Saturday, 18 May 2019

Earthquakes and silver linings

 It’s mental health awareness week, and although I’m Chairman of a cancer charity, I thought I’d take the opportunity to write about the enormous mental challenges of receiving a diagnosis of cancer.

People who have had the dread diagnosis will tell you that there is ‘life before cancer’ and life after cancer’. That in a fundamental way, things are never the same again. Never again is there the same comforting feeling of a certain future underpinning life. This can be terrifying in much the same way as experiencing the normally trustworthy ground under our feet moving during an earthquake. It generates a level of fear that is existential and ongoing.
Coming to terms with this sort of fear can be one of the most attested to ‘silver linings’ of cancer, but that doesn’t make it something you’d wish on anyone. And even for those who do succeed in reaching silver lining territory, it can be a long and painful road, and one which requires a lot of support. The feelings of isolation that often accompany the fear tend to only compound the difficulties.
When in the midst of such turmoil, talk of silver linings is unlikely to provide much comfort and may even promote anger, but if this aspect of life-sized crises such as cancer were more widely appreciated, then it could hopefully lead to better support, which could in turn mean more silver linings, sooner.
Human beings are notorious for their inability to stomach too much reality at one sitting, and never more so than when it involves dismantling treasured futures. The one feature all our individual futures share is a complete absence of reality - they are products of a practically universal societal habit of living with a ‘security blanket’ that enables us to avoid lots of things in the present that we can’t or don’t want to deal with. This is so ingrained and widespread, so much the very ground on which we stand, that it goes entirely unnoticed… 
until that is, an earthquake 
like cancer comes along to wake us up to the fragile nature of our existence, to our mortality.
After a cancer diagnosis we find a new and unwelcome companion constantly by our side - uncertainty. Above all, humans like to ‘know’ in order to feel secure. But cancer has a way of stripping away our certainties and propelling us into a limbo of waiting - waiting for the next appointment, waiting for the next test result, waiting for the next scan, waiting, waiting, always craving some morsel of certainty. This limbo is purgatory to those who depend on knowing for their security.
But, of course, the truth is that life is fundamentally uncertain, the future completely unknown. Which means that to come to terms with the experience of cancer is in fact to come to terms with Life, with Reality, something few have the appetite for, unless severely pressed.
If, through providing the right kind of support, it was possible for people to move through the mental and spiritual crisis of a cancer diagnosis more quickly, the pay-off could be enormous, and on many levels. But what would appropriate support look like? Well clearly it couldn’t come from anyone still reliant on their own security blanket to feel safe enough to function in the world - this would be a clear case of the ‘blind leading the blind’. The only people qualified for the task are those who have come out the other side themselves. They are living proof of what’s possible and can authentically deliver their experience of the journey and of the benefits of making it.
Fortunately, social media has provided a platform for many - often lead by ‘extraordinary survivors’ - to contact one another, to inspire confidence, to provide support. This is an entirely unstructured process, and who knows, that may be the appropriate means to such an unusual end. But I like to think it could be more structured and thereby more visible as a resource, more accepted as a necessary part of dealing with cancer effectively. The concept of ‘expert patients’ has taken hold to some extent, so maybe it could be extended to a whole other level.
I mentioned that the pay-off for helping someone through the existential crisis of cancer could be on many levels. The reason for this is the now indisputable role of the mind in overcoming challenges to our physical health and regaining our wellbeing. On the macro level, someone drowning in hopelessness and terror - 

a ‘victim of cancer’ - is not even able to make decisions that will give them the best chances. They are likely to allow over-zealous professionals, family or friends to guide critical choices for them. By contrast, a person who finds a way to deal with the uncertainties of cancer will discover a growing autonomy and will place an increasing reliance on their intuition to navigate their best way forward.
On the micro level, science has now demonstrated clearly the effect our state of being has on the functioning of key body systems such as immunity. I often refer to what I find to be the most striking feature of the results of Dr Kelly Turner’s researches into the commonalities of what are described by doctors as ‘spontaneous remissions. In her book, Radical Remission, she dedicates a chapter to each of the nine factors that all extraordinary survivors attributed their recovery to (there were many more factors identified, but nine were listed by all those surveyed). The striking feature of these nine factors is that seven of them are in the realm of the mind and spirit, and only two in the physical. This gives some perspective on the importance of coming to terms with the reality of a diagnosis as quickly as possible.
The inseparability of our mental health from our physical wellbeing is deeply ingrained in our culture - notably in our language - but has only recently started to be accepted by science. With this growing recognition, I hope we can look forward to a time when people are supported at every level when dealing with cancer. The mental and spiritual health of someone with cancer is a major factor in the outcome of their treatment, one that has been discounted for far too long. Might it be possible to develop new streams of support that will enable more people who have had the misfortune to experience the earthquake of cancer to find those silver linings?

Thursday, 2 May 2019

This week's blog is by Dr Mhairi ("Vari") Morris of Cancer Education .  Robin interviewed Vari last week for the Yes to Life Radio Show and we think the work she does needs a big 'shout out'. She has kindly shared her blog below. You can find out more about her work
If you want to hear Robin and Vari having a chat:

How “completing the past” can help with healing

We have talked recently about getting “unstuck”, or “unfunking your funk”. Part of the reason we can sometimes find ourselves stuck is because we’re looping and re-looping the past in our heads.
As the Canadian philosopher Marshall McLuhan so eloquently put it:
“We drive into the future using only our rear view mirror.”
The trouble is, sometimes we’re too tied up in what’s happened in the past that we can’t fully consider the future.
Now, before I continue, I’m conscious that I run the risk of confusing my readers. Is this site for patients or is it for practitioners?
Well, yes, Essential Cancer Education primarily exists to serve the professionals who work directly with patients. However, this week - this month in fact - I want to shift the focus of my writing to help those living through the cancer experience. I’ve felt prompted to do something for patients for a while, and I’m not quite sure what that will look like in the longer term, so I guess in writing this month’s posts I’m experimenting a little with what that might look like. I’m a scientist - to my CORE - and I think I’ll always be playing around and experimenting with things!
And of course, as you know, ‘tis “Generous April”! So once again, I have another free download to help you complete the past.  
Completing the past
“Ok, Vari, what exactly do you mean by ‘completing the past’?” you may ask.
I first came across this idea in Michael Hyatt’s bestselling book*, “Your Best Year Ever” where he talks about the importance of doing so in order to design a better future. He tells us that we need to understand what happened in the past, and how that has affected our thinking, our feelings and our emotions, so that we can move on and not let it hold us back.
Psychologists Daniel Kahneman and Dale T. Miller call this “the power of backward thinking”. You see, an experience - whatever that may be - isn’t complete until it’s remembered.
BUT...and it’s a big BUT!...we human beings have evolved a canny knack for protecting ourselves against painful memories by repressing them. Have you ever found yourself waking up from a dream about something embarrassing or shameful that vaguely relates to something or someone from your past and then carried that guilt and shame around with you for the rest of the day? 
Yeah, me too….
THAT is the subconscious trying to help you process what happened, but it’s in conflict with its attempts to protect your ego by repressing your emotions.
But enough of the psychology. What YOU want to know is how to process it and move on, right?
Acknowledge what we’ve already experienced
It all starts with acknowledging what’s happened. As much as you might wish to never contemplate those darkest of days again, if you just ignore them and bury them, then I’m sorry to tell you, those repressed emotions are likely to haunt you for years to come. You might not be aware of them - it might happen in dreams, or be physically manifested in the body (e.g. ailments, illness, disease). But it WILL persist until you deal with it properly.
If we don’t address what’s happened in the past, the danger is we then go on to live inside unhelpful stories that we tell ourselves. And before too long, we begin to believe them.
...It must be something I did wrong…
...It’s all my fault…
...I deserved it…
...I’m just not meant to be here…
But you see NONE of that is TRUE!
If we entertain these thoughts, these negative, false beliefs about ourselves, our situations, our past and our future (which, by the way, we CANNOT tell!!), then we’re just going to end up dragging all our unfinished business and dirty laundry into the future. And it will get in the way - it’ll sabotage everything we’re trying to build!
Gleaning what you can from the experience
So, I’m guessing that you don’t want to be defined by what happened?
If you’ve lived through cancer, how can you use what’s happened to help you move on? How can you “complete the past”?
Step 1: State how you felt when you first received the news
However painful it might be to remember that time when you first heard the words, “You’ve got cancer”, it’s important to do this in order to complete the past.
Step 2: Acknowledge what happened
This may seem trite and pointless, but stick with me here. By first acknowledging what actually happened, and then stating what you’d have wished had happened instead, you are in fact helping your brain to process the trauma and allowing the emotions to flow freely, rather than repressing them.
Step 3: Learn from the experience
No one wants cancer, yet one in two people will experience it in their lifetime. I believe that we can learn something from every experience in our lives. Please don’t misunderstand me here. I’m not saying that these things happen in order for us to learn and grow, but rather that despite these things happening, we can learn and grow from the experience.
Step 4: Time to change
Maya Angelou famously wrote,
“If you don’t like something, change it. If you can’t change it, change your attitude.”
We have so much inherent power to change our situation simply by changing the way in which we view it and think about it. When you shift your perspective, what comes up for you? Write it down and reflect on it. Will you do anything differently as a result?
Download a free guide on 4 Steps to Completing the Past, designed to help you work through the four steps to completing the past.
Join the movement
Over the past week or two, I’ve been reflecting on my “mission” - why did I start Essential Cancer Education in the first place? What is my vision for its future? What impact do I want it to have in this world?
And the answer came to me in the form of a note written by my friend, Beth, in my little handy jotter that I took with me to a conference:
Now I know that sounds rather grandiose! And I’m not entirely sure I believe it’s possible. But you know what? I DO believe that through education and increasing public awareness of the impact of our dietary and lifestyle habits on cancer risk, we ALL have the power to reduce cancer incidence. Nearly half of all cancers can be prevented by making positive diet and lifestyle changes. Nearly half! That’s staggering!
And as the old adage goes, “there’s strength in numbers”. I can’t do this alone. I believe I’m part of something bigger. A movement of sorts. And I would LOVE to have you join me in this movement. If you sign up to the mailing list, I’ll keep you posted on news and events that I think might interest you. And I promise not to spam you either! Typically, you can expect to receive one email a week, with some additional surprises now and again when I have something special to share with you that I don’t want you to miss. Sign up here.
© Essential Cancer Education

Thursday, 25 April 2019

Cynical and misleading cancer advertising - Chris Lewis

This week Chris of Chris’ Cancer Community discusses the shocking advertising being used by big cancer charities…

When people say that cancer is ‘life changing,’ they are not exaggerating! Whether it is you that have cancer or your friends and family, I believe EVERYONE is affected by it. My question is do we then start feeling vulnerable and more fragile, whether physically, mentally or both? I would like to start by using a quote to define the word. VULNERABLE: “It’s best used for a person whose feelings are so delicate that they can’t withstand any criticism or pressure

As an adult I have never felt vulnerable, always up for a challenge, and feeling emotionally strong, even during the most challenging of times. But in hindsight I realise that it was because I always assumed that my body would be able to stand up to the rigours of life. Since cancer, it has become incredibly weak, and every little thing can become a medical emergency. Doing small jobs around the house is difficult, as I have little strength or movement now, and even getting in and out of the car has to be a carefully planned manoeuvre! Mentally I am still strong and maybe stronger since my experience, but overall I would class myself as feeling vulnerable.

I ask this question because I have become uneasy with the increase of emotionally disturbing advertising I am seeing from the large cancer charities. Adverts telling us that one charity is there for us whatever we need. Another promising that they will cure cancer sooner, with our donations. Many others offering free will writing services, which for me is one of the worst things that I see. Encouraging people who may well be dying of this terrible disease, to leave money to them! If I am honest, I don’t believe that this is morally correct. Of course people don’t have to use that service, or even leave money to the charity. Other will say that it encouraged them to at least get their affairs in order, which of course is a positive thing.


The facts are that for many charities, legacy can be the largest chunk of their income. I run a charity, and I know how tough getting donations can be, I also talk to many very vulnerable people, who barely have enough money to put food on the table, and are also at the end of life. I wonder how they view this new style of advertising? “We support you physically, financially and emotionally,” so says the latest advert from Macmillan Cancer Support. I’m sure there are many people that would agree with this statement, but it is a very bold one! I am working with patients daily, and this is not the general service received. How can they support everyone in this country affected by cancer? Of course they can’t but it doesn’t look like it from their latest advert. Brilliant marketing I must agree, but misleading in my opinion.

Cancer Research UK also come in for criticism for their advertising, focussing heavily on will writing and featuring children frequently always good for pressing the emotional buttons. The issue that I see here is that once one of the big boys moves, everyone else has to, with a fear of being left behind in the never ending quest for donations. Meaning more and more of their income gets spent on television advertising and general marketing. The advertising companies love the cancer world, as they push our boundaries even further. It feels like I am part of a target audience, there to lap up their latest offerings.

I have spoken to these organisations about their lack of sensitivity towards people affected by cancer, but they both hide behind the excuse of increasing awareness of the services they offer! Of course we need to talk about these issues, and we have certainly come a long way in the last twenty years, but are we now going too far? When I look on their social media platforms, I read as many complaints as compliments. But the same replies are given out to every complaint, no human interest at all. Are they even bothered about criticism from the people they are supposed to be helping? I find little humility from their senior management, only interested in statistics, targets and income! 

Yes, we are all a target for these people. As the numbers of us increase, so does their captive audience, new people joining every day. I don’t believe they are interested in treating us as vulnerable people, just as an ever increasing fundraising audience.

Bombarding us with emotionally charged  advertising that shows us how they can help all of us with everything cancer has to throw at us. I personally believe that this is incredibly 
CYNICALMISLEADING and offering FALSE HOPE to many, who actually believe what they are shown on the television. Then as soon as we receive our diagnosis we are bombarded with advertising about making a will and leaving these organisations money in it. Of course we all need to ensure we make a will, but the last thing I wanted to hear after my diagnosis was a begging advert from a charity who has never spoken to me during my life other than to ask for money!

Of course us charities need money to function, but I believe that the current advertising is very misleading and has no consideration for families affected by cancer. Asking someone you have never met for money in their will just doesn’t sit well with me.

Here is the video I refer to in my piece.


I appreciate there will be many points to be raised on this subject, and as always these are mine. Please feel free to join the discussion below! 

Read more posts from Chris here.