“Life is a box of chocolates, Forrest said, “you never know what you are going to get.”
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,
- You are young (nice try I was 52 – BUT young for a lung cancer diagnosis)
- 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.
Commencing 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.
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,
this moment is beautiful and life is sweet.
I pray life is sweet wherever you are.
Pass the chocolates please.