despite the cold and frost there is still much to do on a farm and the hostile weather lent a lack of social events to distract them. But as Spring was on its way out and summer in full swing the news got around that the two young men were in line to inherit a quite substantial amount of land, and interest from families nearby, who had daughters ripe at the age of marrying, began to send for them to attend events away from the farm.

In short, the twins were wooed by society. They were wined, and dined and escorted to summer fayres and entertainments by the parents of young ladies with an interest in the land.

The old man watched from afar, determined to leave the full year to turn to truly see the result of his proposition. As the summer weeks passed into autumn, he grew sadder and sadder for he could see the land suffer from neglect as his two sons were distracted by parties and gaieties. He became ill and eventually it was clear that his time had come upon him sooner than he had thought.

On a particularly fine autumnal day, when the world was filled with fiery colours and the smells of wet earth and distant smoke were warm on a gentle breeze, the old man took himself slowly, on unsteady feet to a nearby copse. There was a spot in the centre where he had often come to rest his eyes and feel the land around him breathe and it was to this place he went to seek solace. Sitting on the rough bark of a fallen tree he tilted his face to the sun and tears fell down his cheeks.

After some time, he became aware of a presence beside him and turning to look he was faced, through bleary and old eyes, with what appeared to be a person; thin and pale and somehow giving the air of translucence. The old man looked into dark green eyes and felt a peace he hadn’t known for years. There was a familiarity to this being, despite having never met before, it was the same feeling he had when his hands were in the earth or coppicing the willow. He asked, “who are you?” and the creature spoke:

“You have a good soul, old man. You care for the land and all that live in and on it. I can feel the love you have for all that lives here. I am part of the land. I am the energy that flows through sap and up stalk. I am in the ground from which life grows and in the warmth of new leaves in spring. I am strong, because you cared. Why do you cry?”

The old man told the creature of his pain that his two sons would not get on and tend the farm as he and all those before him had done. He spoke of how they quarrelled so and how they bicker and compete, all the time not realising how much they could do if they put aside their differences.

He said, “I wish they could stand together and look to this land side by side and see the life it holds and can give.”

He sighed and closed his eyes and when they opened again, the creature had gone. “I am an old, mad fool,” he muttered to himself and went home to die.

The two elder sons made a handsome figure at his funeral and from that moment on were courted harder than ever before but when harvest came upon them they had a sharp awakening from their social whirl. It fell to a poor, unlucky farmhand to deliver the news to the them one morning that their crops had failed. It was such a poor and meagre harvest that it would not see them through the winter, let alone have anything left to make profit at the market. The brothers would not hear of this and demanded to be shown the bare fields.

For the first time in many months they swapped their fine shoes for their tough boots and were led out into the fields. Their feet, unused to their work footwear began to rub and sore and the pain of the blisters forming made them angrier than when they had set off. Having shown them to where there was just the smallest harvest, the farm hand left the two men bickering and shouting; each determined to hold the other accountable.

They stood facing each other, fury making them stamp their feet hard into the bare earth and the pain from the newly formed blisters made them kick off their neglected work boots. As each bare foot was stamped down in anger it planted solidly, fixed to the ground. Their toes began to stretch and elongate burrowing further into the earth until both men were rooted to the spot. Their limbs darkened and roughened, cracking like bark; their mouths stuck agape mid-shout, became knots and from their hair and finger tips grew small branches. Nearby a pale figure watched.

The two brothers stood side by side for the rest of their lives. They grew into mighty trees and stood looking over the land that was once theirs. They watched as, unattended by them, it was divided up further and passed on through families no longer theirs. They grew bent old backs and creaked in the wind, but still, side by side they stood and saw the changes with the march of time. Great mechanised monsters made from metal and with dirty smoking black fumes began to criss-cross the ground and chew into the earth at what seemed lightning speed. The two brothers stood side by side as settlements expanded colonising the fields that their father had so lovingly tended. Side by side they stood, branches overlapping now as if they held each other in wooden arms and they watched as men approached with whirring toothed metal animals that bit into their bark flesh – and side by side they fell.

My first novel and me

A long, long time ago, in what feels like a universe far, far away – I wrote a book. A very silly book full of mishap and mayhem. And then I did nothing with it for many years. Now, I’m going to tell you a bit about how it came about, why it was ignored for so long and perhaps most pertinently – how you can now buy it.

It all originated from some mould in a high school locker which my best friend and I shared in sixth form. There were not enough for each child to have one each so sharing was the done thing, having been best friends since the age of seven, there was no one better to locker bunk with. (For some reason, we all put padlocks on our lockers which was rather senseless seeing as they were often able to be opened by the hinge side anyway, being old and decrepit.)

Over one holiday, one of us managed to leave a drink in the locker and on our return, it was sporting some rather wonderful mould; which we named Norbert. Although, having absolutely nothing to do with and no resemblance to mould of any kind, the name spurred something in me and a character was born: Norbert Melvin. Norbert Melvin, with his shock of brilliant white hair and ever present pipe, is one half of the Intrepid Explorers of Hidden Spaces and Small Back Gardens. The pair are detectives, of a sort, who travel portals, undertaking missions to help those who have had no luck from the usual authorities

The other half of the pair is Jalo Strorn: a flamboyant man with a huge head of dark curls and incredibly hipster shirts. The name Jalo Strorn was one already in use, believe it or not; it was the name my best friend and I used to joint enter competitions and such, being a portmanteau of both of our names at the time.

You may now be getting some idea of the slightly unusual nature of the friendship of my best friend and I. We were never the cool kids as demonstrated by the fact that, on our lunch breaks, it was not unknown for us to make ourselves a fried egg sandwich and peruse the thesaurus and this is how further character names were derived. On one particularly amusing amble through the thesaurus we came across four words/names that we thought sounded like a firm of solicitors: Pharcy, Glanders, Sweeney and Spavin: for some reason, all these became characters looming larger than life in my head – and the book was born. So, I wrote a chapter or two and then completely ignored it for many, many, many years. Why? Because life takes over: work, mortgage, work, play, being in a band, work etc.

It wasn’t until another friend of mine was writing a novel of his own (hello Andrew) that I thought about picking up where I left off and seeing where it got me. I began writing on my lunchbreaks in cafes and the library and Andrew and I started sharing chapters of our books as we went along- something which spurred me on considerably.

It was an odd moment when I finished (well, finished the first draft which is quite a different thing altogether). I was on my own. My partner at the time was away on a lads’ holiday. I was sat at the kitchen table, wrote the words ‘The End?’ and silence. There was no one to hug or tell. So, I made myself a stir fry and opened a bottle of wine.

The next day I was planning to tell my work colleagues and buy cakes by way of celebration but my news was eclipsed and overrun by a girl I worked with announcing she was pregnant. Somehow it didn’t seem right to shoe-horn my news in. Then, once more, I did nothing with the book for years because again, life took over: divorce, six house moves in as many years and getting my life back on track.

Now, blissfully happy with my darling husband (and having put everything on hold once more as I got through cancer diagnosis and treatment) the book is finally available to buy.

As I mentioned at the beginning, it is a ridiculous book. I think of it as fantasy-mild (there is portal travel and all manner of strange gadgets, but I have not totally geeked out), slap-stick on a page with adventure, mayhem and humour. But it is character driven. The people in it all have their foibles, eccentricities and strengths. You feel for poor Mr Spavin who is so dour and luckless – if it is going to happen – it will most likely happen to him. Jalo Strorn and Norbert Melvin are suave and self-assured – a little old-school spy style. And there is a rugged but evil villain of the story.

The book is complete nonsense but, there is some truth in it. There are things I have put in there which actually happened to me or are memories of mine or someone else’s. I will write further about these things another time.

So, what next? Well, I have another book, ‘Geek Club’, half written following Jalo Strorn and Norbert Melvin on a new adventure. I must get on with this one quickly as I have three other novels planned – this time in quite different genres which I am looking forward to writing. ‘The Unusual Disappearance of Mr Spavin’ and ‘Geek Club’ are a fun release of the silly side of life that I enjoy – let’s face it, we all need some silly escapism at times. The next books though will be something rather different. But until then, and at a time when the world seems like it needs a lift, the silliness will continue.

Buy ‘The Unusual Disappearance of Mr Spavin’ as paperback or on Kindle here.

Taking Control

There is nothing like being given the diagnosis of having cancer to make you feel that you have absolutely no control over things. There you are, pootling along with normal life and suddenly, without warning your world is turned upside down. I have spoken before about the whirlwind of appointments and treatment that steers you along whether you feel up to speed with what’s happening or not and this is a good thing in a way because things need to be done and at this stage, you are most certainly not in much of a position to make decisions. But, all this can leave you feeling rather helpless and that this big, nasty thing is being done to you. I found that one of the things that made me feel more positive, was to take control where I could.

The first thing I did was to cut my hair short ready for the impending hair loss. It felt like a defiant moment of, ‘well, if it’s going to go, it will go on my terms.’ Okay, so it was horrible when it fell out, but I still believe it would have been worse if I had not taken my own steps beforehand.

I then had a fun/not fun shopping spree for various things I had read about other people amassing to help lessen symptoms and side effects. This accumulation included such items as: hand sanitizer gel, mints, travel bands, lip balm, vinyl gloves, ginger biscuits, skin oil, Milton and a baby brush – which I am using now as my hair grows back. I bought hats and scarves, cotton rich clothing and many other things: most of which did indeed prove useful, a few of which perhaps not so – but the main thing was, I felt like I was preparing and by doing so was tackling things head on.

Knowing that my body was about to take a severe beating from all the drugs, I went to see an herbalist for some gentle natural help to support my poor organs through the process. This made me feel I was doing something kind for my body and whether other people believe in it or not, I truly think it helped me immensely. Yes, I had all sorts of horrible things happen because of the chemo, but I didn’t get any infections or other illnesses on top of it all and my recovery has been good.

On the subject of drugs: I made myself a pretty bag to keep all my medications in; perhaps an odd thing to do, but it meant I could hide all the nasty stuff away inside something pretty – which felt nicer. Speaking of bags; MOTH and I have Cancer Bag, something people have either been shocked or laughed at hearing us say, but it was a bag put aside for all the cancer related paperwork (and my word, you end up with a lot). I wanted to do this so ‘cancer’ did not encroach, hanging around in visual reminder throughout the house. It was all put away ready to grab and go for each appointment.

The last thing I did before treatment started, was to dedicate a space to be my recovery room for the days I couldn’t be up and about much. I very specifically did not want to just stay in my bed and I certainly did not want to call it a ‘sickroom.’ I made sure it was comfortable and clean with all the things I might want or need and as such, it became a place of recuperation and recovery.

As treatment went on; from chemo to surgery, new things came up for which I felt the need to take charge of. Because of having my nerves blasted with poison, I have peripheral neuropathy leaving me with pains in my feet, knees and legs which makes walking difficult and painful at times; add to this loss of balance some days, shuffling about can be rather difficult. BUT, there was no way I was going to start just lying on the sofa so – I bought walking sticks. Yes, I am 35 and have walking sticks and I don’t care. (I thought I had ordered sleek black ones but when they arrived they were dazzling with a silver sparkling pattern – not exactly my cup of tea: they are now referred to as my ‘bling bling go-faster sticks.) They have been a means for me to get out when otherwise I couldn’t – a tool that gave me ability to still go for a wander or mooch around the shops and so, odd as it feels, they are great. In a similar vein, I have old lady shoes – comfortable and with Velcro straps because there were times I couldn’t manipulate fastenings because of the pain in my fingers. Velcro shoes and walking sticks – hot to trot!

After my surgery, I had two drains stitched into me. These were very long tubes with bottles on the end which drew out lymphatic fluid and blood from around my wound areas. What a pain they were! It was completely ridiculous and annoying to have to carry around two large bottles with long flopping tubes 24 hours a day for eight days. I was sent home from the hospital with each bottle in a bag that hung precariously from each shoulder and fell off at the slightest movement. After a few days, I started carrying them in a small hessian bag – a slight improvement but still meant I always had one hand I couldn’t use. So, I made myself panniers which I wore round my waist and left me ‘hands free.’

All these things I did because I needed to feel I had some control over the situation. It was a way of coping and feeling less of ‘a victim – whereby stuff happens to them,’ than a person who was proactively dealing with a situation. But here’s the biggy and the thing I have been learning and expanding upon as time goes on – the best thing to take control of is the mind.

From the start, I knew I didn’t want to be passive to the cancer. I was angry, which helped and my aim was (as my best friend and I have constantly said) to kick cancer’s arse. Of course, I have had days where things have been too overwhelming to not give in to a big cry and a feeling of ‘this just feels too much.’ I always made sure though, that I didn’t let these times last for long. I couldn’t afford to be down, I needed all my energy to go in to getting better. This is hard work. It is full-time work. Being ‘up’ and positive can, at times, be difficult but I truly believe, worth it. I don’t think I’ve said ‘why me’ at any point; I know I’ve said ‘oh, for £*@%’s sake’ and ‘%^$* and perhaps at times ^&!*^^£@&$^@^^&$@^$@^*$^@&^$*&@^$^***@^& but I couldn’t give in to feeling ‘done to’ rather than ‘dealing with.’

I am learning that we all say the right words: ‘we must slow down,’ ‘life is for living,’ ‘don’t hold on to grudges’ etcetera, but saying them and really feeling and doing them are different things. I have been blessed with the impetus for a new outlook on dealing with life. Old habits are hard to kick, but bit by bit, with meditation, affirmation and a whole lot of stubbornness, I am learning to take control of my life through a positive mind and it is oddly liberating. This is my new beginning.

My homemade hip panniers to carry the surgical drains

Shadows

Shadows

Our sepia selves

Anchored by the soles of our feet to our own suspended reflections.

A strange world where I, for once, am taller than you

Or we stand as giants and hand in hand over land we loom.

Like fun-fair mirror glass

The sun makes fun with us

Pulling our bodies out of shape

Stretching limbs to elongate.

Dappled dates are documented with a camera click

Our edges blur as the light plays tricks.

On lazy hazy days or when the clouds demand the skies

Our dusky doubles disappear and hide.

But when the sun reclaims her place and tells us so

By touching gold on all below

We see the dark creep at our toes

And welcome back ourselves

Our shadows.

Feeling hot, HOT, HOTTER

Warning, this blog contains sweat!

Current status: sweating my eyebrows off – literally. Seeing as they are now 95% make-up rather than hair and that the weather has turned rather warm, it is not, unfortunately, an unusual occurrence to find that they have slipped or been smudged somewhere across my face.

Summer, it seems, has arrived (well, intermittently) and whilst most are probably enjoying downsizing clothes to shorts, t-shirts and the such, I am covering up.

It is a strange and contradictory time having chemotherapy during the summer months. I am experiencing hot flushes on a scale like you wouldn’t believe caused by two factors: firstly, the chemo drugs themselves can induce this reaction, secondly, I have been having a hormonal implant injected to help protect my ovaries through the process and this causes menopause-like symptoms. Between these two things and the hotter weather I have sweated more than I thought was humanly possible. (I never said my blogs would be pleasant, did I?) For the first week after having the FEC chemo drug, I literally soak through clothing 24-hours a day and it is not unusual to find me sitting head-on to a fan with a bright red face. (MOTH and I have started calling these times my Ribena berry moments, for that is what I look like.) But despite all this excess heat I am also doing some things that may then seem a little bizarre.

As mentioned before, I am generally wearing more clothing now than I was months ago and that is because I must be super careful of the sun. Many of the chemotherapy drugs are radio-sensitizers which means that they make the effects of the sun’s rays more powerful than they would be normally. Chemo drugs stay in the body for up to two months after treatment and, if going on to have radiotherapy afterwards (as I may be when chemo has finished and I’ve had my surgery), you will still be super sensitive due to radiation recall. This is where the radiotherapy treatment leaves not only the affected area being treated more sensitive but also the skin on other parts of the body too. So, for me it is head-to-toe covering: hats, collars turned up, long sleeves, full-length trousers, factor 50 greased all over (and my word, does that stuff not rub in. With my pale bald head and the white sun cream I am looking rather albino these days) and staying in the shade. I said to a friend it might be easier if I just put a sheet over my head and cut out two holes for eyes but I feel a ghostly apparition meandering around the garden may cause some disturbance to the neighbours.

I have not yet had the nerve to go out in public with my head completely uncovered and yet hats, scarves and wigs are becoming uncomfortably hot.

Another thing you must be very careful about is infection. Having an obliterated immune system from the chemo you soon get a heightened awareness and wariness of everything you touch. I love to garden. It is my therapy, the saviour of my sanity and I was most put out when the oncologist said I shouldn’t really be doing it. So, I’ve ignored them – I truly believe that something which helps you significantly to stay positive must be good for you. But, I am being careful and so, when I do head out into the garden I am not only taking it gently and doing small bits for short times, but I make sure I am completely covered, including snood over mouth if venturing to anything dusty and I wear rubber gloves under my gardening gloves. Once again – sweat levels are on high and as for what I must look like…!

It is G&T time of the year, or Pimms if you’re that way inclined, but, of course, not for me whilst pumped to the gills with chemo drugs – hrumph! Instead I am trying to drink as many herbal teas as possible along-side copious amounts of water. For the relief of nausea; peppermint, ginger, green, fennel and camomile tea are all recommended but I must say it is not particularly with enthusiasm that I sip a cup of the hot stuff when sweltering and dreaming of gin.

I have also been soaking my hands and feet in warm water. Mad you say? In this weather? Well, yes, it does feel so and yet there is a good reason why. Firstly, my poor feet are suffering – they are sore and peeling like mad and so I am trying to treat them nicely. I was given a wonderful foot moisturiser and both my feet and I are very grateful for it and I slather it on after a soak in coconut oil and rosemary. The reason I am soaking my hands (once again, warm water and coconut oil – very softening) is so I can timidly and gently cut my nails. One of the side-effects that can happen as a result of the TAX drug (which I had three rounds of first) is your nail beds dying. This is extremely painful and has left me at times unable to do anything because even the slightest touch to my fingers is excruciating. I had a very sorry moment for myself where I couldn’t even break off a piece of chocolate as it was too painful to do so – this made me cry – so I ate more chocolate but only once MOTH had broken it up for me. Added to this fun is that the nails start to lift and so perhaps you can understand why it is with extreme caution and care that nail cutting is undertaken and only after softening them.

Every three weeks, when I head into my chemo, I don gloves and hand warmers – imagine that, in this weather. I do this because I have very cold hands and un-co-operative veins; the silly things just will not accept cannulas. Keeping my hands warm allows slightly better access for the needle and I get my arm wrapped in a heat pad whilst there too. The TAX drug is administered by drip and once started went through fine. But the FEC treatment is administered by a series of large syringes. (One of which is bright red, which, if you’ve forgotten about gives you rather a shock when you next go to the bathroom and it comes out the same colour!) The FEC drugs are kept in the fridge and the first time I had them, the coldness of the liquid and the coldness of my hand meant my veins kept trying to constrict and so it became very painful to push the drug in. This meant we had to keep stopping to warm me up before trying again.

So, spare a thought for me when you are in your swimwear, sunbathing and enjoying a nice cold drink for I shall most likely be having a hot tea, in the shade, completely covered and hoping my eyebrows have not mingled too much with the sun-cream and started to head off to another destination.

*MOTH Man Of The House

Working nine to five then back round to nine, on to five again, then to nine…

Having cancer can easily be a full-time job. Of course, you have it all the time, it’s not like a shift rota where you can get every other Friday off, but it really can be more than just passively having the disease. Or at least that’s how I’ve found it.

What I mean is that there is so much to do, take in, know, understand and deal with; there is scarcely time for anything else.

In the beginning, when you are in the first throes of diagnosis you find yourself caught up in a whirlwind where you are no more in control than a leaf tumbling over a waterfall.

In my case, I woke up one morning in February and felt a pain around my right pectoral muscle and thought that I must have slept oddly; perhaps with one arm above my head fending off one, or both, of the cats who cheekily like to sneak in onto our pillows whilst we are asleep and assume the mantle of a feline deerstalker. Rubbing around the area that hurt I felt something that has irrevocably changed me and my life. A lump. A large, solid lump at that.

Feeling utterly scared and doing what we all know is stupid, I tried to ignore it for the day but by the afternoon it was the only thing in my head and eventually I had to ask MOTH for a second opinion. Yes, he agreed, there was definitely something there.

Unfortunately, it was on a Saturday this happened and so I had to wait until Monday to call the doctor. There were no appointments available but when I explained to them why I was calling they fitted me in that morning. God Bless the NHS and all who work in her! The doctor referred me straight away and the next morning I got a call from the hospital with a date to see the specialist – in two weeks’ time. I’m not really complaining, two weeks is nothing compared to how long some people wait, but for me, at that time, it felt like two years.

I saw the consultant surgeon on a Monday; on the same day, she sent me for ultra sound and a mammogram and did a biopsy. On the Friday, we were back for the results. NOTHING will ever prepare you for being told that you have cancer. I heard the consultant’s words, took all the paperwork, even asked some questions – but I don’t know how – the world had turned to slow-motion fog. Back in the car I swore liberally, fully and for some time, then cried all the way home. Almost as bad as hearing the news – I now had to tell my family.

What followed was a full-on, high-paced assault course of appointments: CT scans, bone scans, mammograms, ultra sound, blood tests, consultant appointments injections and eventually beginning chemotherapy and this intense packed ballet continues as my treatment does.

As well as the physical appointments, there is keeping on top of what medications to take and when and what to then take and do to combat the side effects from those. (Side effects will be a whole different blog, or two or five!) I have a bag and a notebook that I keep my medications in otherwise I dare say I wouldn’t have a clue what was meant to be happening.

Then there is just getting through the treatment. My first three rounds of chemotherapy were with the drug known colloquially as TAX (I shan’t go into technicalities here.) Although there were some pretty horrible side effects I found that I only had two days in each cycle that put me to bed. But, last week I was changed to a different drug FEC (well, it’s three in one really, one of which being a derivative of mustard gas!) and I have found this one much harder to deal with. Sick, sick and sick would describe it only by adding a further; sick. On these days, the full-time job really was just to get through each minute, hour and day.

But there is so much more that can be explored to help you get through what is essentially a deliberate poisoning of your body: herbal help, diet, exercise, meditation. I have been compiling mountains of information on the such and my head buzzes with all there is to know and find out. There are not enough hours in the day!

There must be balance though and when you have cancer – life outside the disease still exists. I try and get bits of work done when I can, I do the shopping and cooking when not having a bad day, I see my darling family and friends when it is possible. I have often said that if it weren’t so horrible to go through, the process, from an outside point of view, would be fascinating. The idea that we have chemotherapy to essentially turn off cells (yes, ‘have you tried turning her off and on again,’ applies to humans as well as IT systems) and then they turn back on without the cancer cells doing so is an amazing, albeit scary, process.

I feel that when my treatment is done and I am on the road to full recovery, I will still be learning about all this and I hope that in some way, I will be able to do something to help other’s going through it.

In the meantime, I would like to ask you all to do something: please regularly check yourself. It’s hard to know what you’re looking for, I know; all I can say is, I, and others I have spoken to who have had cancer, all say, when you find it – you just know. So please, check. If you find something, don’t ignore it. Go and get it looked at. I know it is scary but trust me, life really is too precious to not do this for you and your family. A few seconds check in the shower could save you all of the rest of the years of your life – bit of a no-brainer really, isn’t it?

*MOTH Man Of The House

Can’t write the wrongs

I am so bored of cancer right now. This may seem like a strange perspective to take, but honestly, what a waste of time!

I am having a bed day, back with the bone pains from my white blood cell-boosting injections and really I would rather be up and at ‘em than under a duvet.

I’m not very good at doing nothing, it is rare for me to even just sit and watch when the TV is on; often I will be knitting or sewing or something at the same time and so enforced stoppages due to lack of energy, oomph or horrible pain, quite frankly make me annoyed.

It may seem that these times would be an ideal situation in which to get on with some writing – this being what I do, and what a lovely thought and in more lucid moments such as this I will try to; but I am going to tell you about chemo brain.

Chemo brain – sounds like an excuse, something someone has made up to gloss over a moment of silliness but it isn’t.

In fact, out of everything that has been going on, I have found it to be one of the more distressing side effects of the chemotherapy.

Part of what happens is just blankly losing words or the ends of sentences. I can be talking: yabber, yabber, normal flow of espousing and then [ ] nope, there’s nothing at the end of the line. A cliff edge has appeared and there are no words available just a big gaping chasm of nothing. Very annoying.

For me though, I have found difficulties in reading and writing worse. As someone who has lived their entire life reading avidly and writing to the point where I own more notebooks than is probably reasonable (I am a self-confessed stationery lover – nothing pleases me quite so much as a lovely new notebook and pen or pencil), it has been quite distressing to find I have days where I just can’t do it. I can be reading and it occurs to me that something isn’t right. I’ll read it again. Nope, still not correct – but why or how? I can’t make it out. Letters, numbers, symbols, they are there but can I unjumble them to make sense? No.

The same happens with writing. There I am either scribbling with pen or tapping away on my keyboard, thinking I am putting down what is in my head but what comes out can be completely different. Again, I look at it – something is wrong, but as to what and how to put it right, I can’t decipher.

This is indeed a big reason I find myself bored and grumpy with cancer: when I am physically a bit too depleted to do much, how unreasonable that I can’t sit quietly and read and write either. Hrumph!

Chemo brain manifests in other ways too, especially in forgetfulness and the inability to concentrate. I currently live my life by lists, lists, and lists, a few more lists, notebooks, calendars and journals. This is not just an excuse for another notebook (although I have nearly finished a couple, perhaps it is time for a new one…) The first problem is remembering to put something on the list and then to look at it. When I bring home my mountainous bag of medicines after each chemo treatment I write down exactly what I must take on what day, when and how many otherwise who knows what would happen. I am very lucky in that MOTH has taken on delivery and logistics of my cancer and has a far better idea of what’s going on than I do.

There are many other ways in which the brain gets affected by chemotherapy. My eyesight is shocking now and I struggle to read things even with my glasses on some days. My spatial awareness (never the best anyway) is dreadful and I have to admit I have only driven once since starting chemo and I felt so hyper aware of not really being confident of anything around me that I’m not sure how safe I was to do so. There is unbalance and wobbliness and the clumsies too – I am forever dropping and knocking things, bashing myself onto any available surface and I think MOTH has been somewhat wary at times when I’ve been cooking meals and wielding a knife.

There are many other ways in which chemotherapy disrupts and rattles the brain but I think you perhaps get the idea.

The flip side to all this is: when you have enforced time where you have to do nothing it can open up new thoughts and processes. When you can’t do much, you pay attention more to what there is. I have had a billion new ideas of things I want to do and try (ok, I can’t do them right now, but they will be there when I can). You have to take life slower and end up paying closer attention to things and I have found that by doing so, you can start to see the things that really, really are important. Yes, I haven’t been able to clean the bathroom, do the ironing or get around to exercising (although I have managed to avoid that one for a lot longer than the cancer!) but I have noticed and felt things in more detail than ever and I am learning patience (not my forte as MOTH with tell you) and the ability to not stress so, for example when running late or not getting something quite right. Perhaps I will become a serene and laid back kind of person at the end of it all, or maybe I will be full on rushing to do all the things I want to do now but can’t. I don’t know, but I do know that life doesn’t stop just because you are having a bed day.

When you can’t find the word you need, let it go, one will come eventually – it might even be a better one. When you can’t physically get up and garden, visualise and meditate on your ideal outside space and use that time to calm and focus yourself inside.

When things are not as you want, do what you can at the time.

(You may have guessed that I have had to employ the use of both spell-check and MOTH to make my blogs readable in any discernible sense. Before doing so on this blog here are some words I wrote and could not make sense of or why they weren’t right: notesbooks (could I see the extra ‘s’? No.) unbalabce (I couldn’t figure out at all for a long time if any of these letters were right) kocking (kept wondering why I was talking about cooking until eventually realised it was meant to be knocking.)

*MOTH Man Of The House