Life is Like a Box of Chocolates

“Life is a box of chocolates, Forrest said, “you never know what you are going to get.”

life is like

I couldn’t agree more. These words have been dancing around my head for some weeks now. A reflection of just how life has been these last few months. Many describe the experience of cancer as a roller coaster. I’ve always said that I’ve never been a fan at the best of times: gut-wrenching-stomach-turning fear at 60 mph on a bone-rattling metal serpent is not my idea of a good time. A screaming out-of-control hair-lashing hand-flailing adrenalin rush, no thank you – pass the chocolates please. Though one good thing about the roller coaster. It does eventually grind to a teeth-clenching halt and you can disembark. Not so with cancer, stage 4. No getting off. No candy floss. No hook-a-duck.

So back to the chocolates – cancer is like a box of chocolates – you never know what you’re going to get. Rewinding a few months, some bugger had snaffled all the good ones, and all I was left with was a few stale, half chewed nut clusters that nobody wants and sad empty wrappers. In other words, life was proving a wee bit challenging to say the least both physically and emotionally. Actually, who am I trying to kid? It was a dark time. A difficult time. It seemed as if the way forward was closing. My wonderful, supportive, highly experienced and eminent NHS oncology team for whom I have the greatest respect and gratitude, and who have been with me every step of this journey for the last 18 months advised me to go home, spend time with my loved ones, set my affairs in order and make contact with Macmillan home support ASAP. There was no more treatment they could find to offer at the moment. Maybe I would find a trial. Maybe. Regrettably though, from their perspective, and more crucially mine, our journey together looked like it could be drawing to an end soon.

It took a while for the significance of the situation to truly sink in.

IS THAT IT???

Do I just go home and WAIT …? To DIE …….?

When hope is snatched from you, it is so, so hard to know how to continue, how to be, who to be, how to live. What’s the point? Fear seeps in through the cracks and eats away at the spirit. Despair becomes your bedfellow. Waking is a nightmare, yet sleep never comes. Guilt walks in your footsteps, every time you witness the pain and sadness in the eyes of your loved ones having to endure this terror with you. Injustice justifies your anger and your grief. Why fight when you have been told there is nothing left to fight for? You cannot undo the inevitable. You have been told there is nothing more that can be done. I’m so so sorry. Now, where have I heard that before? Oh, yes, on diagnosis. I do WISH people would stop apologising to me. It’s not your fault. And believe me, you ain’t as sorry as I am! The medical establishment, and I mean this with no disrespect, have decreed that NOTHING MORE CAN BE DONE within the pathways and protocols currently available via the NHS. (Well more palliative chemo could potentially be on offer, but they know my feelings on that.) In the lung cancer vs science battle, there’s only one winner. And it isn’t going to be me.

With each day that passed, physical distress and discomfort was matched by escalating mental and emotional distress. For the first time since I was diagnosed the insidious canine of depression was curling up in my heart.

And then, one day, out of the blue I had a realisation: I had bought into “the fear”. Cancer adorns itself in fear, and dealing with fear and its impact on one’s mental, spiritual, physical and emotional wellbeing is one of the biggest hurdles that a person diagnosed with cancer has to overcome. Cancer breeds fear. And fear is contagious. Fear disempowers. Fear renders us helpless. Fear makes us question our own mind, beliefs and instincts. Fear is heavy – it crushes us and restrains us. Fear builds a prison around us. Fear is like a thief in the night, it steals hope. No one is immune to fear.  Not even the medical experts. They are human after all.  I saw fear on their faces, a fear that they couldn’t do more to help; I felt it, I smelled it on their breath, I saw it in their eyes, and I swallowed it and gave it permission to swallow me.

Until I saw it standing there in the shadows. And I chose to reject it.

If I feel fear, let it be my own. Then I can seek to understand it, and develop my own relationship with it. Fear does not merely diminish, on some level it serves to protect us. It can motivate and help us to dig deep into our resources. The Fight or flight response of the sympathetic nervous system demonstrates that. But, let me not be bowed and broken by the burden of other people’s projection of fear at my situation, not family, not friend, not practitioner. Allow me to take ownership. To steer this in the direction I need to travel. Let me break free from the bonds of personal and collective limiting beliefs that are unable to acknowledge that the incurable could be curable, the impossible achievable, and deny us the fierce grace of our untapped human potential.

Unintentionally, the manner in which I was seemingly being released from the care of a team whom I trust and respect and of whom I have become fond and who have become fond of me, caused incredible distress and panic, and depression set in. As well as having to deal with a real physical illness, I was now combatting mental dis-ease. How delicate news is passed from practitioner to patient is undoubtedly no easy task. We are all different, we will all respond differently. Some may prefer a sympathetic approach, others a more pragmatic stance. But, having been the recipient of devastating news on several occasions, I recall the words from the Hippocratic Oath: first do no harm. I suspect that this oath is interpreted primarily in physical and physiological terms. However, I would strongly argue that health practitioners cannot underestimate or neglect the psychological impact that their words and demeanour have on a patient. Us patients are not merely slabs of meat. A more holistic, inclusive approach is required, we cannot continue to separate body from mind from spirit. I strongly believe that our physical wellness is entwined and interacts with our mental and emotional wellbeing. I would go so far as to say that physical dis-ease can originate in the psycho-spiritual realms. Personally, I have no doubt that certain distressing and devastating life events in my own experience subsequently translated themselves into the cancer I experience today.

If I cast my mind back to the day of my diagnosis, the young woman tasked with passing on the news came armed with pity. And pity, is something else which I find at best futile and at worst offensive. Pity from others is another disempowering sentiment. It casts one in the role of victim. It breeds self-pity, which now and again serves as a necessary release, but as an on-going state encourages passivity and helplessness. News delivered, she left me alone in an empty room with an appointment to see the oncologist, my future in shreds, all hope extinguished, trying to digest the undigestable.

Five minutes later, a Sister came in.

“I’m going to say three things, she told me,

  1. You are young (nice try I was 52 – BUT young for a lung cancer diagnosis)
  2. You are healthy  (Seriously? I just got diagnosed with stage 4 lung cancer – but OK, apart from that she was right, I am strong, fit and have hardly ever been ill.)

And 3. You have your yoga. (Bingo, a rich spiritual life that inspires me, nourishes me and teaches me to look at life from a different perspective)

And, just like that, she gave me something so precious, so profound, so wise – she gave me back hope. And hope gave me back my power, just a little bit, but enough.

The second century doctor Galen held that “confidence and hope do more good than physic”. I couldn’t agree more. And if the medical professionals can’t see, or more crucially are afraid to trust in the positive power of hope, so fearful these days are they of proffering ‘false’ hope then I shall go searching for it myself. I shall create it myself. The first and last thing a patient holds on to is, Hope. And it is a person’s confidence, their belief in whatever healing is offered which can influence the positive outcome of their treatment. How else would placebo be so efficacious?

I have maintained right from the beginning of this journey, that we are the alchemists of our own healing. And I will only heal, if I chose to heal. And believe I can heal. Time to step up. Take command. Time to think outside the box, expand my consciousness of possibility to beyond the scientifically proven and statistical. Time to concoct my own Medicine. And believe that it is possible that by being open to different ways of healing you can influence the outcome and make a difference. That you can defy expectation. That you can achieve what is deemed impossible. Why not? What is there to lose? What is there to fear? To fail is not to try. To try is to succeed. Be here Now.

So I had the dog put down. Churchill’s black dog, that is. And, breathless as I was, unable to walk far as I was, recovering from operations as I was, I made a vow. NOT to buy into other people’s fear, no matter who or how expert they are. I vowed to participate as much as possible in the things that I love and that inspire me. I vowed to believe that something good is coming, however crazy that sounds. To believe in miracles. To never give up hope. To expand beyond my own limiting beliefs and the limiting beliefs held by the collective. I chose to believe in the power and potential of what Hippocrates describes as “the natural healing force within”.

I opened myself to the possibility of the impossible, and then, something amazing happened, the universe began to listen and respond. After two failed attempts to get on a trial (talk about being given false hope!) – third time lucky – I was accepted. Early stage trial, I feel I am of marginally higher status than a rodent, but it welcomes hope back into the room. And, yes please, I’ll take that.

 

st winifredCommencing the trial has coincided with a whole new chapter, a summer of adventure, joy and healing, woven together by a daily pilgrimage in celebration and gratitude for life. The journey first took me to Wales, where I chose to celebrate and give thanks for my birthday and my life at the sacred healing waters of St Winifred’s Well in Holywell. The Lourdes of Wales. Where, so they say, miracles happen. It was an opportunity to immerse in prayer and focus strong intention for the year ahead. And immerse ourselves we did – literally! three times, in the freezing mountain waters! Wow Wow Wow!

 

Did it work? Am I cured? I don’t know, but all I can say is that each day, little by little I feel better and better. I feel blessed.

As the days and weeks have progressed my strength and vitality have improved daily on a diet of spiritual nourishment, all night out-door ceremony, community, friendships old, friendships new, family, magical Mexican healings, hot sweaty camping, prayers of gratitude, prayers for the Earth, gathering around the fire with indigenous elders, dancing with the deer, feeding the soul, feeding the spirit, teaching in circle, learning in circle, introducing Marakames (indigenous Mexican shaman) to the delights of kebabs and fish and chips, feeding my belly with the womb food of my childhood days spent on the streets of Singapore, late night hammock star gazing, and trip upon trip to London to participate in the trial, and a huge thank you to everyone on the ward who make the process so easy to bear.        All mixed together in my cauldron of healing, bound together with a strong vision of the future I desire for myself and conspire to manifest.

 

411px-The_magic_circle,_by_John_William_Waterhouse (1)

All of this is medicine: My medicine. I believe in the power of spirit, plant, mind and medical.

Next week a scan will tell me the status of the cancer: same, better or worse? The result will determine whether or not I am allowed to continue on the trial. So, now I must consciously chose not to succumb to what we like to call scanxiety – the creeping terror of what ifs.

Because, judging solely on how I am feeling right now, on my quality of life, my physical robustness, my reserves of energy, my optimism, all of which improve every day and have transformed me from the person I was less than two months ago who was struggling to breathe or walk– I feel AMAZING. And I’ll take that. Some magical alchemy is at play, something is working. For all I know the trial could be giving me a placebo. Who knows, who cares? I believe it is going to work, just as I believe that the ancient traditional healing methods of the Wixarika marakames (indigenous Mexican shaman) will work, just as I believe that my mind is a powerful medicine, just as I believe in the power of plants to heal, or the power of the prayers people have been saying for me. I believe that there are ways to healing that we in modern western society as yet do not fully understand. Or perhaps we have forgotten. The light of hope still shines when I look at the horizon, long after the sun has set on the conventional medical establishment’s options.

All I know is that right here, right now,         IMG_3323

this moment is beautiful and life is sweet.

I pray life is sweet wherever you are.

Pass the chocolates please.

3 Ways of Healing – #Medical

butterfly 2

Perhaps if I had been born in another time, another country, another town, in another family, with another name and the planets had aligned in the heavens in a different configuration, then maybe none if this would have happened. I would not be the person I believe myself to be. When I look in the mirror who would I see? Perhaps I am him, or her. Perhaps I am you. My life would have followed another path with another story,  a different set of characters, setting and plot.  A different beginning, middle and end. Not better nor worse, who’s to say. Just different.

Perhaps in the thread of time, one decision made differently, a glance in an alternate direction, a no instead of yes. A hello and not good bye. And  perhaps I wouldn’t now be perching on the side of the bed, and not for the first time this month, head resting on a pile of pillows, with a needle and catheter inserted into my back between my 3rd and  4th ribs draining what will be a litre of fluid from the pleural lining of my lung. Another litre of fluid. That’s three litres  in the last six weeks so far. There’s more yet to come, but that is in the future, a life not yet lived and breathed.

canute_beach

I am awash with fluid. Water water everywhere so the saying goes. I am like Canute raging  against an incessant and unremitting tide. Impotent and futile against the power of nature and the elements. The lungs, according to Chinese medicine represent grief, and as the sea of sickness seeps from my body drop by drop I feel the release of decades of grief held vice-close, of sadness, of fear, of shame, of guilt, of secrets, of abuse, of self blame, wrong choices, missed opportunities, isolation and silence.                                                                                             Oh the silence is deafening now,  drowning out the white noise that butts and rasps and rattles in my head like a hornet trapped and angered. A pestilent and painful reminder that I too am trapped, that I too am pestilent. Looking out upon the life I want to have that lies beyond my reach. Out of my grasp. On the other side of the glass. Slipping through my fingers. Nothing to do but surrender, be here now, allow the grief to subside like a receding tide, when all is revealed and I can breathe again.

Forty minutes and three coughs later and I am done. The cause of this, my latest incapacitation, the breathlessness, the palpitations, the discomfort, pain and physical restriction when life is reduced to a corner of the sofa and dependency on others, lies malignantly in a plastic bag upon a metal trolley, not yet for discarding, but for analysis, searching for more clues in the crime of my disease.

Beside me, Dr H. wraps things up with a manner at once professional, friendly and endlessly reassuring. We have  met several times over the last year,  despite  my best intentions not to, and  he maintains  an easy dialogue throughout the  procedures that both distracts and normalises this most un-normal of circumstances. As bedside manners go, he rates a 10/10. As I think it, I hear the words fly clean out of my mouth and into his ears.

Drain removed, plaster applied, all swabbed clean and tidy a thank you to the team and I am wheeled from day theatre down the corridor to recovery before the next victim, sorry, patient is wheeled in. Recovery consists of spaces for four patients and Eric* the nurse in charge.

“Hello again” I say

“Hello again you” he replies. “Back again? How are we today? Can I get to a drink of water?”

His accent places him in the region of the Philippines. Like so many of his NHS colleagues I have had the good fortune to meet, who come from South East Asia, Thailand,  Africa, the West Indies,  eastern Europe,  Spain, Greece, India,  China, Hong Kong,  I am grateful he made the journey to work here, healing the sick of Great Britain. Clearly we cannot sustain this great and wonderful institution alone. Our global friends are a intrinsic to its health. And for all our sakes the NHS, needs saving, before the disease of neglect and lack of funding and secretive selling off kills it off once and for all. Where would we be, where would I be without it? Not here and now, that’s for sure.

Eric turns the monitor so I can monitor myself. My oxygen sats read 92, I know they won’t want to let me go until they each around 98. Eric remembers I like a challenge! Tentatively I begin to deepen my breath, lung slowly re-inflating for the first time in weeks, like a butterfly unfurling from cocoon, spreading my wings, come on, come on, I will myself,  that’s it, 93, 94, you can do it. Heart rate is starting to come down from over 100 bpm, it has felt like a runaway train the last few weeks, even when stationary. Is this what it’s like to feel human again? I’m  almost scared to remember.

Eric bustles back with a poly cup of water, de- licious.  He sings quietly under his breath to the retro tunes whispering forth from the radio, to my amusement,  he really does seem to know every song.

“You missed your true calling” I joke, humour returning in equal measure to breath.

“I think  you’re right” he laughs

Dr H. Pops by to check up on me just as my sats reach 98. Job done we both agree.

“No offense,”  I say, “but I hope we don’t meet again for  very long time,”

He smiles, as I have said this very sentence on several occasions over the last year. What I really mean, is thank you thank you thank you. Thank you for making me feel so much better. Thank you for the gift of modern technology, science  and medicine that found its way from you to me and means I am not drowning in my own water, but alive and kicking. Thank you all from the bottom of my heart. He departs taking my gratitude with him, radiating 10 out of 10

“OK young lady, you’re looking good, home I think.” Says Eric

“Yes please,” I say to no one but myself.

A new song starts up on the radio, Eric sings along,

“At first I was afraid I was petrified,

La la la Laa  la la la Laa la la la lala laaa….”

HEY! Wait for me Gloria, I’m just putting my skates on,

You sing it girl, you sing it loud. And she does ,

“I will survive! Hey Heeeeey!”

And with that I pirouette into the corridor and back into my life.

butterfly

(c) Leah Bracknell

*name changed

Butterfly photographs: Seb Janiak

Cancer Care in the UK – what’s the prognosis?

tessaCancer is more than just a disease it’s political. Yesterday, when former member of parliament and cabinet minister, Dame Tessa Jowell, herself diagnosed with brain cancer and seriously ill, addressed her peers with a deeply honest and moving account of what it is like standing on the front line fighting for your life, we know it’s beyond crisis. That she feels the necessity to address the issue of cancer care in the UK in 2018, at this stage of her life speaks volumes about the urgency of the critical situation in which we now find ourselves.

Dame Tessa reiterated the alarming statistic that we in the UK, have the worst survival rate for cancer in Western Europe, due in part because diagnosis in cancer is too slow.

I know this to be true from first hand experience – I spoke to 4 GPs in the ten days before I was rushed to A and E in an ambulance. I had had blood tests,  and x-rays, couldn’t breathe easily, was struggling with acute swelling and bloating of the abdomen, but the alarming truth of the matter is the system is bursting at the seams. I was literally dying, and almost did, but the urgency of the situation was completely missed. Even now, receiving treatment at a cutting edge NHS cancer centre, urgent scans are taking up to 3 weeks to come back due to the severe shortage of qualified radiographers.

That the NHS is itself struggling to survive escapes no one. I pray that it is not terminal. But I strongly suspect that those who hold influence in these matters lack the will to offer the NHS even palliative care, let alone investment that would be served with a curative intent.

There is inequality across the regions as to what treatments and protocols are available. At my first hospital, local to my area, I was  offered only a few rounds of palliative chemotherapy for my advanced stage 4 lung cancer. To clarify, palliative care means end of the line – symptom control, and hopefully some life extension, the doctors don’t have any more options available to them, they are not giving the treatment with an intent to cure, only as a means of aiding “quality of life”. Though surely that is subjective, and not a matter of statistic.

I had to move hospitals and now travel a five hour round trip to meet with my brilliant, supportive NHS oncological team. Who do their utmost to source and offer treatment pathways denied me initially. Believe me, it’s not ideal. But it is how it is. And I am grateful, eternally.

Last week, I was shocked to see on the news that the Churchill Hospital in Oxford, due to acute staff shortages, out of desperation  was considering delaying chemotherapy treatment by up to four weeks, and reducing the number of rounds of palliative care offered.

Imagine this, a scenario in which you have been told that you have incurable, advanced stage cancer, and all the fear, worry, stress and anxiety that in itself arouses and add to that, the terrifying possibility of literally and effectively being told to go home and wait to die, because the funding crisis and the resultant staff shortages cannot meet demand.

Is it the cancer equivilent of “Do Not Resussitate”?

That Theresa May can say last week, and I quote,

“It’s a first class National Health Service, that has been identified as the number one health system in the world”

seems delusional, is untruthful and therefore for the millions like myself dependent on it for end of life care, unspeakably offensive.

Tessa Jowell personally, and not doubt professionally and politically understands the challenges of getting the message to land at the feet of the right people, and for them to hear it, and then for them to have the WILL to address it.

She recognises that what cancer patients want and need is ” to know that the best and latest science is being used for them”.

From personal experience, it is profoundly frustrating to know that treatments are available globally from which we may benefit, yet are inaccessible here in the UK due to funding limitations, not just because of a budgeting crisis here but due to the criminally exorbitant cost that pharmaceutical companies demand for their life saving and potentially life lengthening drugs.

She highlights the necessity for collaboration and communication across the global cancer health care community, between service users and doctors alike, that we learn from one another.

Below are  the three main points she highlighted in relation to the Eliminate Cancer Initiative which is initially focussing on brain cancer, but I feel is a universal necessity:

  1.  Link patients and doctors across the world in a clinical trial network.
  2.  Speed up the use of active trials.
  3.  Build a global data base to improve research and patient care.

Dame Jowell spoke of giving hope to others in her situation. And, let me tell you, it often seems in short supply, the medical establishment are very wary, unsurprisingly of anything that may be deemed “false” hope. In fact, when you are diagnosed with stage 4 cancer, hope is essentially deleted from your vocabulary. It becomes a dirty word. But like I always say, lucky I have dirty mind!

“We must accept finite disappointment, but never lose infinite hope.”                  Martin Luther King Jnr

hope2

I hope that Theresa May and Jeremy Hunt really heard what Tessa Jowell had to say, that it isn’t dismissed with a derogatory statement of pacification or a stubborn dismissal of the bleeding obvious, which is that the NHS, is sadly no longer the first class service most of us wish it to be.

I don’t want to see Jeremy Hunt, jacket off, sleeves rolled up a la Cameron in a gesture to us mere mortals that he’s one of us, strolling around wards and hospitals wearing an expression of faux concern. I’d like to see him face to face with people like me living life on the edge of the cliff, staring into the abyss, a service user. People who know what it’s really like. Telling it how it really is.

Because we are not just statistics, to be manipulated, we are not just names called out across the waiting room, we are living breathing feeling human beings, who want to carry on doing just that for a little while longer.

I pray with all my heart that the NHS receives the life saving treatment it needs, so that we, all of us, might receive the life saving treatments that we need.

I give my deepest thanks to Dame Tessa Jowell for speaking as she did on behalf of us all, and I sincerely wish her well. She brought the house of Lords to tears, the headlines say. But it’s not tears we need. It’s action. And I give my deepest thanks too, to those working under such unforgiving and relentless pressure within the NHS to make our lives a little easier.

“Let us live well with cancer . . . not just die of it.” Tessa Jowell January 25th 2018.

Watch Tessa Jowell’s speech in the Lords here.                                https://www.youtube.com/watch?v=E82hJ9CwJh0