To prognosticate or not to prognosticate

prog“So what’s your prognosis?”

If I had a pound for every time someone asked that question, well, I could probably fund a feet-up, rub-down weekend at Champneys.

But I’m just going to say it – it royally p***** me off!

I made the choice not to ask for my oncologist’s prognosis as to my impending mortality. Why? Well, firstly I wasn’t hopeful that I would hear anything I really wanted to hear. Just a cursory google about lung cancer survival had shocked me enough to know that. On top of which there were other serious issues I was dealing with, so I wasn’t in a hurry to hear the news.

I was also conscious of how our own minds can lock, stock and barrel influence the well being of our physical selves. How our beliefs can impact our health both for the good and negatively. I was mindful of the possible consequences of self fulfilling prophecy. If I am told I only have until Christmas, I could potentially limit my opportunity to survive beyond that, because I have so completely surrendered my authority not just to the disease, but to the medical establishment? I read  a famous account about a man who was diagnosed with liver cancer, he hoped to make it to spend one last Christmas with his loved ones which, happily he achieved, but sadly passed away soon after. An autopsy later showed that tests had shown a false positive reading for the progression of his disease. In fact, very little cancer was present in his body at all. The question is, was it his expectation of his own death that in fact killed him?

Sky Mood Chess Board Tree Hourglass Princess

Making a prognosis is not easy. To my lay person’s mind it is at best an educated guess based on a cohort of statistics. In my case, the statistics for lung cancer are taken most recently from 2010, so they are out of date. They reflect an older population, as at that time this is where lung cancer was most commonly found. In lung cancer terms, I am considered quite young.( Yay, knew I’d find a positive if I persisted) So the median, may not be as applicable to my situation, as I am not someone who is 70 with a lifelong history of smoking. And statistics don’t factor in what else one is incorporating into one’s healing journey such as lifestyle changes addressing nutrition and exercise, addressing stress levels and depression, or taking supplements, alternative therapies and treatments, counselling  etc and nurturng not just the physical and mental, but one’s spiritual life. Which research tells us, feeds into a person’s well being enormously, and therefore could potentially influence healing outcomes.

But back to prognoses – and just as everyone’s experience of cancer is unique to them , so is the decision to ask the doctor to prognosticate. I know that people want to understand what lies ahead for many reasons: practical matters have to be put in place, affairs put in order, maybe take that dream trip you’ve always put off, or what about those who want a prognosis in order to defy it, to exceed expectations, and to continue running right through the tape and beyond the finish line and into numerous triumphant laps of honour – gold medal hanging proud. For the doctors, having an idea of prognosis should enable them to establish the right options, and best care that is needed at every stage. Yes, they can get it wrong – they are human trying to do their best against a disease that has the skill to transform, hide, return, and persist and has outwitted the best brains for too many years.

So back to why I am royally p***** orf.

I think the question lacks sensitivity, compassion and understanding.

“What is your prognosis?” is akin to asking someone the question “how long do you have left to live? How long before you might die?”

It isn’t a casual question. It is profoundly personal, intimate and private.

Yeah, right. Not pleasant is it. At least, that’s what it feels like over here. I am quite convinced that you don’t mean offense. But it is deeply painful to hear. Please, please could you maybe be a bit more mindful if ever that question forms in your brain, and not let it escape your mouth. It might just be a passing question, or even a genuinely concerned question, but please think, engage your brain, and remember that there is someone who, despite looking absolutely bloody gorgeous on the outside is actually doing their damndest to keep on keepin on.

OK rant over. Keep well.

Oh, and I sincerely apologise if the cartoon offends. I find that sometimes black humour keeps the gremlins at bay.

Love always xx

Below is an article from the Guardian 2015 https://www.theguardian.com/lifeandstyle/2015/jun/02/doctors-predict-patient-die-prognosis-wrong

And for a less ranty evening do join me in London on Thursday January 18th.

https://www.cecilsharphouse.org/component/content/article/21-shared/shared-events/5090-cancer-and-the-art-of-living-an-evening-with-leah-bracknell

 

The Benefits of facing a Challenge

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As if life were not currently challenging enough, someone in their wisdom, namely myself, decided that more challenge was required.

“Why not organise a talk?” I said to no one but myself.

Seemed a brilliant idea in the moment. Never mind that perhaps my attention should be on more pressing matters, such as my health. Is it distraction? Possibly. Or is it actually something that is a vital part of my healing journey?

When illness and dis-ease blasts the wind from our sails life becomes a series of mental, emotional and physical challenges: daily mountainous obstacles to overcome, to face, or to endure. The  stress and fearful anticipation  of facing operations, hospital visits, scans, scan results, injections, blood tests, biopsies, x-rays seems endless in the face of uncertainty, and no, it doesn’t really get easier. It just becomes a part of one’s routine, an aspect of one’s new life.

But having a goal on which to focus, can be hugely motivational and inspiring. Why? because it puts you back in the driving seat. It reminds you how important it is to have things to look forward to in the future. More than that, it dares you to consider a future when a future of any certainty is the one thing that does not come with a guarantee. It reminds you that you are alive and that you still (and why not) have something to contribute.

Something strange happens when you receive a stage 4 diagnosis: contemplating the future, something I formally would have taken for granted, suddenly becomes the elephant in the room. How do you contemplate any future when what you are actually perching on the cliff edge, and the fragility of your mortality is the loudest voice in your head?

Just after I was diagnosed, in September 2016, my partner gave me – an eternity ring? box of chocolates? roses? nope. A calender for 2017. I didn’t even know if I was going to get to 2017 if I am honest. A calender for pity’s sake?

Fill it in, he said. You’re not going anywhere.

And so I did. And , you what, it turns out he was right!! But it wasn’t easy, it wasn’t easy at all. The feelings and fear and uncertainty it prompts. Yet, we mustn’t be afraid to invest emotionally in our future. It sends out a message to the universe if you like, and more importantly to yourself that you want and deserve a future. Life does not stop at a diagnosis. It used to scare me- Planning something for months ahead, but now? Hell no, we have just booked something crazy and fun for the summer and I have every intention of going.

Unconsciously, we can fall in to limiting ourselves because we buy into the expectations of others. For example, we fancied a little jaunt in our van last spring. We set the compass towards Hadrian’s Wall, but we never got there as we got distracted by the awakening beauty of the Lake District and the blooming Wordsworthian daffodils. We had a blast. However, prior to leaving my oncology team were concerned about the distance.

“Stay near a hospital” they urged. We know people at most of the major hospitals, except around Northumbria and the Lakes, where are you going again??”

Oh dear, my bad.

Not long after diagnosis, unsurprisingly, I felt a little cheering up was in order. And, clothes shopping was my chosen pick-me-up. But, somewhere inside of me a little voice niggled:

“New clothes? Hmmm, you sure you’re going to get much use out of them, after all, stage 4? Tick tock tick tock.

Yes, I actually almost entertained not purchasing a new pair of jeans, for fear of not getting use out of them? Dammit. No, I was not going to give into that fear, not pander to expectation. So I bought 2.

Do not start packing up your life before it is over. When you have stage 4, sometimes it is other people, health professionals, friends, family, who unconsciously and not with unkindness, begin to pack it up for you.

So returning to the subject of meeting a challenge which is to the forefront of my mind with only 3 more sleeps before lift off, why challenge yourself when life is already aiming plenty of arrows in your direction. First of all, I feel really called to do this, passionate about doing it. And I suppose I feel that by making the effort, a considerable effort to attempt to pull off something waaaay out of my comfort zone, that intimidates me almost as much  as it inspires me, that forces me to face my fear and do it anyway, will have a fair pay off in the sense of achievement. Even cementing the date in the diary was fairly daunting. What if I was unable to attend, what if I am unwell, what if… well, just that, what if …… ?

But if I can pull meet this challenge, it will bestow a confidence that will stand me in good stead for the other more medically related challenges that may loom upon the horizon. Every time we conquer a challenge it fortifies us for what lies ahead, each time we face a fear and meet it, stand up to it, we pay into our bank of resilience. It may even grace us with the knowledge that we are more courageous than we remember, and that we can achieve more than we realise. Goals are vital for the enrichment of everyone, it gives us purpose, and having purpose is a vital component for leading a fulfilling life. And, the goal need not be the end, just something to aim for, to aspire to, to motivate, to inspire, and  just having a go is equally priceless. That’s all. So, you may not complete every challenge, but that you take up the gauntlet shows that your spirit is willing and desires expression. There is NO failure in having a go.

“If you are going to fail, fail magnificently ” Martin Prechtel

Goals-1The scale of the challenge matters to no one but you. I know there are days when even getting dressed can seem like an insurmountable challenge, so not everyone need rush to the nearest bungy jump.

So, as I sit here feeling the fear. Feelin’ it in my bones. I know it’s a good fear that’s all to do with creating a successful evening, being of service, sharing, coming together in a spirit of hope and possibility, standing united, seeking inspiration and sowing seeds of hope and love and healing. Yes, it’s a good fear alright. It’s a sensation that says : Here I am Life. Embrace me.

That I have the opportunity to celebrate life in this amazing way is such a delightful gift for the soul. And what’s good for the soul is good for the body and good for the mind. So, I am nervous yet hugely excited. I am look forward so much to hanging out with everyone on Thursday – travel safe, be well, I hope to see you there.

Om shanti shanti shanti. Peace always.

xx

Information and booking for : Cancer and The Art of Living – an evening with Leah Bracknell at Cecil Sharp House, Camden.

https://uk.patronbase.com/_CecilSharpHouse/Productions/8F/Performances

 

 

 

 

Breathe In -Lung Cancer Awareness Month

lungs

So, last month was Lung Cancer Awareness month, was it? Oh dear, sorry I wasn’t aware of it. My invite must have got lost in the post!

But, better late than never. So, here I go:

Lung Cancer is THE biggest cancer killer of  men and women in the UK.

Every 15 minutes someone dies of lung cancer.

Over 45,000 people are diagnosed with lung cancer (that’s around 130 per day) and over 35,000 patients die from it each year – more than breast, bowel, bladder and uterine cancer combined.

Yet it receives only 7% of research funding. 

This is down to the stigma that surrounds the disease due to associations with smoking. Those with lung cancer experience more judgement than people with other cancers, the first question rather than being “I am sorry . .  is there anything I can do . . can I help?  is “did you smoke?”

FACT:

Lung cancer does not confine itself to smokers. The average age for someone to be diagnosed with Lung cancer is around 70. But every year more people are receiving diagnoses younger and younger, and often they have never smoked in their lives. 1 in 7 cases are not linked to smoking. Yet 1 in 4 people surveyed have less sympathy for lung cancer patients than any other cancer.

This is the late AA Gill’s view:

“There is little sympathy for lung cancer. It’s mostly men, mostly old men, mostly working-class old men and mostly smokers. There is a lot more money and public sympathy for the cancers that affect women and the young. Why wouldn’t there be?”

The Roy Castle Foundation write:

 “The stigma of smoking is one that continues to haunt lung cancer patients. It is the cancer you caused yourself, you got what you deserve.”

“Smoking is the primary cause of lung cancer. We know that, we aren’t trying to disguise that fact. The problem is people with lung cancer are therefore vilified, made to feel like they deserved this awful disease because they choose to smoke – even those who have never smoked a single cigarette in their lives.

Let’s be honest, the villains of this piece are the tobacco manufacturers and the Government’s inaction on smoking is allowing them to escape unharmed. The same cannot be said for its consumers and we are now worried, at a time where there is so much fear surrounding our over-stretched health and social care system, that lung cancer patients will be ostracised further.”                                                                                                           Paula Chadwick CEO Roy Castle Lung Cancer Foundation

I myself have smoked in the past. And no one can make me feel more guilty about that than I did, let me tell you. Even when I was told that the type of lung cancer with which I was diagnosed was not caused by smoking, it was a bitter sweet revelation, and let’s be honest, it can’t have helped. But to fail to fairly fund research into detection, screening, treatments etc due to prejudice seems to be almost inhuman. The nature of life is such that we mortals do do things that are not good for us, we drink, we smoke, we take drugs, we over eat, we don’t excercise etc etc, and that all has health consequences, do we stand by and judge everyone and smear them with prejudice? If a person has skin cancer, are they  blamed or shamed because they didn’t use sunscreen?

Every year thousands of people are dying from lung cancer, and maybe we don’t all need to! So, do check yourself out if you have concerns. We need to raise awareness of the disease and inequality surrounding funding for lung cancer, to motivate the government to address the shortcomings, welcome early screening initiatives, and extinguish prejudice.

“An awful lot of people don’t survive lung cancer; an awful lot of people survive other forms of cancer that have been given funding. If more funding was given to lung cancer, more people would survive. It’s up to the MPs – they’re the ones with their hands on the purse-strings that can sort this out and save our lives”                                                                      Tom, 48, living with lung cancer.

lungs 3“Nobody deserves to get lung cancer.

They should not be made to feel ashamed. They should not feel like they need to justify their illness or their life choices. They are so much more than their diagnosis. They are people. They matter.
They can hold their #HeadHigh.” ( RCLCF)

The shocking truth is only 38% of people diagnosed with Lung cancer survive a year or more. Largely this is due to the fact that many cases are diagnosed too late. If you suspect that you are showing symptoms don’t bury your head in the sand, get checked out and maybe you will be giving yourself a fighting chance.

The most common symptoms of lung cancer are:

  • a cough for three weeks or more
  • a change in a cough you’ve had for a long time
  • a chest infection that doesn’t get better, or repeated chest infections
  • feeling breathless and wheezy for no reason
  • coughing up blood
  • chest or shoulder pain that doesn’t get better
  • a hoarse voice for three weeks or more.

Other possible symptoms are:

  • losing weight for no obvious reason
  • feeling extremely tired (fatigue)
  • the ends of fingers change shape – they may become larger or rounded (clubbing).

If you have any of these symptoms, it‘s important to have them checked by your GP.

Breathe in – we have lung cancer. It’s hard enough without the stigma. Don’t ignore us!

Roy Castle Lung Cancer Lung Cancer Foundation

MacMillan Cancer Support

Cancer Research UK

Leah’s Talk – Cancer and the Art of Living January 18th 2018