Take Me Back to Normal

What is it they say? If you want to make God laugh tell her your plans? Well, I hope someone up there is laughing because I certainly am not. I am fed up. Actually that’s F.E.D. U.P. with a good half a dozen exclamation marks for emphasis. (!!!!!!!!) For fear of seeming to contradict more upbeat and positive blogs that I have written in the past, it would be disingenuous of me not to express the flip side. Living with stage four cancer is not black and white, we cannot always be the noble and exceptional patient nor are we always self-pitying and woe-is-me. Life on this path is far more nuanced see-sawing somewhere between the two; there are sunny days and there are days when dark clouds glower ominously and oppressively. To sum up, I am fed up of being fed up. And I’d like a break please.

Having a moan and a whinge does not come without a sizable chunk of guilt. I know there are people out there who are enduring much worse circumstances than I. I know that I have a great deal about which to be grateful. But that little part of me that is feeling sorry for myself just wants to be seen and heard. She wants to jump up and down shouting “It’s not fair” “I want my life back” “I want to feel normal again”.

Normal – now what does that mean? I suppose to me, now, it means not having the state of your health on your mind, or at least lurking around the periphery 24/7. It means maintaining one’s independence, not having to rely on people in order to complete simple functions that you once took for granted. It means being able to make plans without first consulting the diary to see whether you are due to attend hospital appointments. Not wincing when others tell you of their plans for later in the year, and your mind finds itself begging the question, will I have the luxury of even being here later in the year? Simple stuff – driving, walking, breathing. It’d be nice to do those with ease again.

October was the last time I remember normal. I made a six hour journey by public transport to Devon to see my wonderful friends “the poncho fairies” where I was spoilt rotten, and we enjoyed mooching around Totnes, eating naughty cream teas (I’m told it’s the law in Devon!) and strolling on Dartmoor in search of cairns and ancient stones and piskies. Of the latter we did actually spy one.

That slice of heaven was followed by a spontaneous trip with my husband across the channel to Brittany in the van where we ended up at St Malo, an old corsair town. To walk around its ramparts, or explore inside the city walls feels like stepping back in time. However, the town itself was almost completely destroyed during the second world war but was painstakingly and lovingly rebuilt in its original style. We filled our bellies with mussels, chugged around the town on le petit train, marvelled at the beautiful light cast by the stained-glass window in the cathedral, and I even got to indulge my literary nerdiness and walk in the steps of Marie -Laure the young heroine of “All the Light We Cannot See” by Anthony Doerr, the best book I read all year.

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From St Malo we headed south west towards Carnac, detouring briefly at Monteneuf where there are some truly spectacular huggable ancient stones, if that’s your thing. Carnac was impressive in a different way due to the sheer number of stones laid out, there are thousands. Like Stonehenge, the more sacred ones are cordoned off from the public, to the annoyance of many who believe that they belong to everyone, but most stones are quite happy to be photographed, kissed and hugged by anyone who has the urge.

We discovered a stone burial chamber – 5000 BC the Tumulus de Kercado incongruously tucked away behind a Franco-Indian restaurant in the middle of nowhere. It would be fair to say that both were interesting in their own way.

As I write about those times, I recall the joy, the delight of getting out and about, worries pushed to the back of my mind, and the sheer bliss of normality. On returning to England, and re-entering the routine of treatment in London, life took a little turn off course, and rather than being allowed to return home, I was admitted immediately via A and E to a ward where I was treated for an infection, (I had been hacking away in France but thought that I’d shake it off no problem, just like the good old days) and slightly more seriously to prevent sepsis, for which I was borderline.

About my stay, I will say that I had a great view of the London skyline for Guy Fawkes night. I also discovered the delights of Deliveroo for the very first time, who actually deliver to your ward. I was gobsmacked and impressed. Also hugely relieved that I didn’t have to endure anymore of the sinisterly glistening and unidentifiable substances served up to me on a plate embarrassingly described as “food”. Why, why is it, that the food served up to people when they are at their most physically vulnerable is of the lowest possible quality? They can attempt to fool and seduce you with glossy laminated menus, elaborately describing meals to tickle your palate and make your mouth water. But the reality is a huge and unhealthy disappointment. During a recent stay in hospital, I ordered fishfingers and chips. Please don’t have a go, my appetite was zero and I was losing weight so figured how can you go possibly go wrong with a childhood favourite? More fool me. When it arrived, in its tepid post-microwaved state, I was disturbed to discover that my meal was actually sweating.

Please can someone consider improving the food that we deliver to our sick, and remember that healthy nourishment is a priority.

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I have digressed. Diverting my whinge into NHS meals. So, I was discharged from London, only to be readmitted a few days later nearer home. This time I barely bothered telling friends and family, I was getting bored of it, so I figured they would be too. It took longer than I would have liked to get my strength back, something which frustrates me like mad. Life is short and precious and I want to be up and running ASAP, not hobbling around all weak and feeble. At the end of November, I undertook my first major outing in a month and attended a charity function at the House of Commons. And following that my health seemed to find balance again and I enjoyed two whole weeks of near normal activity, slowly getting back to full strength. Walking in the woods, planning for Christmas and writing. And then my back went. I was under the bed at the time. On my belly waving my new sooper dooper, suck-up-everything-in sight- including-the-cats lightweight (Ha!) vacuum at some sinister and unidentifiable nasties that had been there since I don’t know when.

I had to wait until my husband was free to come and pull me out by my legs, at which point I discovered that I couldn’t stand, roll, sit, or really walk. I was completely buggered. Now I figured that this was an old war wound, one I’ve had almost thirty years since first becoming pregnant. Every now and then it flares up and I am reduced to crawling around, clinging to walls, and leaning on shopping trollies and umbrellas. Ordinarily I’d have dashed off to the nearest chiro/osteo practitioner and said “get me upright!” As I’d had to one panto recently with three shows to perform and no understudy (to give him his due, he succeeded.) But now, because the cancer has caused some fractures and weaknesses in my bones and spine, it is unlikely that many will touch me. Nor would I want them to. So it was a matter of fistfuls of paracetomol and waiting it out. When illness reduces you to being “cared for”, to being dependent, to being reliant, it fundamentally changes how you see yourself. What’s more it fundamentally changes how your partner or loved one sees you too. The nature of the relationship shifts, tilts out of balance. Your loss of power is reflected in the eyes of the one who is left to “care”; where I used to see partnership and mutuality I can now see worry, fear, exhaustion and helplessness. It is so important to hold onto memories of how it used to be and hold tight to the belief that it will be so again. This is one of my BIG fed ups. I am fed up of needing to be looked after, of not being able to fend for myself. I don’t want to lose myself to a new incarnation where I no longer have the strength or will to be who I want to be, to be who I am.

Sometimes it feels like you are trapped in a cage. If only you could find the door and step out to freedom and life as it was before. If only you could wake from the nightmare: dawn breaks and you realise that it was all just a bad dream. And life is wonderfully normal again. Yes, if only.

Early January and finally, after a Christmas where I did, by necessity absolutely nothing, my back was finally on the mend I was back to tentatively trotting about the woods and driving a little. Then came the incident of tripping over the washing. Apart from labour, I can honestly say that I have never felt pain like it. So once again, there I was, as helpless as a baby. X rays and MRIs mercifully showed that I hadn’t suffered a vertebral collapse which the team were concerned about what with everything else that is going on internally. Now some of you may be thinking that its great to be waited on hand and foot, I haven’t cooked a meal in months, or done the washing, or done any housework, or shopped. I’ve barely got off my backside to get myself a glass of water. But it isn’t. And if it wasn’t for Jez I’d have probably starved by now or been eaten by the cats.

I was back in hospital again for a few days the other week. Ridiculous temperature. 100 degrees, for about ten days. They never did really discover why. Me more fed up.

Jez has been making herbal compresses for my back out of the comfrey plant. He rubs it along my spine then trusses me up in clingfilm to marinade for a few hours. Amazingly it has been helping. So at last I had the temerity to think that a corner was being turned, a vision of normality was peeking over the horizon and I could banish the Me that was feeling sorry for herself; the Me that couldn’t see the point in anything; the Me that required “caring for”, the Me that was well and truly pi**ed off and fed up with it all. Oh but that would be far too rosy. How about a scenario where they discover a little abnormality concerning my heart and want to send me for further tests. Like it or not that is the hand dealt me this week. So treatment is on hold while the cause is determined. My poor beautiful tender heart. Where it all started back in 2016 when I had a cardiac tamponade. (Fluid in the pericardial lining prevents the heart from being able to work)

My heart, which has been broken both literally and metaphorically, how I send you love and healing. How well you are doing, and how grateful I am for each blessed beat. Thank you.

It is OK to feel fed I up. Though whether it is completely wise to express it quite so publically is another matter. But I maintain that this blog is about my musings, a desire to make sense of it all, and in many ways to reach out so that I am not alone on this journey, and maybe, I hope, neither are you. I look all around me to find inspiration: in nature, in books, TV, Film, other people, art, and one thing that always lifts me is you. If, by sharing a fragment of my story it helps just one person, it can completely transform my darkest mood. I see value and purpose and meaning all around. Although private by nature, I set myself the challenge of writing the blog to open myself to taking risks and living life a little differently than I previously had done. It is an unexpectedly cathartic process. But if there is one thing that it has taught me above all else is that we are not alone, and together we lift each other up.

Meanwhile, I do not accept this is my “new normal”. I look forward to better days, and looking Jez in the eye and seeing my husband, and seeing him looking back at his wife.

Life is Like a Box of Chocolates

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

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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.

 

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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

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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.

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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