preciouslysparkled

[preciouslysparkled]

Stand by me

In a distant memory, somewhere between dream and reality, I was on a lonely road. A dark path I really didn't want to walk down. Like watching a horror movie, where you scream at the screen not to go there, but the character does anyway. So did I. Because the other paths were impassable. And as I did, I got braver and I decided to face the monsters, mostly on my own. In doing so I became a bloody slayer. A champion of dark solitaire paths and running the gauntlet.

I had cancer. A word I had hardly wanted to pronounce before my diagnosis. As if it would make me more likely to get it if I talked about it or by watching cancer charity ad on TV that made me squirm and reach for the remote... Reason being, I didn't understand enough about it.

I was, like most people, in avoidance, in denial that such a thing could ever happen to me. It happens to other people, right? Well, duh, it clearly doesn't. And boy did I learn the hard way. But that story has already been told. And so has some of the following shocker years of operations and harsh treatments. There is no need to revisit today.

However 'the now' is a more difficult story to tell. Because it has no proper direction nor does it have a set end. It silently rolls along. The combative mind continues its daily quest to the gym for pain relief and prolongation of life. Where dark thoughts are quashed in the leg press or Smith machine.

It's a story of living in coexistence with an endless long post cancer medicated void, where the dark clouds are always lurking somewhere not too far away. You can see them in the distance and you can hear the rumble. If you choose to. But I don't, most of the time. I used to hate thunder by the way, when I was little. I was afraid. So much so I vomited profusely sometimes. Reason being, I didn't understand enough about it.

During the last couple of years I have been caught up in a few potential storms but they were avoided in the end. Going through the mental torture of investigations and waiting for results become part of the parcel, so to speak. But it never gets easier. I am just better at dealing. Reason being, I understand enough about it.

Now we have entered a new decade. Glancing back, the last decennary was one to remember. Many would argue, to forget. But I disagree. Although I admittedly look back with sobriety of silent mournfulness, I also uphold abundant pride. For what I see is someone facing up to fears and dealing with tribulation. Finding that inner strength when the body is weak. When bedridden for months on end, in chemo haze and morphined benumbed existence. When crying in exhaustion and pain. When looking like a ghost of former self.

Humbled by the care received and the selflessness in those who tend to us in our darkest hours, gives dauntless force of mind. I learned so many things. Most of all I learned to know more of myself and the unvarnished truth of life. Reason being, I understand.

So, a new year. And a new storm might be forming. I'll face the eye of the storm if it turns out I need to. But this time all I ask, most humbly, instead of being in solitude on that lonely road, will you stand by me?

Soundtrack

https://open.spotify.com/track/6rrmZBm4bowX4QgbeeSXaT?si=1yMVedX9QMWtqDCaUFq3Lg

Stand by Me,

Camishe, Max Oazo

[preciouslysparkled]

Rattmuff, Right here Right now

About as uplifting as sitting in a funeral parlour is to wait for a scan in St George's breast care unit...Sub A waiting area...at least better than the dreaded Sub B...Then you're closer to being on death row...

So, how to diverse thoughts in a glum place like this? Maybe by watching the not so skilled care taker trying to change a lightbulb. Apparently banging on the ceiling, breaking a ceiling tile and leaving the poor abused bulb hanging by its cord and huffing "you're having a f***ing laugh" and "f***ing hell", seems to be this individuals way spreading warmth and kindness to worried potential cancer patients ...

Another way of wasting time in a waiting room is to shop on Amazon...I just happened to one-click on a pair of new gym leggings...never mind the one-clicked pair from last night...or the week before that...The rather worrying one-click today though was a steering wheel cover...Rattmuff in Swedish...Love that word! I had absolutely no pre desires nor needs for a rattmuff but today seemed to be the day when a rattmuff seemed essential to my existence. In fact today I decided that a rattmuff is a must for any discerning driver. Especially cow patterned...rather fitting as I have been called it in traffic a few times...

My name was called. Time to go and face the music. Going in with trepidation despite being a pro. But the highlight of today was the elation of coming out when no extra ultra sound was needed. Results will be analysed closely as usual but on face value radiologist was happy. Yay!

Smiling to the world and walking in time to Fatboy slim in my headphones, through the hospital. You know, dancewalking as if I was enacting a part in high school musical...with head slides included. The only problem is, I am not 16. And I was walking through medical school at hospital, not high school... But hey, the feeling was priceless and earned me a few smiles!

Moments of inner peace. Right here Right now.

Soundtrack

Right here Right now, Fatboy Slim & CamelPhat

https://open.spotify.com/track/6VtKtv4e3u4hbUsS3iQTD5

[preciouslysparkled]

Let it go

#fiveyearsurvivor

How does one explain the inexplicable or summarise the immeasurable? One can't. I can't.

Five years ago I was told I might not live for much longer. Undeniably, that was one of the worst days of my life. Up there in the same league as loosing my parents. But, it had less finality to it though... I wasn't dead yet.

I embarked on a journey that can't quite be explained  in every dimension. Of course one can talk about the horrors of treatments and the shenanigans of hospital life, but the raw and honest truth about the toll on one's inner self, is harder. Because after a while no one wants to know. That is the truth. Life is hard enough for all. There is only so much cancer this that and the other, that people including myself,  can stomach. Cancer fatigue sets in.

I spend most days not thinking cancer. I spend most days not talking cancer. I spend most days not living with cancer tattooed on my forehead. I don't want to be that person that people avoid talking to in fear of that the subject comes up. To be the killer of any social gathering where the mood bomb #cancer is dropped for a sympathy vote.

I just want to be me. But it's a constant juggle. Because Cancer is a part of my life. A part I can't just erase. I live with the scars everyday of my life. I live with the side effects of operations and medications everyday of my life, for the rest of my life. But I do so proudly. Because I survived.

So true to say is that it is not possible in words to summarise what is immeasurable. To feel like a survivor is immeasurable.

That can also be an example of inexplicable things. To survive. The fact that I didn't die. Just yet anyway. I mean, it was and is a lottery of life. I had an aggressive quite advanced cancer. One of the ladies that was operated the same day as myself, shared hospital ward with and whom I stayed in contact with, had a less aggressive type and with no spreading. Judy died last summer.

I know of countless others. Gone. But there are also countless more like me. Here.

So there is little point in trying to understand.  Little point in fearing. Why fear the unbeknownst? The certainty is there staring us all in the face. Like Dr Diffley said on that fateful day to my query if I was a gonner, "We are all going to die"... Sooner for some and later for others.

I have been given a gift. I have had five years of life where there would have been none. Sometimes, it comes back to me as an unbelievable but true story. The fact that I nearly died. The fact that I went through a year of hell and suffering.The fact that it might come back. The fact that no one knows what tomorrow will bring. But most of the time I put those thoughts to sleep and I let it go.

Soundtrack

James Bay, Let it go

https://open.spotify.com/track/40EB7ABUO6MoWMUwPKptJ7

[preciouslysparkled]

Om shanti You never know when in life you'll come to need those breathe, trance and chant skills that yoga can give. Travelling back from Arlanda in Stockholm on Sunday could be deemed one of those occasions as to some it bore likeness to a journey from hell...But then again a great chance to study in people under duress and subsequent coping mechanisms. As we were delayed without any information to be had on the ground, I was glad to see so many reading books as a means of making time pass. Some stuffed their faces with rubbish but most seemed stuck on their phones with little or no interaction. As delays goes, none are particularly welcome nor enjoyable but on this occasion it must be said that Scandinavian Airlines did not do itself proud and nor did Arlanda... New departure times were messaged in farcical succession by email, every half hour or so but nothing displayed by the gate and no staff in sight. One message indicating that the flight was leaving in 5 min although no plane was in view...This caused lots of worried souls to get up in a panic, frantically looking for a plane and a gate to board... Finally after hours of waiting, sitting on the floor as seats were scarse, and without even a glass of water offered, we were told by a lone poor SAS worker that the plane was actually in Arlanda, but parked remotely and due to adverse weather earlier in the day and staff shortages there were all sorts of delays within the airport.  It emerged that one important issue why the gates were crammed with people, was that there were hardly any buses nor staff to take passengers to remotely parked planes...and most planes were parked God knows where, but not at gates... When finally a bus was found, we were packed into the bus like sardines and taken on a grand tour of Arlanda! We saw; all terminals in succession coming and dissappearing in the distance, rather empty runways aswell as fields of dry grass, some hotels and even some luggage scattered on the tarmac...Like a dystopian world, we travelled into the distance. Some fearing we had been hijacked and were now taken to the woods to be disposed of... At last we saw a plane, indeed parked remotely, as there was a main road next to it and lots of big hangars. Now you might think that the inconvenience was over but no. It had just begun... Arriving at the plane things got interesting. We were not let out of the bus! Again no information whatsoever and standing under someone's armpit, the calmest of calm had their patience tested. A flight attendent eventually emerged from the plane, leisurely walking to the bus to inform us in a screeching voice that the captain had decided that the stairs leading up to the plane were not safe, and therefore we would have to wait for another to be delivered.  Also adding in a frustrated and rather surly abrupt way, she said that the delay had other issues involved as the pilots were coming up to too many hours in service in one day. If we didn't take off within the next hour we were basically stuffed... This is when you start bonding with fellow passengers... Only missing a good bottle of wine and some cheese, the laughing fits in despair could have become a full blown party. When after 30 min a blue sets of huge stairs came driving seemingly by itself, the cheers were deafening but the sarcastic Brit next to me only quipped "just wait until this stairs is deemed too blue or possibly too wide and were back to square one..." That was however not the case, and being let out of the bus we were rushed by the attendants like cattle to board and sit down quickly, in a less than eloquent manner. These manners then continued throughout the flight as the sour faced air hostess literally threw out the teas and coffees at people aswell as having the opportunity to bark at me to stand behind the curtain when waiting for the loo, as she pulled it shut in my face! Just wait dearie. Karma is a bitch... The flight took off, with pilots, which was helpful... Now, this surely must be the end of the day's adventures? No. Arriving at Heathrow, I was happy to see two of the suitcases on the carousel. It soon got apparent that I was one of the lucky few to get any. Soon after my bags had arrived, it was displayed that all bags had been delivered... That would mean that half of the plane had not had their bags put on the flight. Now...after hours of disruption, total chaos in Arlanda, shambles with bus and stairs and stress of delays, some lost it at this point. A man literally howled abuse to his wife as if she somehow was to blame. Another man rushed around tearing his hair, talking to himself and looking bewildered. A family with two little ones looked close to tears and an elderly couple looked close to collapse... One suitcase that did not arrive was ours. As my partner's stress levels were now also starting to hit the roof with him pacing up and down the baggage reclaim hall as if by magic the suitcase would appear on another carousel... I put myself in a baggage service queue, which length and moving speed makes you loose faith. The couple in front were travelling to Toronto in the morning for a three week fly drive in Canada. With no luggage nor fixed forwarding address they were in polite terms in uproar. When I finally got to the front to fill in forms, I was left with the advice to "Go home". "We'll get in touch... " Now, when someone says we'll get in touch, it basically means bugger off and if by some chance your bag turns up we might contact you...or not... Regaining faith, we were amazed to find that our little Indian driver had waited in the airport...spending all afternoon and evening at Heathrow. He greeted us with a smile and said in his peaceful "namaste" ways with a touch of Yoda, that "you have arrived and alive you are, that is a blessing is it not? You were not on your own in your experience, that is also a blessing, is it not? To share stresses with others makes it easier, does it not?" And of course he was right. What is a delayed flight? What is an uncomfortable journey? What is an old bitter hag of a flight attendant? What is a lost bag? In the bigger picture it means nada, rien, nothing. Listening to Bollywood with a mix of yoga on the way home, the stresses were soon a distant past. Om shanti Soundtrack Om shanti shanti shanti, Shankara https://open.spotify.com/track/3tWq3pTugH7tGu0jemX6EG

[preciouslysparkled]

Thank you NHS Today I sat in the waiting room where I was 4 years and 9 months ago, before my diagnosis and unknowingly at the very beginning of my cancer journey. My inner self spoke to me loudly that day telling me to stay calm. When I entered the very consultancy room that sealed my fate, that inner voice didn't need to instruct me. It sang thank you for the music rather than the final countdown as it did back then... I hadn't been in that room since. I sat there today thinking about my lack of fear. How I have grown and how I was liberated of all fears you cannot control. During that first procedure, I was terrified.The entirety of the time, I was in agony from the biopsies, pain from being sqeezed, pulled and pressed. I was petrified. But I didn't cry, I didn't move, I didn't breathe. I just watched this consultant straight in his grey eyes to try and make sense of what he had just said. One of those situations you want to look over your shoulder to see who he's talking to. Because there was no way that could be me.That moment scarred me mentally and emotionally more than anyone can realise if it hasn't been experienced.  But today I sat there with the same consultant, this time sharing our happiness of the summer heat and the England world cup win...But we also talked about the NHS and the imminent 70th celebration.What an institution. Say what you will, but this overcrowded, at times chaotic, underbudgeted, overworked and understaffed organisation, is a true life saver. And I am nothing but grateful. So, thank you for treating me, for looking after me in my hours of need and for restoring me. There are only two ways it can go, going through serious illness. Either you don't make it, which is really shitty or you come out on the other side for however long, to be able to reflect on either the shittyness of losses or the wonder of gains. Yes, in this journey you can concentrate on the losses. Because again, yes, in ways, you will loose. I did loose my hair. I don't have many real eyelashes left.  I've lost sensation on half of my back, under my arm and down my tricep. I've lost my breast and is left with a neverending reconstructed scarred wonky small boob with no connection to any sensations.  I've lost my period. I'm put in fake menopause. I have no kids. I lost the chance of ever having any. I lost my dignity. I lost my innocence. I lost some friends. But... I have gained nicer hair. I have gained a multitude of wigs.  I have gained fitness. I have gained patience. I have gained new friendships. I have gained a fighting spirit. I have gained strength. I have gained a new outlook. I have gained endurance. I have gained hope. I have gained belief. I have gained faith  I have gained new meanings. I have gained new lessons. I have gained more love. I have gained life. #NHS70 #thankyounhs Soundtrack Thank you for the music, Abba https://open.spotify.com/track/08GOw3NsrJ0LsCCeyqzt3b

[preciouslysparkled]

Dancing in the Silence

Some say hope leaves you last. The hope of a bright today and an even brighter tomorrow. Hope, I have in abundance. Otherwise, what’s the point? Without hope, life could be a dark and suffocating place with thyself being your worst enemy, keeping you in the shadows. I know why I am hanging on to my hopes. Because, I experienced what darkness is, therefore I can appreciate light.

That doesn’t mean all my days are light. They are not. But when the sun is setting over me and darkness engulfs, I open up my hidden inner chamber that nobody knows. The room within where I store memories and consoling thoughts. Images of me fighting for my life, of strength and defiance and of love. Contemplations I don’t share. That is when I put on my headphones and emerge my body and soul in musical rapture. I dance in the silence.

The same headphones are adorning my crown today. I am in surgical admissions awaiting yet another operation in a long line of operations in an attempt to repair what was broken, tethered and scarred.  Some might question why. Maybe it doesn’t warrant an explanation. Because in order to understand afflictions and healing on more levels than one, one must comprehend that any elucidation is needless. The answer is self explanatory. Hope.

St George’s is one of the largest hospitals in the UK. Yet, today in this city of over 10 million souls, I am recognised and greeted by name. The whole of Miss Ali’s plastics team seems to be present. It has been a little over 10 months I saw them last, but they remember me well by now.

At the pre surgical check the drawing of lines on body for assurance the right sites are cut into, takes place. In the crammed room, I am bared in my undies with the team of five present.

Standing in that room turns out to be one of those moments where you question your sanity and the choices you make, as I look down at my undies…Grabbed in haste and pre op butterflies…. So there I stand, wearing knickers with sweets printed at the front…and “TRICK or TREAT” written at the back…

With consultants trying to keep a straight face, my breast is examined, my buttox thoroughly inspected and drawn on. Any self consciousness was left by the entrance of St George’s, over four years ago. By that door, I left far more than modesty behind. But never my hope.

As I will be taken down to the operating theatres this afternoon, walking the same walk as I have many times, I will open that hidden chamber once again and in my comforted mind, I’ll be dancing in the silence.

Soundtrack Dancing in the Silence, Belgrave https://open.spotify.com/track/1qmDw5RimfxDPdfUbVdAZb

[preciouslysparkled]

Everglow

The landscape is whizzing past as I sit on a train heading from central London. A blur of houses, trees and people. All in their own little lives going places or not. The man sitting on his own on the park bench in Wandsworth Common. What’s his story? Is he like me, deep in thought? Does he have inner peace, an everglow*, remembering times gone by and people he’s shared his life with?

The darkness of the season makes the setting a grey and glum one, but I try to turn it around and find peace in watching a slumbering tree, the leaves ruthlessly discarded by the tree, as it is in survival mode and rids itself of what drains it’s energy. A hybernation I was well acquainted with a few years ago. The mental shut down, building strength to cope with tough months ahead.

In the cold harshness of the season, the tree stands alone with very little sign of life. So did I. During that time of illness, I lost touch with people I cared about. I couldn’t cope with the pressure of keeping communication alive, of connecting with life outside my bubble or of being disappointed by others. Therefore I cut the cord. I had one mission. One mission alone, that I put all my effort in, all my focus on the sole undertaking of survival. I lived within. I developed a relationship with myself, where I quelled fears and learned to love me and my own company.

When I went to Wales a few weeks ago, I walked in the Brecon Beacons, a special place. On my way up the Table Mountain I encountered a varied terrain. Meadows, sloping fields and trees dotted around the autumnal spectacular colouring, and lots of sheep. On one slope stood a tree. I stopped and admired it for a long time. An oak tree with a trunk surely wide enough needing several people to encircle. The oak had arms stretching to the sky and arms reaching wide and low, as if it was keeping in touch with the present, past and future in its branches directions.

It made me think of me. This tree has stood there for well over a hundred years. It has seen life being born and life die around it. It has withstood wars, innumerable storms, bitter winters and relentless rain. Surviving, it stood proudly through tribulations in pursuance of the warming sun and budding miracle of spring. It stood firm. But it never lost touch of it’s elements. It kept inherently true to self.

I have been trying not to loose myself throughout my life, keeping that little girl from Gotland within. The girl with a laughter that made others happy. The girl who cycled to Fridhem in autumn, sitting on a windswept stone beach letting the sea overwhelm with sounds and smells. That little girl is still there and will always be. Sometimes in person, sometimes in spirit.

But unlike the oak tree on Table Mountain, in my own fight for life, I forgot to keep solely to my elements. I might have forgotten to say how much people matter. So if you have touched my life and I’m yours at some point, I hope you’ll feel my warm thoughts, from my very own moment of Everglow.

Soundtrack Everglow, Coldplay https://open.spotify.com/track/5qfZRNjt2TkHEL12r3sDEU

*Everglow, a word describing happiness, warmth and sadness when thinking of past and present relationships with people.

[preciouslysparkled]

Make you feel my love

Four years this autumn and life did set itself into a stready pace of making a new one for myself after I faced my peak in the Cancer moutain range. A challenge like no other, but gracing me with a breathtaking view once I made it to the top.

To begin to exemplify what it has taught me is inconceivable, but strength, gratitude and humility goes some way towards summing it up. As the quote goes, strength doesn’t come from what you can do. It comes from overcoming the things you once thought were impossible. I have learned that I am much more than my scars. I am here and now and I am alive.

How could you ever pay back that gratitude and how could you use that strength and humility to make this a better place?  When an old friend was taken ill, one such moment befell and as it did, I knew this was one of those rare moments in life where you selflessly have the opportunity to make a profound difference for someone else.

To be a hand that holds without fear and gives strength in the eye of the storm to a fellow humanbeing, facing his demons in life changing circumstances, is something I treasure and  I am humbled to be able to do so.

I can only hope that I can inspire someone to dare to take that step. To reach out to someone in need, not expecting anything in return.

My father was a tremendously funny man and one of his jokes which I know I have written about before and probably held a certain seriousness attached to it, was that he wanted “Me today, You tomorrow” etched on his tombstone. If you just dig a little deeper into that statement it holds some truth. The simple fact of life. It happens to anyone. No one knows what tomorrow brings but make today special.

Being strong and moving forward doesn’t mean avoiding pain, but being able to look towards to a new day in spite of the rain storms. That is what I am doing with a hope that I can make you feel my love.

Soundtrack Make you feel my love, Adele https://open.spotify.com/track/0mqTcM8kuu2IYPotMt7AzS

[preciouslysparkled]

Love me like you do Apparently it's not about people like me according to the cockney cabbie David 60+.  It's about all these people coming here sucking the system, getting council houses and taking jobs. Although there is for sure always a proportion of users of systems in any society, there are absolutely those within the migrant groups too. Especially in a system as generous as the healthcare is in this country. But most of us European "foreigners", as we sometimes have been made to feel, are hard working and could of course go and live somewhere else as we have the freedom to do, but then again so could all the Brits living abroad. For me holding a Swedish passport, my birth country would offer amazingly beautiful scenery just like the UK has, a high standard of living and social security envied by many. But, here is the conundrum, I did not choose to live there. I chose to live here, my whole adult life, because I could and because I have had a love story with the UK for over 20 years. I have loved the tolerance, the diversity, the mannerisms, the wit and humour and above all the music scene. And I've always felt loved here as a part of the community. I have proudly promoted London and the UK as the place where Europe meets the world, for over two decades. It has been The one place on earth where being different is a celebration and anything but conformist. I have worked hard, payed my taxes and contributions for over 20 years and have been rewarded by society in an amazing way when I fell very seriously ill.  It saved my life. For that I am eternally greatful and humbled by the care I have received. Therefore I was deeply saddened when for the first time ever, I was not sure if I was welcome in my own home and I was shocked that there existed such an underlying resentment towards fellow Europeans amongst a seemingly larger part of the population of this nation than I thought. As if you were telling an adopted sibling they were no longer wanted and could not live in the family under the same terms. I think a person who has never left it all behind to live in another country, cannot understand the commitment, strength and heartache it takes to succeed and depth of belonging you develop where you have invested your life. The vast majority of people who come to London and the UK from Europe do so to study, work and to be part of and enjoy the multicultural and vibrant communities it has. In the light of globalisation here we are, countrymen  intertwined and mixed to such an extent, how would it ever truly be possible to segregate? A 1930s Germany comes to mind... The danger depending on what direction the government will take on EU migration, we could potentially see many skilled and educated Europeans move on. Not because I ever believe anyone would be deported like cattle. Rounded up like an exodus through the channel tunnel... No, the reason would more likely be the sense of betrayal and the question of if the society would make one feel welcome or not. Working to sustain a growing economy, the contribution of European labour over the last 40 years helping advances in research, in NHS, in care, education and finance, paying taxes, buying goods and services, is underestimated in media. It would be interesting to see figures on how much we have payed into the system not only by work but by promoting growth in bringing in vast number of visitors to this country as our friends and families come as tourists, spending money into the economy and enjoying this beautiful country. What do I know of politics and legislation? Not much. But I care and I do know what I see. And that is a country that needs to be comforted and put back together swiftly by sustainable solutions and as I am well aware, also inevitable compromises. Of course there is a limit to what a nation can afford and maybe legislations on benefits and the NHS should be seriously revised. Just don't put hardworking people in the firing line and taking the blame for a failing system. I might well be naive in my rantings but I care deeply about my hometown London and the UK and I want it to thrive. The months since the Brexit vote has made me and so many of my fellow Europeans see the UK in a raw light I wished I'd never seen and I have felt wounded. Watching the monster that was unleashed in verbal abuse including to those close to me, was just awful. I hope in time that the rifts and hurt will be healed in parts of the communities because this is such a great country with great people that I feel so strongly about.  I would hate to see it flush itself down the drain and become a split nation and xenophobia ruling the land, of the likes happening in the US. Rule Britannia but rule it wisely I beg you. Continue to love diversity like you always have. Love me like you do. Soundtrack Love me like you do,  Ellie Goulding https://open.spotify.com/track/3zHq9ouUJQFQRf3cm1rRLu

[preciouslysparkled]

Innerbloom

In the midst of getting the next part of the school year off to the best possible start and keeping up with my fitness regime that has gone from strength to strength, I got a phone call. Alister from Plastics. Took me a while before I made the connection. First images running through my brain was the recycling centre where I had dumped huge canvases in the wrong dumpster by mistake and legged it…Were they chasing me?…  Of course not dimwit.  I remembered. The hospital.

Is it not an amazing thing how the human brain can go from from the dumpster to the operating theatre in a nonne second? And even more extraordinary would be that a brain can choose to forget. A brain that has been filled with the long lonely walks of white hospital corridors, endlessly waiting in clinics, tough treatments and a love of the place that keeps me alive. St George’s.

Anyway, a last-minute cancellation had occurred and that meant I would advance to the top of a list probably as long as the Nile, for reconstructive surgery. Whoop whoop!! At the same time it was so far from my mind that I would got through surgery in January that it is a bit of a reality check.

At preop yesterday, I had to go through the normal paperwork and questions I have answered a shedload of times. In the midst of questions on heart murmur, valve replacements, chronic pain, hernia or significant problems with stomach acid they’ve snuck in “Are you a homeowner😨?…” Gets me every time….Yes… and it will affect me in tomorrow’s surgery how?…Maybe they’ll have legal advisory services on how to write your last will and testament just before anesthetics?…. But seriously, I do understand they need to establish if there is a social care issue that needs to be adressed, but even so it is a bit funny…

That was the excitement of yesterday and turning up today, I was quite looking forward to more hospital shenanigans. Bitterly disappointing on that score initially, as everything seemed to be calm and under control in Surgical Admissions. Or so I thought…

When I was called to be checked in by a little asian looking nurse, an encounter of language barriers took place…The same questions as yesterday, but now including some new ones… - Wearing nail varnish please?  -No -Take off please! -I’m not wearing any so that won’t be necessary… -No wear nail varnish. It’s procedure. -Ok, look at my nails, they have no varnish!! -No varnish? -No, no varnish…. -Ok. -Ok… It continued in awkward mode as my starved self is a little less composed than normal and a little on edge. -Food, please, what time is it? -Pardon? When I had my last food? -Yes!! What time is it? -? 😱I ate a snack at 10 last night. -Drink, please, what time is it? Getting her questions now I  could confidently answer that I’d drank water an hour ago. -Clear fluids? -? Yeees…the water was clear…

Thankful when the questions came to an end I could settle in to the usual waiting time infront of the oversized screen showing daytime television which is an endless treasure trove of the ridiculous and WTF moments. But it is appropriate for the setting as I’m sure it dispels some people’s thoughts.   For me sitting here always makes me ponder on time gone by and remembering back when it was all new and daunting. When it all felt as if I was in a film, that it wasn’t happening to me, but to someone else as I looked on helplessly.

I thought about the me of three years ago, staring into the mirror at a frail bald creature and how much she would have loved to have met the me I am today.

Hearing my name belted out loud and clear after 6 hours, waiting is finally over and it is time once again to walk the walk, I feel proud of the me that is here. The me that is conquering my own personal Everest. The me that has turned the wilted within into innerbloom.

Soundtrack Innerbloom, Rüfüs du Sol https://open.spotify.com/track/22FQIHFVTooytobKZ3h65E

[preciouslysparkled]

Find yourselfie... Happy new year to you all in advance! With a new year dawning you cannot help thinking of how fast time passes. As I went through my pictures, I totally agree that the best selfies are probably those that aren't... But sometimes a little amour-propre has it's place. Why does anyone take and post selfies? Maybe  the answer is we all want to be loved. We all want to be accepted and we all want to matter. But for me it's deeper than that. I think it is about creating a bond. A kinship with those around you. To share oneself, however hard the circumstances are behind a picture is a gift to the recipient and should be treasured. You could say these pictures is a chemo hairdiary of sorts, displaying in no way any narcissism but pride in how far I've come.  Self love is according to me being content with the work in progress that oneself is. Comparing yourself only to who you were in the past and humbly accepting your Iife now, a human with faults and aptitudes, like every single one of us.  Playing with words is an enjoyment of mine and as much as I love lyrics, I also like finding hidden meanings in texts and art.  Finding the story behind. When I look at myself in the pictures in my compellation, I remember every one of them, but some have more of a story attached. My Last chemo. You could call the picture "Finished" not only in treatment terms but partly in body and soul aswell...You could say that opposites made truths in that picture. Sad and happy. Weak but strong. Old and young. Ends and beginnings. Another picture shows one of my first days back to work. Maybe "Back to life" would be a suitable title. It was one of the happiest days you could imagine. My short hair was debuting without a wig and I felt free. The picture showing myself at Electrowerkz, a night of musical bliss, where I was back gigging and hitting town at the dark wave scene with my curles unleashed and strength returning. "Unleashing me" In a hotelroom this summer at an education conference, sunglasses on head, glowing with tanned happiness. "You live and learn" And present time. My newest addition selfie and my long hair is back. You could argue that this picture aswell, hold hidden meanings of opposites . Thus the titles could be many. "Anyone and someone", because in terms of hidden illness I am anyone. It doesn't segregate, it happens to anybody.  I am also someone, because in some ways I am trying to make a difference. "Same and different". I am still me, the same in many ways and I nearly look the same again as I did B.C. but at the same time I am not. I am different. As life can take away from you with one hand it can also give back with the other in new forms. "Damaged and repaired", my body was broken. It was cut, carved, sown, bruised, pained, bled, poisoned and stripped. The cuts have healed, the blood has dried, the stitches disintegrated, the poison has passed and the hair is back. Although most of me is seemingly repaired there is inevitably some  inner bruising. "Lost and found". Although I lost parts of me,  I made sure I found myself again.   Soundtrack Find yourself, Jacco Gardner https://open.spotify.com/track/4a0f7rpm3Z8hgrOR1IZXxb Watch "Not Alone TV advert - Macmillan Cancer Support" on YouTube https://youtu.be/c8R4EhrAgXY #no narcissism #chemohairdiary #keepingitreal #lovethyselfie

[preciouslysparkled]

Pompeii ------------------------------------ I went to the GP at the medical clinic...turns out I have nasty chest infection...my new middle name is Mucus... As I put on a random music selection, on Spotify, Pompeii came up first. It nearly made me choke. This song was one of my pepping songs, walking up and down our road when I was ill. I mean properly ill. In the now, it gave me a stark reminder of bona fide walls tumbling down and clouds over hills bringing darkness, as the tune goes. It also took away any small self pitiful thoughts I might have had, spending my holiday like an incarcerated abscess... Nearly all of us in the rather bare and soulless waiting area, a departures and arrivals for the ill as such, were coughing. There seemed to be an unspoken competition of the most vile wheeze, preferably with ratteling lungs. If it hadn't been for the pro, the old gentleman in his christmas finest, I think I could have been in with a chance there... As I sat there waiting...in the waiting room..as you do🙃...I noticed they had invested in a new computer screen showering patients in all sorts of important facts and sneaky little ads in between. For example, did you know 50% of patients don't turn up for their appointments? Toerags. Shame only those who did turn up, got to see this NHS info ad... The absolute price winner today was Budget Funeral ad... Yes, there it was, telling us that you can get desposed of for as little as £1495...that is if you choose Non-Attendance Cremation... So, if no one turns up to your final farewell, you effectively save £500 on the price! So no "In memory of" flowers, no commemoration or tributary speech and as if no one remembered nor cared, you're taken straight into the incinerator... The company offering this is called....wait for it...Memoria! Anyway, speaking of memories, it's soon Christmas and I am over three years away from that lifesaving operation I had. Three years away from the start of treatment. In that I am blessed and I know it. There is not a day, not a single day that I don't recall the fact I am here to tell the tale. At least for a while longer, right? I don't take anything for granted anymore and nor should anyone else. Christmas is the time for reflection, kindness and appriciation, is it not? So, my reflection is that I've had a good year. I have spent it working with little people. Something I love. I have visited places that matter to me, spent time with people that matter even more and my health has been ok, as well as can be, in a world of relativity. Kindness, in my books, doesn't miraculously appear over Christmas, it's a state of being. A selflessness you don't develop overnight. It's work in progress and it starts with being kind to oneself. Acceptence. So, with all the kindness I can muster, I will send strengthening thoughts to all those going through treatment this Christmas. Stay focused. No pain no gain.  Naturally my appriciation is that I got the chance to write about my reflections. Enjoying the effects of antibiotics and a concoction of happypills, makes it easy to reflect and to remember all sorts of times. Even those darker times I keep hidden away like Pompeii under ash and pumice or in my case, under smiles, laughter, hundered heels, 75 dresses and playlists that say more than words. Soundtrack Pompeii, Bastille https://open.spotify.com/track/0sooJd5WbNnnz5k6yO7FIQ

[preciouslysparkled]

Twin Peaks ———————————————

Back on the island of volcanic energy, for quietude and topping up that tan. One of the reasons I keep coming back to Lanzarote is the hold is has on me. You see it’s the place where I can breathe and just be. It’s a place that has given me energy when I had none and healed my body & soul.

Sitting at breakfast finishing my fourth coffee, I am as usual enjoying a bit of people watching as entertainment. I have befriended one of the waiters. His name wasn’t Manuel but near enough, Miguel. Like the beer. So he became San Miguel. On the first morning this week I asked for a 4 minute soft boiled egg. One minute later he was back with an egg, which made me suspicious. Decapitating my egg confirmed my suspicions as it resulted in a spectacular mess of a raw egg now mixing with my coffee and yogurt… San Miguel, a man of my heart, found the humorous entertainment value of this and deadpanned in asking whether the egg was too hard boiled for my liking?… and also adding they have a festival in winter where trowing of eggs is included, maybe I would join?…

Anyway, every morning since, as soon as I walk in, he declares loudly that my egg will soon be ready as it has been boiling for an hour…

At breakfast you have people like me, who only have a one worded grunted vocabulary before the day can start, Coffeeeee… And then you have the Spaniards on holiday…The amount of words they can spit out in ten seconds is mind-boggling and concerning for the quiet German couple at the next table…Probably thinking if it was them, they would have run out of conversation by noon…

Speaking of quiet, yesterday I had a reflexology and leg massage in the brilliant Thalasso spa, which was bliss. The only sound that could be heared except for the chanting of spa-esque psychedelic Twin Peaks, was my stomach deciding now is the time to to make one day too late Halloween party soundtrack of deep haunted screams…

Despite that I managed to put myself in a trance like state into the world of Twin Peaks and who killed Laura Palmer? I was so far gone that I totally became the easiest blond sales target for a masseuse on commission, as I am now the proud owner of a string of Tibethan stones, solely for my usage and holds incredible healing powers and can change colour with your mental state…all for the bargain price of 38 euros…I missed the whole sales pitch and must have at some point agreed in her world that this is exactly what I need and will make the whole difference for my condition…

So now you know, Tibethan stone necklace probably made here in Lanzarote for 20pence and a cup of tea as a nurse once said, are the only things you’ll ever need. It heals it all….

Lying here in the sun with feet as soft as a baby’s bottom and a string of stones or more like rabbit droppings, I am recharging. Maybe it is the Himalayan beads, the tea or the relaxing tunes of Twin Peaks, but I am breathing lighter. I am in harmony.

Soundtrack Twin Peaks, Furniteur https://open.spotify.com/track/1tBzrtufy1gK55dkehd7Jl

[preciouslysparkled]

Human

As I woke this morning, a few messages of love and support were flashing on my phone. A seemingly small gesture but hugely important at the right moment. I needed that extra boost and to try to snap out of whatever haze was beginning to settle over me and opening cracks in my well protected here and now shield.

Parking was a doddle as it is half term break for most schools, so that set off a contented mood. Walking into the place I never knew would become such an ingrained part of me and a place for endless inspiration and lifelessons in humility, felt good. St George’s Hospital.

The corridors lay still with a few people milling about here and there. As I crossed the entire hospital to the furtherest point, I reached my destination, a seemingly dangerous place….The Nuclear Medicine Radiology Department…

I’ve been here twice before and it is possibly one of the gloomiest experiences of my journey. Here only people with cancer spreading into the bone or possible skeletal cancer congregate. Today I shared the waiting room with another lady. A true south Londoner with a cool eclectic hobo style, showing a wonderful sense of style, harmony and confidence married into one. As we were waiting for our nuclear injections to be delivered from the hospital pharmacy and injected, we struck up a conversation.

She was here to have her 10th bone scan. She had advanced bone cancer and as she looked deeply into my eyes she said with a little smile on her lips, -I was given 6 months, innit. Now seven’s gone and I’m still here aren’t I? -Yeah, you certainly are! -N’ who’s got time to bloddy die anyways.  Got a business to run, like. Places to go, things to see, ya know… -Telling death to go Eff itself? -Yah, exactly. It’s hard and God knows I have my moments when I break like, but I get up, ya know. It’s the only way, innit Love?

And so it went on. With the constant undertone of that there is no other possible option than to stay focused and carry the hell on. So, as we simultaneously had our injections from a small metallic cylinder containing our nuclear tracer, we were joking about doing a double act as the radioactive duo turning on and blowing up the Christmas lights on Regents Street….What a way to check out.

While walking around the hospital for three hours before the radiation had spread into all the bones, I had time to reflect on her words and of the words of a friend who wrote to me yesterday.  It is true that however much positivism and mindfulness you have, we’re only human. The real test is not how long you can keep smiling or how brave you are in the claustrophobic 1 hour bone scan, where your trauma and sorrow catch up on you. Where tears are trickeling down the sides of your cheeks and another small part of you breaks.

It is how you pick yourself up. It is how you find that strength to walk out into the autumnal colours and appreciate them. It is how you accept whatever life throws at you and make the best of it. It is how you accept being you. Being human.

Soundtrack Human, Christina Perri https://open.spotify.com/track/4IqcDJPzDL8Hq8KwAX4jUE

[preciouslysparkled]

Too much is never enough

To be given a new shot at life carries a deep gratitude and a ground shaking awakening. Life as you knew it is gone and with it an innocence and realisation that life really is in the here and the now and a learning of the art of letting go. Letting go of what you can’t change or forsee and embracing what you can play an active role in. The Now.

I listened to a speech recently on this very topic. Although the lecturer was a showman and might not have reached everyone with his delivery of lifes wisdom. His message was clear to me and I sat there in my chair at the back of the hall with glistening eyes of unushered tears. Because despite his joking and self-centered approach, he was speaking a truth I’ve known, since my life changed with meeting cancer close up and personal.

Life is not in the memories of yesterday or in the worry about tomorrow. It is now. Of course creating new memories to cherish matters but what I mean is not to purely focus your existance on difficult memories of the past, loyalties of desicions taken in another time of your life or fears of the future dictating this moment in time. So much so you forget to live in the now. It is in this moment you are here. This moment. Now. Then it is truly gone, never to return. There can never be too many moments in the now. Too much in never enough.

So does that mean you should be living irresponsibly with no care about consequences? Of course not. But if tomorrow never came would you take different desicions on that last day to the ones you live by today?

I have been given such a gift to be here, but living as me in a different form. A different version of me. A better version. A me that like Cinderella prepares herself everyday as if she is going to the ball.  I have no fairy godmother dressing me though. I have Amazon Prime doing that honour. My one-clicking must have caused Amazon to employ a special taskforce working 24/7 in a gigantic warehouse just waiting for my orders to come through. The supervisor coaching his team… -Get ready guys, stretch, warm up the forklifts and get Yodel on the line. I can feel an intensive onslaught of one-clicking from Mrs E-G coming on….

One of my mottos is Everyday is a catwalk. Here and now. If tomorrow never comes at least I wore that yellow dress fitting like a glove and those delicious 4 inch heels. I went out feeling like a million dollars. I checked out with a smile knowing I made the right desicion making an effort on that last day. And thanking that trigger happy one-click finger for believing that when it comes to shoes and dresses, too much is never enough…

So naturally I decided to wear my new bodycon black cracker of a sexy number and glam heels to go to St George’s hospital to see my holy consultant Dr B, the pope… Today was a day I was finding out one fate. The sturdy nurse, a female version of brother Tuck, bellowed that clinic was running late. Common in this part of the world. No one sighing and no one vexed though. Just acceptance. Three years down the line here I was yet again awaiting a verdict that could change the playing field. The ticking timebomb that always hangs over all of us in this predicament. Like Cinderellas broken spell would this time be my midnight? Had those little insane cells come back to cause havoc in my other boob or would I be granted more time?

Walking out into the autumnal sun releasing that breath I must unknowingly have held, doing a little Saturday night fever dance for one areas clearance. But the road is a bumpy one and more scans are always needed in other parts of my complex labyrinth of cells. Bone scan and gyno scan next on the list over the next few weeks. The never ending game of getting to any potential little buggers before they have a chance to take hold.

A better version of me is one who knows that nothing can be taken for granted. Nothing. Neither time nor love. You see, too much is never enough.

Soundtrack Too much is never enough, Florence + The Machine https://open.spotify.com/track/58ReVGi4ebvbKyKJ1wvYV0

[preciouslysparkled]

How deep?

After having broken up for summer I am on holiday. Lucky and blessed to have the whole summer off but it’s not without trepidation I have embarked on a long stint of free time. Deep memories die hard.

One of my colleagues I spoke to the other day mentioned something that I had said when I came back from my illness that made him stop and rethink and also feel a bit ashamed. He had complained about coming back to work after a long summer and wanting more time off. I had answered him that I was so glad he was indeed here so we could meet, that for me time off had been turned on its head and that I felt blessed to get another chance to have the ability to work.

That was of course my heart speaking after going through a year of tough treatments and isolation. Now, having been back to work for two years parts of me also need this summer to recuperate and why not starting it off by revisiting my second home, St George’s hospital…

I went back there on Wednesday to meet up with the plastic-fantastic team and discuss result and proceeding from here. The results are so so. As expected my fat cell buddies have had their differences and with the likeness of Brexiteers and Remainders, there were more deciding to leave than to stay… Thus I am back on the waiting list for continuation of my recon boobie…

In between each operation I have had the pleasure of being photographed from every angle at the hospital photographers. A proper photostudio with a lensman in situe for poor sods like me, half battered but in need to let our progression and scars be snapped for the next step in our journey. It’s additionally an important help to medicalstudents as they can be used for training purposes.

-Oh, yes of course. I remember you!

Not knowing wether this is a compliment or another way of saying “you look so horrid  I can’t ever forget you”, is another question… I’ll always go with the positive before proven otherwise, so stripping off I stood proudly in my undies as he set to work. Funny that. When I was a teen I had dreams of modelling. But the only chance I eventually got was after cancer, at the hospital photographers.  Knowing my pics will inevitably help others in a way a regular fashion shoot ever could, deepens the meaning and perception of photography as an art form.

I was right to think positive btw. He loved my tattoo, he later told me. The tattoo that is my testament to a long painful journey but turning into something beautiful at the end.

After my initial Latissimus Dorsi Flap reconstruction I was left with a loooong scar reaching diagonally across the right side of my back where muscle and skin graft had been taken. After about a year of the scar healing and settling I had eagerly awaited the day when I was ready to make this ugly reminder of a scar into a beautiful tribute to my experiences.

Edd, dreadlocks to the waist and body covered litteraly from head to toe in tattoos, designing and freehanding large part of my tat became the vessel to see me through my quest. And what a quest…. If there is something I’m great at is working through pain and although this particular pain was self inflicted, it signified so much more on so many levels. 16 hours, multiple sessions and over two months of going through the pain barrier, bares some resemblance to the depth of meaning.

Having a backpiece done is not for the faint hearted. That I can testify to.  But wether you love or hate tattoos, it was my personal choice and for me it’s not just the ink. It’s the hows and the whys it’s there.

The memories attached are kept real by the motif. Thorns snaking their way up my back. Spreading like a disease with putrid and destruction, crawling and eating through the skin leaving trails of death. But through the thick foliage of suffocating pain, serene rose  buds are pushing their way to the top and breaking out in full bloom, showing that beauty can be found in the ugliest of places. And love. The blooming rose signifying love in its purest form without the doubts and the hurt. A love that isn’t limited and hasn’t got a time restriction. A poetic dream perhaps but nonetheless a reason for being. And that my friends, is why my back is covered in ink with the message of love. A love of life where there is room for you all.

Soundtrack How deep is your love, Bee Gees https://open.spotify.com/track/

[preciouslysparkled]

Where I belong ————————————- Went back to hospital today. Sometimes it’s like a reunion party, maybe not quite… but even so…It’s a place where I feel at home and I know people. It’s one place where I belong. Funny that. In a vast city like London where isolation for many people is a fact, the hospital can become a meeting point of old and new acquaintances. Earphones in and an indie mix urged me on in my John Wayne style of recovery walk…

As I had my surgery exactly a week ago today, I needed to go back and check stitching and change dressings over the wounds. It went well by the way. The surgery. The outcome is to be seen and an ongoing process but I felt good going in to the anesthetics room. I even had a laugh with the anaesatists crammed into the uber sanitised and medically stocked room where they knock you out, saying it was like being on the tube in rush hour…

As one put the needle in my hand the other was getting the different shots of pain relief, anti sickness and anaesthetics  ready and the third was checking my stats. He was astounded that my pulse remained on 60 flat throughout the preparation and cannula insertion. -Well, I had a year and more of cannulas going in and out of my hand, arm and even foot in the chemo ward, so a little one like this is like meeting an old friend is it not?  They smiled at this. -Now, your surgery will be starting with you on your tummy, so don’t be surprised to find your face swollen as it will be placed in a padded face frame…

No kidding. I looked like James’ giant peach in the face when I finally woke up. This time it was of course a male nurse attending my every request in recovery. And a bit of a looker he was… Good sign of health to notice these little things when sick as a dog. But nausea was expected and I did get constant top ups of antisickness through the drip. Five hours later and looking much less like the elephant woman, I was trollied up to Keate ward where I was apparently staying.

However I had other ideas and morphine made me convinced I wanted to go home. My cats need me…So well into the evening when I’d proved to them I could go to the ladies unaided, although hovering and howling like a wolf and a danger to anyone within a five meter radius as I was flinging my arms and swaying as if at sea. Also I managed to eat a yoghurt although I could have made a wall flower out of it, I didn’t, to convince them ET really wants to not only phone but actually go home.

Probably tired of me and well happy to free up one bed I was granted my wish. It had been a long day and as I aided was put to bed, I did feel you Dorothy…There’s no place like home.

So back to today. I met a string of old faces and new. My Macmillan onchology  nurse Charmaine, who genuinely cares, my other Macmillan breast care nurse Alison who said I looked like a poster child for recovery and who else if not Dr B. It was like old times, the four of us talking but this time chatting as close acquaintances rather than medical staff to patient. Another moment to saviour. I also met a new couple sitting in the dreaded sub area B. They were just at the beginning of their journey. A journey filled of pain, bravery, despair, overcomings but also if you’re lucky some laughs and new beginnings. I tried to show this couple that cancer although vile and scary, is not necessarily an immediate death sentence or soul destroying. Only if you let it be.

So on that note, by next week I shall be clawing back as much of my life as I can muster, that’s been on hold. I’ll be back where I belong.

Soundtrack Where I belong, Longfellow https://open.spotify.com/track/6GAAfGpfUyWA685qJzw4O1