The last time I posted here was nearly three years ago, yet every week I see that there are people reading this blog. This past week was Sarcoma Awareness Week, but every week should be Sarcoma Awareness Week. This is my story and this is what I'm going to do to raise money.

I was diagnosed with Ewing's Sarcoma five years. Today I am the healthiest I have ever been; I have a new, wonderful career writing psychological thrillers and every day I give thanks that I am alive and mobile. It would be naive to say all is wonderful because I do suffer pain in my leg and sometimes it is unbearable. But I have learned to live with it. Now when my leg screams at me I don't go into an immediate panic thinking the sarcoma has come back. Instead I try to work out what has triggered the pain. Normally it's stress and the weather. I have tried every cocktail of conventional medicine and unconventional therapies. Personally, I like a mixture of both.

I know I am so incredibly lucky. When I was going through treatment, I joined a small group of other women with different types of cancer, who came together online for support. Of the six of us, only two of us are still alive. Every time I hear of someone passing from cancer, it sends shockwaves through me. Even if I have never met that person. 

I have been mulling over what I can do to support Sarcoma research and I'm going to try to raise money by giving someone the opportunity to name a character in my next stand-alone psychological thriller novel. They can choose a goodie or a baddie! It is not necessary to donate in order to enter the raffle, but I am hoping that people will. For every person who donates, I will match their donation. Yes, this could cost me a lot of money. I really hope it does because it is worth every penny.

I will select a winner via a random generator app on 21st August which was the day I was diagnosed five years ago.

Go to:  https://www.justgiving.com/fundraising/mirandarijksauthor  to donate. 

If you would like to enter without donating, go to https://www.instagram.com/mirandarijksauthor/  or  https://www.facebook.com/MirandaRijksAuthor  

I debated long and hard whether to write this post because in some ways this isn't my story to tell. On the other hand, everything in my life that has occurred has been tinged in some way by what happened on 5th October 1991. I know there are many other people who feel the same way.

My best friend Ros was killed in a car accident. She, and her boyfriend who also died, were 24. It happened a mile from my parent's home.

She was going to be the maid of honour at my wedding. I was going to be hers. We plotted our futures from the age of four, scribbling in each other’s exercise books at primary school, giggling all night long on sleepovers. We went to the same senior school – boarding, where we were cruelly put into different houses in the antiquated, ill-advised belief it was better to split up friends. I was miserable, she less so. She smuggled ‘happy notes’ into my schoolbag, calling me Miri or Adnarim (Miranda backwards), drawing little smiley faces to cheer me up. During sixth form and university, we went our separate ways, but back in London having both studied Law at different institutions, we shared a flat. I was working, she was completing her pupillage.

The 5th October 1991 was a Saturday and I got up early to drive to Mulberry’s factory shop just outside Bath with a girlfriend. This was many years before Mulberry became the cult brand it is today. I bought the most expensive jacket I had ever purchased; my friend filled up the boot of the car with her acquisitions. I was driving in the fast lane on our return, my Metro’s windscreen wipers working overtime to battle through the rain. Much to my companion’s bemusement, I felt a massive sensation and a voice in my head instructing me to pull over into the slow lane. Now. I went from 75mph to 40mph and we chugged back to London.

When I arrived back in the flat, the answer machine was flashing. I pressed the button.

It was a male voice. ‘This is Sussex police. Please call us urgently.’

They told me that had Big Foot died instantly. He was Ros’ boyfriend, a brilliant, gentle giant of a young man from Edinburgh who adored her, who’s name, much to shame, I can’t recall. There is a great deal that I can't recall. Ros was in hospital with life-threatening injuries. She didn’t make it out of the operating theatre.

For twenty years, I didn’t drive on the road where they hit a tree. The camber was wrong; it wasn’t the first accident on that stretch. I hope it was the last. For twenty years, I drove miles around to avoid it. And yet, I still don’t know exactly which bend it happened on. These days I do drive on that stretch of road slowing down and thinking of her.

This year on 5th October I visited her grave. I remember her every day, but now that I am living locally and have recovered from my latest ordeal, it seemed fitting to go to the beautiful little churchyard at the foot of the Downs. I said hello and goodbye. I'll be back. I thought I would sob, but I didn't. I shed a tear thinking about the cruelty of a life lost so young but then I smiled when I remembered what a wonderful friend she was. How blessed I was to have known her.

Where it's harder not being the patient

For six months I have fallen silent. Not because I haven’t had anything to say, but because my writing energies have been directed elsewhere. I have written a novel which is very - and I stress very - loosely based upon my experiences of having cancer.

The process was cathartic, occasionally painful (emotionally painful because I was revisiting things I want to put behind me and physically because sitting hurts so bloody much), sometimes frustrating but mostly wonderful. Why, oh why, did I end up with a pilot as one of my key characters? I know zero, zilch about flying. Thanks to two pilot friends and reading three books from cover to cover on life as a pilot, I have gained a smidgeon more knowledge of life in the skies. Imagination is a wonderful thing, and I have loved indulging in the creative, imaginative process that is fiction writing.

I have had two books mainstream published, one a self-help, the other a biography. But I have also penned four novels. The first was trash, the second was started during my MA in writing, but young adult’s fiction set in a boarding school is not exactly mainstream and the third… Well, I had totally forgotten I even wrote it. A few weeks ago, I promised to send some past work to my amazing writing mentor ( Emily Maher – more about her in another post). Scrolling through my computer files I was stunned to find a complete manuscript (95,000 words) of a novel I wrote the year before I got sick. Now I’m thinking about it, it seems inconceivable that I had forgotten about it. But I guess that’s what the combination of shock and chemo does to one’s memory. Then, like now, I loved the writing process.

Imagination is a wonderful thing. When I was desperately ill, my inspirational healing guru and now dearest friend, S anna Carapellotti , wrote and recorded a bespoke meditation for me. Her voice led me to an alpine meadow and then into my dream chalet where I lay in bed, well and happy, surrounded by wood and warmth, drinking in the jaw-droppingly beautiful views. It took me far away from my reality, into a safe, healing space. This time last year, I was well enough to visit that imaginary meadow in Switzerland. Then it was high above Crans Montana; the sun was hot and the crickets created a cacophony. This year in early June, it was on the other side of the Rhone valley where the multitude of alpine flowers created a visual display worthy of an oil painting. Today, I am lucky enough to be back in my favourite spot again. The weather is cold, the clouds hang low over the mountain tops but the fields are still green, the streams rush with water and the cows, grazing low on the hillsides, create insistent melodies with their tonal bells.

Perhaps luxuriating in the imagination isn’t an indulgence or an escapism, but a necessity for survival. Whatever it is, I love it! This is one sort-of muscle that I am happy to exercise. Daydream, make or create, I thoroughly recommend giving it a go.

This week I fulfilled a dream. Wow – I feel so lucky to be able to write that, because so often our dreams remain in our heads! And what a shame that is…

I have always wanted to see the Northern Lights. It’s probably because I love colour, anything to do with natural beauty and of course, being a true Capricorn and a mountain goat, I have a deep affinity with snow and the mountains. When my profoundly generous parents asked me what I would like as a 50th birthday present, I knew straight away: a trip to see the aurora.

It was up to my husband to organise the trip; a challenging task as the research of holidays has always been my domain. Planning a trip to the far northern reaches of the globe perhaps wasn’t the most sensible for someone with a reduced immune system, not long out of the harshest of chemo, with limited mobility and considerable pain. My doctors were consulted and my sage GP told my family to get on with it and book the trip. As he knows, nourishment of the soul is the most vital of medicine.

Finland is a bit short on true mountains, however it does have snow in abundance and quite possibly more pine trees than anywhere else in Europe. And of course it is home to Lapland. It was snowing in Helsinki and somewhat grim in the underground hotel we stayed in overnight at the airport. Things were not much brighter the next day when we flew 1000 km to Ivalko in Lapland. I tried not to grip onto the rear seat as our taxi driver drove 120 kmph whilst speaking on her phone (no hands free up there), hurtling along snow and ice covered roads that we would take gingerly at 20 mph. And then we were there.

Our cabin was part log, part pseudo igloo (of the glass rather than ice!), well-equipped and very cosy. Later that evening whilst eating dinner, a wave of excitement swept through the restaurant. People left their tables, food turning cold, flinging on the thermal layers whilst grabbing their cameras. The lights had appeared. I was a little bemused. Up in the sky were shimmers of clouds, sweeping across the sky then fading away, reappearing elsewhere. They looked like ghosts – white swathes of rapidly disintegrating mists. But where was the colour, the greens and the pinks we see in photographs?

Fortunately, my husband is an accomplished photographer and had come fully prepared with tripod, fancy camera and knowledge of the correct settings. They say the camera never lies. They say that the camera can’t see as much as the human eye. In fact the camera picks up the greens and the purplish hues. The long exposure captures what we can’t see, and it’s profoundly beautiful.

There was something disconcertingly theme-park like about the resort, perhaps due to the large numbers of Chinese who screeched every time they saw the shimmering lights, their cries filling the still skies, their impotent iPhone flashes polluting the darkness. But by the third night we had worked out where to go to find solitude and blackness. The cold froze our breath and burned our fingers and toes but the beauty of the landscape and the wonders of the aurora warmed our souls.

It was an experience I will never forget.

Doris. It’s an antiquated name conjuring up, to me at least, visions of a serene lady with a purple perm and sturdy lace-up shoes. But today, Doris is furious, creating a maelstrom of misery, bringing travel chaos and disruption to much of the UK. All rise for Storm Doris.

So here I am in sunny Sussex, where her tentacles have caused a few branches to snap, far away from the eye of Doris’ viciousness. But weirdly, her venom has dripped its way into my sciatic nerve, and oh boy, does my leg hurt today. It’s been a couple of weeks since I’ve had that insidious, relentless burning pain in my lower leg, symptomatic of sciatic nerve damage. I couldn’t work out why it hurts so much. Too little sleep? Too much walking? Too much swimming? (Quite the little athlete I’ve become!) Too much sitting? Worry? Most likely yes to all of those.

However I think the major contributory factor is pressure, and I don’t mean stress-like pressure. I did a quick Google search and had an aha moment when I discovered a clinical study by Sato J, et al published in 2011 entitled, ‘ Low barometric pressure aggravates neuropathic pain in guinea pigs ’. I’m happy to be compared to a guinea pig (preferring the definition of - noun: a person or thing used as a subject for experiment , as opposed to, a domesticated tailless South American cavy, originally raised for food ).

It appears that when barometric pressure drops, the pressure against our bodies fall too, so areas of injury begin to swell. This causes inflammation and pain. This theory has been tested out in a dentist’s waiting room in Austria. Changes in barometric pressure revealed that the stronger the daily deviation was from the average atmospheric pressure, the more patients presented with acute pain at the dental emergency department.

So damn you Doris, (and Ewan and Fleur and Gabriel – our storms yet to be born) because you hurt me. I left the windy, rainy, storm-prone north for sunnier climes down south, but you with your barometric hold just don’t let go. At least I won’t need to buy any meteorological equipment; my titanium rod does just the trick!

As those of you who know me are aware, I am addicted to knitting. I love the infinite variables of combining yarns, textures, colours and patterns; I love planning, making and creating, and ending up with something that is lasting and treasured. It may not be cool, but I have spent numerous happy hours on my all-time favourite website, Ravelry.com, viewing endless possibilities, searching for the perfect pattern or dipping into the limitless options of adapting a pattern for the ideal yarn. For me it is a tranquil place to visit, a virtual place of imagination and hope.

So it came as a brutal shock to discover the most ‘hot right now’ design: a Donald Trump voodoo doll! As I write, it is the favourite pattern on the website, ‘favoured’ over 2000 times today alone. (Remember this is not Facebook – 2000 favs in a day is one heck of a lot in the world of knitting and crocheting!) It’s not possible to tell how many people have actually downloaded the pattern, but at £4.20 a pop this could have generated the creator quite a nice little income. I like to think that she designed this as a bit of a hoot but what it has unleashed is a torrent of vitriol on the comments page.

If I were an American, I would not have voted for Trump; I don’t agree with his policies. But, however much distaste I feel towards him or any public figure, I can never condone sticking pins in an effigy of them. To me this little knitting microcosm demonstrates how terrifyingly divisive western society has become; how we feel that it is ok to feel and act out our hatred. Today, it may simply be sticking pins in a crocheted cushion for a bit of a laugh, but is it really such a big step to stabbing pins in flesh tomorrow?

With his isolationist policies, I suspect much of this stirring of negative emotion and propagation of fear has been caused by Trump himself. But we need to remember that hate and fear creates disease: disease in our society and disease in our bodies. You may not want to belong to the community of crafters that comprise Ravelry.com, but please join with me in knitting together a virtual yarn of hope. However much our opinions differ, we need to cast off hatred, if for no other reason than we feel well with positivity and sick with negativity.

 

Perhaps the hardest part of my journey was the loss of our home. As I’ve explained before, I got on a train at the end of August 2015 and have never been back. To me, our home represented love, hard work, security, peace, beauty, tranquillity, achievement and friendship. 

Fourteen years earlier, it was our very own grand design. We rescued it from dereliction. Walls were buckling; the chimney wasn’t attached to the roof; the water tank was finely balanced on a single sagging rafter; a ladder was the only access to upstairs; the bath was in the kitchen and black soot lined the cupboards where smoke from the old stove arose up through the bricks providing carbon monoxide heat to the rooms upstairs. Then there was asbestos in what was to become our living room; the collapse of a retaining wall and the large old barn that the building inspector condemned. It was a stressful project but the results far exceeded our dreams. Our home represented happiness.

I haven’t, other than to my closest friends, shared the story of our house from September 2015 until we sold it in early September 2016. We knew early on that my treatment would last a year, so we organised for our belongings to go into storage. Imagine our delight when, within two weeks of leaving, our estate agent announced she had found a couple who wanted to rent the place. Not only were they prepared to pay the full asking price, they also would carry on with the holiday let, a business that had gained many accolades and of which I was rather proud.

I had a great deal of contact with the woman renting our house – emails and telephone calls, although we never actually met. She spun wonderful stories creating parallels with my life, so I rapidly came to like and trust her. This could not have been more cruel, at a time when I have never been so ill and so vulnerable. When it became apparent that she had inveigled her way into my trust, she disappeared without trace and her lover returned to his wife. And so, just six weeks later our house was empty. It was the wife who became the unlikely heroine of this story. Not only did she take her husband back, but as he had lost his highly paid job as a result of claims by his lover (along with most of their life savings), she paid the rent for the remainder of the lease.

Our beautiful house sat empty for ten months, tended by dear friends who visited weekly and made sure pipes didn't burst and squatters hadn’t moved in. (The latter being somewhat unlikely as even the Jehovah’s Witnesses only found us once in fifteen years!) At the beginning of September 2016, a delightful family bought the property and having heard from them only last week, I know that they awaken each morning with joy in their hearts as they soak in that view and like us, feel blessed that they can call that special place home.

I haven’t yet worked through the grief surrounding leaving our house on the hill. I know we are profoundly lucky. We are not homeless; we have funds from the sale of our house; the people I love are safe. Our situation is as far removed from the homeless refugees we see daily on the news as is possible, or indeed, even my grandparents, who fled the Nazi’s with nothing except a few suitcases. So if I feel such loss, imagine what it must be like for them?

As I look at the painting of our former view which hangs on the wall above my desk, I know it’s time to emotionally move on, time to create comfort and security somewhere else. I know that in my head; my heart has a little catching up to do!

A couple of weeks ago I turned 50. For some this is a difficult time: the acceptance that middle-age has firmly arrived and that everything hence forth will be on the downwards decline towards the inevitability of death. Some may struggle with the fact that they haven’t done or achieved what they had dreamed of in their youth and be engulfed in a haze of regret. For me, it was none of that. It was a time of huge jubilation and celebration.

A year ago, I simply didn’t know if I’d reach the ripe old age of 50. I certainly didn’t know if I’d be in a fit state to celebrate. In the company of my closest friends and family we partied in style. We were only a small group, but we covered a large part of the globe, with folk flying in from Singapore, South Africa, America, France, Holland and the length of the UK just for the evening.

Thanks to internet shopping, my red sparkly evening dress came from America; the one from China was a shocker and had to go back! I donned glittery high heels (I would never, ever have worn such bling in the first fifty years of my life) and embraced my short hair with large dangling earrings. And amazingly, despite the dodgy leg, I stayed in those high heels from 7pm until 3am the next day. We talked and laughed and cried and laughed some more and I have never felt so very grateful and happy in my whole life.

People talk about the before and after of having cancer. For sure there is a line that is drawn in the sand of one’s life. Nothing can ever be the same after a diagnosis and going through such horrendous treatment. One’s perspective on life shifts and perhaps that is the true gift of having had cancer, which Sophie Sabbage talks about in her Cancer Whispering book. I am grateful in a bizarre way that my diagnosis occurred when I was 48. Reaching 50 really is a massive turning point. I have been given freedom to make profound changes; to do whatever the hell I want to do.

I think I know the approximate shape of things to come, but then again that may totally change. We don’t know what’s around the corner. I don’t know what the results of my scans will be in a week’s time; I do know what I want to happen and what I want to do and what I want to accomplish, in the short term at least. But if the route is circuitous or the destination isn’t reached, it doesn’t matter, because I am 50 and wow - that's amazing! I have no regrets.