Living beyond fear – part 2

So….where was I?

DCIM101MEDIA

DCIM101MEDIA


Oh yes….I had just finished that enormous serving of vegano gelato, weaving my way back through the delights of Florence, day dreaming about being here with Javier; trying to focus on the outstanding beauty and not the throngs of tourists, most of whom seemed intent on eating. Fortunately my subconscious had ruled out the pizza which seemed to call to me from every street corner!
With the forbidden sweetness of the gelato having elevated my energy levels I could have continued taking in the endless day dreaming about the last time I was here with Javier, wonders of the city; but the truth was I had been awake since 4.30 am on a complicated travel itinerary that included two trains, a plane and two buses. A full day’s activities awaited me tomorrow so time to turn in for the night.
It took a while to finally get to sleep, my mind as always continuing it’s incessant wonderings long after the physical body has called it a day. A few familiar faces appeared in my dreams, but since I no longer keep a daily journal I’m afraid the details have escaped me now. Still – always happy to receive these mysterious encounters as they remind me of the hidden forces at play in my life. (Note to self : resume recording dreams.)

No matter how early I wake, it takes me hours to get through my morning regime which includes the essential juicing, coffee enema, showering, and wound dressing. Since there was precious little room in my case for clothes these days, there would be no time for indecisive dawdling. Long gone are the days of my youth when I could rise up and be ready for the outside world in thirty minutes or so, depending on the occasion. I’ve ceased travelling with a juicer on short trips and replace the fresh juice with a powdered green drink, and can usually manage to fit two concentrated servings of coffee for the enema in a tiny plastic carryon bag allowed for liquids. However, on this journey space was limited what with assorted tincture bottles, homeopathic remedies and iscador injections, let alone the usual toiletries. So………having experienced the horror of coffee leaking all over the place on subsequent trips I had already planned to substitute home-brew with run of the mill hotel coffee – I mean this was Italy – how bad could it be! Yes indeed – after 15 years on the road with cancer, I consider myself a veteran of ‘travel survival tips’. (If you’ve read my book, you may recall that I even managed a coffee enema sitting in the sink of a cabin onboard a ship to Athens. There was just no floor space; and my legs had swelled up like tree trunks. It did the trick as always, preventing the toxic load from damaging my liver). Still – on this occasion it was no easy feat procuring, then juggling the coffee, and enough hot and cold water, with both hands full, and no spare digits to navigate the elevator. In hindsight of course, two trips would have prevented the burns I received on that manoeuvre, but hey…..logic is not my best trait at 6 am in the morning.

Hours later – mission accomplished – and out into the streets I go, map in hand and confident that I can follow the instructions to the Villa Viviani, where Shumei Italia are hosting the 19th EU anniversary and conference on Natural Agriculture. Since it is a special occasion I am wearing a dress, no problem there, but with the ‘lymphoedema’ challenge I decided to purchase some support panty hose, to alleviate and indeed camouflage the wounded appendage or ‘Peggy-leggy’ as I am now referring to it. Seemed like a good decision when I put them on, but now as I slip and slide out of the oversized (on account of bigfoot), but nevertheless sensibly flat footwear, I realise that I am seriously out of practice when it comes to wearing hose. Even at 9 am in the morning, the sun is beating down , and with me shuffling as opposed to striding along I soon realise that perhaps the journey will take a little longer than anticipated. Circling the famed ‘Duomo’, memories take me back a few years to when I succeeded in scaling it’s endless steep staircase for a breath-taking bird’s eye view of this historic city.

DCIM101MEDIA

DCIM101MEDIA


No time to amble now, it’s on to the Plaza San Marco where I have been instructed to catch a bus to the Villa. Having just missed a bus I will no doubt miss the pre- conference Japanese tea tasting, but I’m still in good stead for a timely arrival and can finally relax on the bus after a full morning’s preparation.

So there I was seated successfully on the right bus heading in the right direction….phew! I knew that the journey was to take about 20 minutes, and so with one eye firmly on the electronic screen that notified passengers at each bus stop I allowed myself to observe the fascinating diversity of the experience. I love the way Italians express themselves and with it being a Saturday there was lots of comings and goings to entertain my ever inquisitive mind.

DCIM101MEDIA

DCIM101MEDIA

All was well, until I noticed a young Asian family running for the bus, with the driver pulling off unawares."Arresto,arresto! – stop stop", I bellowed, along with several others, just in the nick of time. In they climbed, the father trying to juggle the bags and belongings of his two tiny daughters, one of whom was tucked under his arm with legs wriggling, and a horrified look on her tiny face as she tried to draw attention to the fact that she had lost one of her shoes in the process. I spotted it just in time and with one more " Arresto! arresto!", the shoe was retrieved and we were off again. "Just like Cinderella", I said trying to calm the little girl and make light of the averted catastrophe. Just like Cinderella indeed I mused, attempting to settle back into my seat, but in that brief encounter I had taken my eye off the ball, and glancing up at the screen I saw Via Gabriele D´annunzio. Already? That was me…."Scuse, scuse", and without a moment's hesitation I was off the bus – phew – that was a quick twenty minutes – now, "where was the Villa Viviani?" After asking a fair amount of passers – by, resorting to speaking in Spanish with an Italian accent, I discovered that I had inadvertently gotten off the bus prematurely. Via Gabriele D'annunzio was indeed a very very long road and apparently I still had three more stops to go. Oh well, shouldn't take me long, and so I continued on. On and on, it seemed forever, and to make matters worse the road was now on the incline – Yep – that's right Uphill. The good news (ha!) was by this point both feet had sufficiently swollen in the heat, enough to prevent my shoes falling off. It wasn't until I had reached the third bus stop with no sign of the Villa Viviani, that the truth set in – there were four more stops to go. Mama Mia! Why, oh why was this happening? No sense in wasting time waiting for another bus that may not come and with no taxi in sight, there was little choice but to continue on foot. I was well outside the city by this point; I could actually see the golden 'duomo', far below.P6250283

Eventually, a bus did come whizzing by, and I made a desperate effort to flag it down, flailing my arms for it to stop. But when the driver apparently failed to see my desperate being, I felt my spirit waiver and tears sprang up through my eyes. Gosh – it had been a long time since I’d had a good cry, I thought, when the tears finally stopped, and I had pulled myself together. Looking up into the far horizon I could see the turrets of a castle, but never did it dawn on me that this indeed was where my feet must carry me. Oblivious to how much further I had to go, the realisation dawned that it was my legs that had carried me thus far….My sad swollen legs that I had been complaining about had indeed carried me up a mountain. And my body, my wonderful body that despite the years of dealing with cancer, had never given up. There was to be no quitting now. People all over the world were in desperate circumstances, and I was but a speck in the scheme of things. The reality was that there was to be no coach and snow white horses to deliver this Cinderella to the ball today, but guess what? I was one of the fortunate ones because I had long ago discovered the resilience of the human spirit.
And so it was that I actually made it to the majestic Villa Viviani with just enough time to drink almost two bottles of San Pelligrino mineral water, splashing the remainder on the ‘boiled lobster’ that had become my face. Moments after taking my seat, heart still beating beyond it’s usual rhythm; the ominous sound of the Japanese Taiko heralded the beginning of a very special gathering.

DCIM100MEDIA

DCIM100MEDIA


Glancing down at the program on my lap I beheld the theme of the event :
Nature’s future has roots in it’s past: Our wish for you to take from this day is a message of hope, to be remembered in each moment of your life. To give us all the courage and strength to build a better future.
Well, I for one would not be forgetting this day. As we began with a silent meditation and ´Jyorei´, the healing light that Shumei is renowned for, I was able to breathe deep with gratitude to be once again in the presence of such like-minded beings. My story takes me back over thirty years now to the time I spent on top of the Japanese mountain, ‘Misono’; such a big part of my life is intertwined with this noble philosophy. Here we all were, from far and wide; friends who have become family, and strangers alike, all intent on sustaining a more natural way of growing and developing food. This was something I had been pioneering, even before cancer had arrived in my body; and now I was more passionate than ever to continue the mission.
DCIM101MEDIA

DCIM101MEDIA

Since it is not my intent here to write in detail about the day’s event, but rather record my ‘body and spirit’s’ movement through it; I must hasten us through, lest it necessitate a ‘part 3.’
With it being the day after the dreaded ‘Brexit’, a lot of the afternoon’s conversation was centered around the continued European unity that Shumei had fostered over the last 19 years. From Japan to America, and then over to the UK and out into the EU, there was a determination to continue dedicating energy to the cultivation of growing crops without chemicals. Lunch then was a fine fayre of produce including ‘natural agriculture’ olive oil, wine, and spelt pasta. Having worked up quite an appetite on the uphill journey I required double helpings, although one glass of the award-winning wine from the Sacrafamila, and a prudent mouthful of dessert was quite sufficient. Sharing a table with both Italian and American friends gave me a chance to relax and debate the unbelievable state of affairs in the political world. Moving on to greet some lovely kimono-clad ladies brought a different sensibility, with lots of laughter at my attempt in remembering long lost Japanese vocabulary, and times long gone by.

DCIM100MEDIA

DCIM100MEDIA


With so many people to meet and greet I could not truly appreciate the beauty of this 13th century villa and it´s surroundings – apparently Mark Twain had lived here for a while.IMG_2961
Later that evening, before exhaustion demanded sleep, I would lie awake re-visiting it all again, the things and the people that inspire me – reflecting on my ‘role’ in it all, my purpose in life; and the things that move me to action. ‘Action’ – that was key – It had all happened so quickly, this decision to come to Italy. But as experience proved to me over and over again – somehow one needed to heed the call of that still small voice when it whispered, “do it….just do it”! Sure, I was still paying off my treatment for last year at the Oasis of Hope, but if I had not taken that action, perhaps I would not be here today, able to keep on moving through it. So – yes, overcoming fear was a constant – and living beyond it…..well that brought in the magic…..and where there was magic, there was the possibility of miracles.P1140872
And so…time to load up my trusty suitcase for yet another train journey to Umbria where my dear old friend Michelle and her faithful dogs are waiting to welcome me back to their very special home; and with the anticipation of meeting the microsurgeon, Dr.Paolo Gennaro I foresee a part three on the horizon. Arrividerci Firenze.
To be continued…..

Living Beyond the Fear – part one

Given that my last personal update was December 2015; there is as usual much to say. However these past months have been more about reflection and rest, and a need to be ‘under the radar’. True – I have been focussing energies on my dear Javier’s health and glad to say that after months of excruciating pain he finally was able to have his prostate removed and is healing well. Fortunately there was no cancer involved; but certainly a fearful situation in anybody’s life. With us both being in our mid-sixties now, we are perhaps brought closer than ever through these experiences and how they affect our life together. Indeed, ours is no ordinary relationship, and given that we met when we were a mere 18 years old, I am grateful now that through these ups, downs and distances, a deeper understanding and respect continues to cultivate love.

When I published my book AND SO WE HEAL in 2009, it very much dealt with the emotional journey of a cancer diagnosis, as I was called upon to unravel the toxic mass inside my being. At the last minute I had changed the title from AND WE SHALL HEAL, as I felt that it implied healing was something to aspire to in the future, whereas the ‘And So We Heal’, refers to something in the ´now´. Since I was in the process of writing a love story when I was diagnosed with breast cancer in 2001; the book continued to be exactly that, and so much more. Indeed – it is that ‘so much more’, that continues to capture my interest. Nothing’s changed there then….so let us press on with fingers tap tapping away to see what my subconscious hauls to the surface to share as we move into August.
It is exactly one year ago now that I made the monumental journey to THE OASIS OF HOPE hospital in Tijuana Mexico (www.oasisofhope.com). I’ve written extensively about that in past posts; and am delighted to say that just as promised the doctors have continued to monitor my progress by continually keeping in touch. I would dearly love to be able to hop back over there for a tune-up but as always finances have to be considered. However, I was able to attend the TOGETHER AGAINST CANCER conference in Leicester in June where as usual the dedicated Dr. Contreras from Oasis was speaking,

DCIM100MEDIA

amongst other caring professionals who are bridging the gap with integrative oncology. The always passionate Dr. Dana Flavin, springs to mind.
Part of the reason I have not been writing too much lately is also due to the fact that I have been using my time to research; especially since the ladies and gentlemen of my favourite cancer forum – CANCERUCAN (Face book)- seem to have most subjects covered when it comes to caring and sharing the latest groundbreaking knowledge.
As per usual my research usually springs from a desire to rectify a situation in my own personal body, and this is where Divine intervention comes into play. Our minds are perhaps the crown jewel in this cancer equation – ‘ask and ye shall find’. So when one of my legs suddenly started to swell it was time to do some investigating. I had recently changed oncologists and what with this past year’s addition of letrozole and metmorfin to my regime I was anxious to rule out possible side effects. I seem to be doing quite well on these two pharmaceuticals, especially given the fact that I’ve survived years without them; but as I said before I am happy to be on the integrative road.
Almost immediately the first ‘bell of intuitivism'(I like the sound of that!) went off with the word ‘LYMPHOEDEMA’ ringing in my ear. It’s usually the ladies who have mastectomies and lymph node removal that can be afflicted with this condition, usually in the arms. Apparently it can happen many years later. In my case however, I had not had lymph nodes removed but they had become compromised over the years especially on my upper right side, and my right groin which of course could be the reason. My oncologist didn’t seem too concerned but sent me off for an ultrasound DOPPLA investigation to rule out blood clots. Heaven forbid I would have to stop flying, now that Javier and I are very much dependent on being part of our native health systems. But no….there seemed to be a normal flow of blood through the veins in the leg and since the latest CT scan showed no further spread to bones, lungs or other vital organs I was considered stable. Of course I am still with chest wall progression; but STABLE is a word I can live with………….It’s not exactly the kind of stable I had had in mind as a young girl dreaming of her own horse; but a sacrifice I can now live with given the tremendous upkeep of such an animal.
And so……whilst I was put on a long waiting list to attend a lymphoedema clinic where the only treatment would be a lifetime of wrapping the affected limb in compression garments; I began to research the condition. With my leg continuing to swell up for most of the day then almost back to normal by morning, and with relief if the limb was elevated, I was, according to the statistics at stage 2. Once you got to stage 4 you were considered to have elephantitis and believe me looking at some of the photos available about this condition, and hearing some of the heart-wrenching stories I was filled with compassion. The lymph system is very much overlooked in the grand scheme of things – Up to 10 million Americans and hundreds of millions worldwide suffer from lymphoedema. It will occur in up to 50% of breast cancer survivors, and 100% of those with head and neck cancer. Lymphoedema is caused when your lymph nodes are taken out or damaged, usually when treating someone for cancer. This leads to the blockage of lymph fluid, which causes swelling in the arms, chest or legs. Lymph is the fluid responsible for discarding bacteria and bodily waste from tissues. I have always had a sluggish circulation especially with my lower limbs, and being diagnosed with cancer actually helped me to address my whole body and take measures to move the lymph fluid with dry skin brushing, excercise and herbs. There was no pain yet, but the danger came if I wounded the site in any way leading to cellulites and infection – I’d seen that with my mother’s leg when she was in her 80’s.
I was determined to continue living with or without the cancer, but suddenly my mind had to allow for unforeseen events. Looking at some of the lymphoedema sites I realised I was ahead of the game at least with my health regime. Not only were these people being told there was no cure but also that diet had very little to do with their condition and so it was evident that there was a lot of comfort eating going on. Much the same as in the old days when the establishment told us that diet had no bearing on cancer! Some people were house bound and so it was a perpetual cycle that fed their circumstances. And to add to the confusion, the word LIPOEDEMA sprang up which is an hereditary condition affecting millions worldwide – one may have actually been born with a faulty lymphatic system! The plot thickened as I recalled my teenage years with legs swollen blue and red in the winter months but the GP not addressing the situation. I had grown out of that phase but was always prone to leg swelling especially in hot weather, and if truth be told – for years I hated my legs. Being diagnosed with breast cancer was a shock yes, but it taught me to love myself, legs and all, and the years have brought me a life of miraculous wonder, despite what it has done to my physical body….
…And so the good news was, that by putting my foot down (no pun intended) by refusing to believe that there was no hope; I was allowed entry into the wonderful world of scientific advancement. One only has to google that –scientific advancement for lymphoedema to discover that for years now scientists have been proving that there are indeed solutions. Microsurgery and lymph node transfers are being done around the world, and were up until a few years ago available on the NHS. Not any more however, except in Wales apparently, where one has a chance to receive microsurgery with the NHS because of a grant. Almost worth moving to Wales, and don’t think I haven’t thought about it. If one has the money to pay privately there are a handful of good doctors at our disposal. Somewhere along the line the world of ‘lymph’ has been downgraded as not that important apparently but read further and one can find an uprising of the people….the Lymphies as they are lovingly known. There is lots of information at the Lymphoedema Support Network…
People are marching in the USA to draw awareness to this condition and a march coming up this September in London. The actress Kathy Bates is the poster child for the Lymphatic Education & Research Network (LE&RN) in the USA.
Still, with all this information I was uncovering, the fact remained that despite all the work I was doing to help my leg; unless I had a pot of gold, the condition would only worsen over time. One of the ladies at Cancerucan, Jane McLelland who also runs another forum (Off-label drugs for cancer ) had recently paid privately for a lymph node transfer, and admitted that it was a long journey even then to see results. The searching continued, finding blogs and forums of folk who were in varying degrees members of the ‘Lymphies’, and I became more determined than ever.
In the meantime, another example of how Divine providence works –
I was due to attend a conference in Florence on Natural Agriculture run by my long standing connection with the spiritual fellowship of ‘Shumei’, but due to the complications with my leg Ihad doubts as to whether such a journey was wise. Europe was in the midst of a heatwave after all. I booked a very cheap flight anyway with the added temptation of visiting a dear American friend living in Umbria, whom I hadn’t seen in years; leaving it up to fate and my general welbeing on the actual day. Continuing with my research, bells went off as I came across the names of two Italian doctors working with microsurgery and other treatments for lymphoedema, and before I knew it fate had me on that flight to Italy, arriving hours after the Brexit vote to leave the EU. Mama mia…..What on earth was happening in the world? To say I was in a state of shock is putting it mildly.

The good news was that my leg did not blow up en route, and despite the unbearable heat I managed to hobble my way through the cobbled streets of Florence, clickety click clicking my poor battered suitcase behind me. It was crammed full of vitamins, dressings, pills, potions,and healthy snacks but alas nothing could tempt my mind away from the ever-present gelato ice-cream which called to me from every corner. I had certainly packed enough healthy food alternatives as per usual so as not to be seduced by the local off limit delicacies. I had even baked a large ‘brick’ of ‘life-changing bread’ so that my cravings for local baking would be met head on; but ice-cream was an all time favourite which at least at home I could make dairy free, or binge occassionally on Booja Booja. And what about the cheese? – dear God – at least I had the vegan alternative at home but how long could I resist a slice of pizza for God’s sake? Luckily I had eaten well along the way with homemade fayre, hummus, veggie delights and nuts etc; even an avocado had made it intact, but alas the brocolli sprouts I had started a few days earlier to see me through, met a premature death in the heat. I knew at least that the following day’s conference being all about healthy eating would feed body and soul.

So….never mind eh…..this too would pass, and by the time I reached the hotel, my body just wanted a lie down. Drawing back the curtains I was inspired by the view of the top of the familiar ‘Duomo’ in the distance, and across the way a beautiful stained glass window depicting a madonna in the throws of exctasy….perhaps she too had been fantascising on forbidden fruit or gelato. As if on cue the bells began to sound a timeless welcome, and with that I made a choice to let my guard down and trust that all the food presented to me during my stay in Italy would serve to feed my soul. If all that stood before me and my demise was the enjoyment of a divine gelato, then so be it. After resting my bones and zipping my legs into portable compression boots to help the lymph flow, out I went to check on my surroundings. Surprise surprise, there below my hotel was a gelato shop with GELATO VEGANO…..You got it – vegan gelato…..mama mia!!! OK so the high sweet content was another issue, but what the heck – I’m sure the ‘when in Rome do as the Romans do’works just as well in Firenze! And so it was I indulged in the divine rapture of gelato vegano wishing it would never end; but when it did I continued counting my blessings and enjoyed a stroll as the sun set finding myself at the Ponte Vecchio remembering being there with Javier………He was never far from my thoughts as always…..

DCIM101MEDIA

The journey continues in part 2