Friday, 25 May 2018
Whenever I am struggling and stressed, and life feels just plain challenging, I tend to stop doing all the things that help resource me, like exercise, mindfulness, seeing friends. It can feel hard to focus on organising or doing anything. At these times, I have discovered that doing a gratitude practice really helps and soon begins to change the quality of my day. It is a quick and easy practice to do and simply involves bringing to mind things you are grateful for that day. I find I start opening up to all the things that are good in my life and I regain my perspective.
When you are living with cancer and going through tests and treatment it can be all consuming and over-whelming and it is helpful to remind yourself of what you can be grateful for like supportive family and friends, a team of practitioners you trust in, the nurse who smiled warmly at you today and seemed to understand, the comfort of the bed you sleep in, the flowers bursting forth with colour in the garden, the birds singing. The difficulties and challenges are still there but you begin to notice the good things in your life too, particularly the small pleasures that may come your way.
Recently, I taught a mindfulness course to a group of 14 wonderful people who are living with cancer. I decided to introduce a simple gratitude practice - The Five Finger Gratitude Practice. We had a go experiencing it in the session and if you feel like it, you could give it a try now. Just sitting here, ask yourself what am I grateful for in this actual moment? As you hold the first finger and recognise something to be grateful for, be curious as to whether there is any resonance in the body. Perhaps there is a sense of warmth, of ease or of opening. Then holding consecutive fingers find 4 more things. For me now, I am sitting comfortably for which I am grateful, I am warm, the sky is blue, the sun is setting, and the train is lulling me into a soporific state. Five things I feel grateful for.
The invitation to the group was to do this practice at the end of each day, reflecting on what had happened during the day and feeling again the pleasure or enjoyment of it. Some people experienced it as quite transformative “it made my whole week more pleasant”. One member found that she was beginning to “collect pleasant moments during the day”. As they continued with the practice over the 8 weeks of the course, they too felt it helped put things in perspective.
It can be helpful to aim for a Ten Finger Gratitude Practice which really pushes us to bring to mind the perhaps small and often unnoticed things that happen or the things that we take for granted, like a safe and comfortable home to live in, a warm bed, food on the table.
The fact is that we are hard-wired to notice the negative; what’s wrong, the problems and what feels lacking. The psychologist Rick Hanson says, “attention is like Teflon for pleasant experiences and Velcro for unpleasant experiences”. The good news is that we can train ourselves to pay attention to the pleasant experiences in our lives and as we do so, we start to notice more and more positive things. As the saying goes, what you choose to focus on becomes your reality. Give it a go!
Sunday, 20 May 2018
This week's blog has been written by the founder of Yes to Life, Robin Daly. Here he discusses the lack of men in Complementary and Alternative Medicine (CAM) - where are the men?
If there’s one thing that’s clear from 13 years of developing Yes to Life, it’s that - in the main - men don’t do Complementary and Alternative Medicine (CAM). At least not the ‘softer’ end of CAM. They may do ‘outside the box’ treatments such as hyperthermia or intravenous vitamin C, and turn up for a conference on the metabolic theory of cancer, but put on an event investigating the mind-body relationship, as we just did, and one man turns up.
Kelly Turner, in her landmark book Radical Remission, identifies the key factors in the recovery of a large number of people who were expected to die from cancer, as seen from their own perspective. Nine factors or strategies were shared by all those questioned, and of those, seven were in the realm of the mind, spirit and feelings. The message from this seems to be ‘ignore this area at your peril’.
It’s the same state of affairs when it comes to practitioners. I’ve been part of an audience of well over 100 professionals at a lecture on CAM at which the only other male was the speaker. Even within Yes to Life, although we do have one part-time male volunteer (hero!), he is the first and the only in 13 years*. We have never had a man on the Helpline.
I want to put it out that I think this is a tragic situation, tragic in two ways:
Men as patients
A man with cancer is every bit in need of support as a woman. Women seem to know they are going to need help and they readily go out in search of it. And these days, the advent of CAM means there really is something for everyone out there, from healing to talking therapies to acupuncture. Support groups, retreats, workshops are all largely populated by women. It would seem that some ridiculously outdated abusive male stereotypes around ‘strength’ and ‘independence’ are still prevalent and doing the same damage they have always done to men (and thereby to women). Anger still seems to be the only safe ‘negative’ emotion to wear on the surface, and there is no place for sharing anxiety, despair, confusion and a host of other undesirable and ‘un-masculine’ inner experiences. Of course, genuine strength and independence are about the willingness to be vulnerable. But to do so when men all around are ruled by the law of the jungle is to risk hurt, and so continuing to hide out in a macho shell, just as we have been taught to from day one, often seems a far safer prospect.
None of this is anyone’s fault. It is simply a response to abuse that has been passed down through the generations, and whereas in the 21st century women are seeking to redefine themselves, I think the same is a lot less true of men. As a result, I would say that men with cancer are largely selling themselves short when it comes to capitalising on all that Integrative Medicine - which includes both conventional and CAM methods - has to offer.
Men as practitioners
You only need look to fields such as nursing or nursery teaching, to find parallels to the situation in CAM. They are largely populated by women. And whereas this is by no means meant to be any sort of complaint about women in these traditionally ‘caring’ roles, it’s just that on the rare occasion a man steps in, I find they bring a different energy and they can be really wonderful carers. Until more men have the courage to embrace the unfamiliar ‘feeling’ world of CAM, all patients, both men and women will be deprived of male care, CAM will continue to be sidelined in favour of technical medicine and we will all be the poorer for it.
Furthermore, too many men will be deprived of the rich rewards of genuine connection and care in their work. ‘Being a man’ still seems to commonly involve a moth-like attraction to the devouring flames of hostile and abusive environments such as traditional corporations or indeed healthcare. Once there, they are supposed to ‘prove’ themselves, or failing that, to at least try to survive. In this they are part of an endless cycle, because of course abuse begets abuse, and in time they come to take out their victimised rage on the next generation. Although not explicit, it seems to me that the #MeToo campaign is calling for men to step off this treadmill once and for all.
Both-and, not either-or
It’s obvious to me that we need both the technical brilliance of conventional medicine and the care and compassion of CAM. Hence the stance of Yes to life in supporting Integrative Medicine, the broadest possible, most inclusive approach.
Dr Robin Youngson, inspirational global campaigner for compassion in healthcare, in what he describes as ‘The most important paper I have ever written’, describes conventional medicine as ‘mindless’ medicine, in that it applies acute medicine methods to all healthcare. Acute medicine can be reasonably effective with little understanding of, or interest in the person being treated. Although the patient may feel abused in many ways by the experience, they will probably be grateful to be alive. This same approach when applied to complex long-term conditions, creates the health crisis we are now in the midst of. Poor understanding of patient needs and a proscriptive and impersonal approach that largely treats symptoms is a recipe for disaster.
And in case you are in any doubts about how bad things are, in 2014 the NHS reported that pretty much half of Britain’s adult population had taken a prescribed drug within the last week (so that excludes over-the-counter medications) and almost a quarter had had at least three prescribed drugs. And it gets worse with age - more than half in the 65-75 band were on three or more medications and almost three-quarters in the over 75s. We are a nation on drugs.
I would maintain that it’s fair to characterise conventional medicine as broadly masculine and CAM as largely feminine, when looked at from the perspective of relationship to feelings and therefore to genuine person-centred care. Conventional healthcare came up with clinical detachment as a super-strength, bullet-proof version of the male shell. If you want a genuine listening ear, someone determined to get the root of your difficulties and to care about the quality of your life, the place to go is to a CAM practitioner.
The lack of care in healthcare systems is legendary, and it is this that Robin Youngson has been valiantly attempting to combat for years. Efforts over decades to bring in ‘patient-centred care’ and ‘patient choice’ have largely failed to make any impression on the top-down, abusive, military-style constructs of healthcare. Rather like the men, things desperately need to move on in the way healthcare sees itself. It needs to step outside the fear-driven 20th century paradigm it is stuck in, which continues to foster abuse, not only of those in its ‘care’, but also, crucially, of healthcare workers.
A key element of Dr Youngson’s renewed message is the need to embrace CAM if we are to begin to combat the tidal wave of chronic illness that is engulfing us. While not explicitly using the term Integrative Medicine, his mission to bring care and compassion into healthcare seems to be refocusing around the understanding that it already exists within CAM, and that therein lie the answers. We need both the ‘masculine’ energy of conventional and the ‘feminine’ of complementary medicine to give a full and rounded response to the desperate state of our health, and if we want to create a healthcare system that truly cares for both its patients and its workers.
More and more women are stepping into senior roles within healthcare, but for the desperately-needed change to take hold, we need more men to take up caring roles and to champion the needs of vulnerable people for sensitivity, respect, engagement, listening and a host of other ‘soft’ skills.
So, men, how about joining us as a volunteer at Yes to Life?
*Actually, not 100% true as we did have one in the very first year of the charity, in accounts!
Sunday, 13 May 2018
This week's blog is by Dr Lauren MacDonald in aid of National Sun Awareness Week. Here she shares some helpful tips of what to look out for when detecting skin abnormalities...
It’s National Sun Awareness week here in the UK and I feel it’s my duty to highlight just how dangerous that longed-for “suntan” [read: sun damage] could be at some point in the future. I basically REALLY don’t want any of you going through the same ordeal I’ve been going through for the past few years (and it can, in theory, be prevented).
What Is Skin Cancer?
First things first: Skin cancer (or malignant melanoma if you are using medical lingo) KILLS. Every single day people of all ages and skin tones die from skin cancer. It is one of the most aggressive, sneaky cancers around – and it loves nothing more than to spread to internal organs (particularly the liver, lungs and brain). There are still some people who believe that it’s “only skin cancer'” and, therefore, not a big deal – but these people are sadly incredibly ignorant. Believe me, skin cancer is one nasty beast. In the last few years I’ve undergone four major surgeries and I’m still having infusions of a semi-toxic drug (and have been for the past 18 months). I might well be “cancer-free” at this moment in time, but it’s been one hell of a rough ride to get to this point…
I’ve read a few articles in the press about me which have incorrectly claimed, “Lauren never sunbathed due to her pale skin”. Unfortunately this isn’t true and I must take some responsibility for this situation. If I’m honest I loved having a sun-kissed tan in my late teens and early 20’s and I also enjoyed plenty of sports outside (surfing etc) – so I was by no means someone who hid away from the sunshine all summer and yet was unlucky enough to get melanoma anyway (sadly there are plenty of stories like that too). Having said that, I didn’t sunbathe that often (I’d get bored pretty quickly) and I always made sure to wear high factor sunscreen.
Although I’ve got freckles and a few moles on my body, my melanoma didn’t actually originate from a pre-existing mole – that’s another incorrect claim that I’ve read about in the press and one that I’m keen to expel. Instead this is what happened: One evening I was rubbing moisturiser into my legs after a bath and I noticed a tiny, strange-looking pink’ish blemish/lump just above my right knee. It was slightly raised and had tiny blood vessels visible on its surface. I left it for a few weeks and although it didn’t grow in size, it did start itching occasionally. I went to see my GP and expressed my concerns – I’d recently passed by medical school final exams and ironically one of our final practical exams had been a malignant melanoma case. I asked out-right if he thought it could be melanoma but I was reassured that it was likely benign. However I was asked to return if it changed at all. It didn’t change and it didn’t grow any larger. Yet it didn’t disappear either. It remained firmly there on my knee for another six months – right up until I was shaving my legs one day in the shower and I caught it with my razor. This resulted in it bleeding profusely – and caused me to urgently return to my GP. From that moment on, things went a little something like this:
As I said at the beginning of this post, I really, really hope that my story can help prevent you or any of your loved ones going through this. Skin cancer has a cure rate of around 90% if it’s caught early…
What To Look Out For
Keep in mind the ABCDE of warning signs:
A: Asymmetry. If you were to draw a line through any skin blemish/mole/lump, do both sides match in color and shape? If not, it could be a sign of melanoma.
B: Border. Benign marks tend to have smooth, defined borders, while malignant moles might be uneven with rough edges.
C: Colour. If your mark looks dappled or has multiple colors, it could be a sign of melanoma. Benign moles and sunspots tend to be solid and brown.
D: Diameter. Malignant marks tend to be bigger in size, but the best rule of thumb is to monitor your mole or sunspot and see if it grows. If so, it’s time to get it checked out by a GP.
E: Evolving. Again, whilst they might darken and fade with sun exposure, most benign marks stay the same over time. If you notice any changes in a sunspot/mole/patch of skin, you should get it checked out to be on the safe side.
Know Your Skin
A dermatologist will be able to give you a thorough exam (there are plenty of private clinic available if you can’t get a referral through your GP), but it’s definitely worth knowing how to give yourself the once-over at home so you can keep an eye out for warning signs.
After you’ve finished reading this post I’d love you to stand butt-naked in front of a mirror and twirl around until you’ve got a good idea of any marks or moles on your body. This will help you to notice if something is new or changing. Plus it’s good to get naked and admire your beautiful body occasionally anyway
The Bottom Line
I really should have trusted my gut instinct and pushed harder for a dermatology referral and biopsy the first time I presented to my GP. I had a bad feeling about that weird little lump – that’s what led me to see my GP in the first place. Of course we’re all human and it’s inevitable that cancers will occasionally get missed by doctors (I’m a doctor myself and I also wasn’t sure whether I was definitely dealing with a melanoma or not). Try and get in tune with your body. If you have an overwhelming feeling that something isn’t quite right, trust your instincts and show it to a doctor – and keep showing it until they listen to your concerns.
By all means continue to enjoy the sunshine and all the joy it brings, just please, please, please respect the rays too. I’ll write another post on my favourite sun protection products later this week. ♡
Sunday, 6 May 2018
This week's blog post is by Dr Lauren MacDonald, stage IV cancer survivor. This week she discusses the topic of 'scanxiety' and shares methods she uses to cope with it...
Anyone who is currently in remission from cancer, in the midst of cancer, or has a close family member or friend with cancer, sadly knows this term only too well. ‘Scanxiety’ essentially refers to the anxiety generated by follow-up scans (MRIs, CTs etc) which are used to collect new information about your hidden inner world every few months.
For anyone who thankfully hasn’t yet been touched by cancer, scanxiety is not dissimilar to the apprehension you experience whilst waiting to find out if you’ve passed an exam – you just need to multiply that ‘I’m-so-nervous-I’m-going-to-vomit’ feeling by about 100. Because sadly this kind of exam isn’t like any type of school exam or driving test – one which you’ll get the chance to retake and potentially pass another time. If you fail a follow-up scan (especially badly enough), it might well be game over in the long run.
My Experience With Scans
Personally I’ve had a mixed experience with scans; over the last nine months I’ve gratefully been on the receiving end of three incredibly positive scans, but it’s not always been happy news. Unfortunately I found out I’d progressed to stage 4 (meaning the cancer had returned and had spread to other areas in my body) via a phone call after one particular routine scan at the end of 2015. At the time I’d gone back to work in a GP surgery and I answered a call on my mobile between patients. It turned out that it was someone from the administration department at the hospital telling me about the ‘urgent biopsies’ that had been requested due to my scan results.
Scan results? What scan results? I was due to see my Oncologist the following day and my parents were currently driving from Devon to Brighton in order to be with me for the results. Yet, unfortunately, here I was being told that it was highly likely that the cancer had returned (and spread), whilst I was at work and very much on my own. The non-medical person on the end of the phone also had absolutely no idea what my scans had shown or which organs I was having biopsied which inevitably left me thinking the worst. I left work immediately, convinced that I was riddled with cancer. Needless to say, that was not a good day.
I did have another negative scan back in March 2016 (which showed that the tumours were still growing), but at least I received that news when I was slightly more prepared. For starters I already knew that I had tumours in my body (and that there was only around a 30% chance that the treatment would get rid of them). On this occasion I also received the bad news whilst sitting in a hospital room with my oncologist and my mum – instead of via a phone call whilst at work. Having said that, no matter who is by your side (or where you are) when you get the results, scans are always going to be life changing, one way or another. It’s essentially like having a life sentence read out to you by a judge/oncologist. Naaaat so much fun.
Dealing With Scanxiety
Although I’ve got much better at coping with my ever-looming scans, once I’m within the two week window period (which is where I am now) I inevitably feel the anxiety creeping in. I tend to start thinking about cancer more often, my sleep gets increasingly disturbed, I break out in spots, and I generally feel more exhausted and on edge. And because the mind-body connection is so incredibly powerful, I also start getting all sorts of aches and pains in my body. This month I’ve had terrible headaches (? a brain tumour – FYI: I’m 100% sure that looking at brain tumours on scans all day at work is fuelling this particular symptom), whereas previously I’ve been convinced a dull ache beneath my ribs meant that the cancer had spread to my liver (fortunately it hadn’t). These symptoms also seem to miraculously disappear following my scan results. I like to think of myself as a pretty chilled person but I definitely feel myself losing the plot a little around scan time!
I can’t help but wonder how on earth other more tightly wound people manage to cope with the stress of scans. I’m not surprised that several studies have revealed that follow-up scans can trigger classic symptoms of post-traumatic stress disorder in cancer patients and survivors. Of course it is completely normal to experience anxiety due to scans, but the key is to be able to take steps to prevent these emotions from causing unnecessary distress. As a result, over the last few years, I’ve developed a few tricks for trying to keep myself sane before scans. Here is a list of things that sometimes work for me:
Recognise That Worry Stops Nothing
My top tip around scan time is to just keep reminding yourself that worrying about the scan achieves nothing. I used to waste so much precious time and energy worrying about the potential outcome – until I realised that it was just draining me further. Try to remember that the results will be the same whether you worry about them beforehand or whether you don’t. I know it’s easier said than done, but try not to worry.
Trust The Universe
I really do believe that the Universe is in charge. As humans, we tend to believe that we know the path our lives should take and we think that it’s up to us to steer our lives in that direction. And that is true – but only up to a certain point. Sometimes you just need to surrender to the Universe – because once we surrender and trust that there’s a bigger plan for us, things start to feel a whole lot easier. I promise.
I know most of my posts mention ‘mindfulness’ somewhere within them, but it’s because it really works as a practice. Mindfulness essentially means focusing fully on whatever action you are doing – allowing yourself to be fully in the moment. Whether it’s brushing your teeth, looking at a sunset, or taking a yoga class, moments such as these slow us down and give us the chance to experience some much-needed inner peace.
Please don’t take this the wrong way. I think the first instinct, for both patients and friends/family, is often to try and come up with a positive spin. Personally my pet hate is when people tell me to “think positive!” prior to a scan. Many cancer patients feel under pressure to try and buffer potential bad news with a dose of positivity – but any positivity has got to come from the heart. There’s no point faking positivity in front of people if it’s not true, surely that’s just more stressful? Having said that, whilst positive thinking alone can’t cure cancer, I do believe that attitude is critical to getting through the process and growing as a person. It’s a daily note to self: I’m going to beat this. I know plenty of people find them really annoying but I LOVE an affirmation. I regularly save ‘gems’ that I see whilst scrolling on social media and then look back over them when I need a boost.
Please don’t take this the wrong way either. I’m definitely not against remaining positive but I think it’s important to remain a realist too. As highlighted in her book “Bright-Sided”, Barbara Ehrenreich explains, “We need to brace ourselves for a struggle against terrifying obstacles – both of our own making and imposed by the natural world. And the first step is to recover from the mass delusion that is positive thinking”. Essentially she raises the question ‘at what point does positivity become a form of denial?’. I try to remain pretty neutral prior to my scan results – I don’t let myself get my hopes up that I’ll automatically be granted another clear scan but I also don’t freak out that I’m going to be riddled with disease. I know people claim you can ‘think cancer away with positivity’, but I’m not part of that camp.
Although I’ve been trying to live a more minimal lifestyle over recent years – 1) because you REALLY can’t take all that junk with you to your grave and 2) because our consumerist society is destroying our planet – I do usually treat myself to something special (usually a piece of jewellery, a trip away, or even just some extra luxurious bubble bath) before and/or after a scan result. Whether it’s good news or bad news, it helps a little
Let Yourself Be Supported
As I learnt the hard way, having people who love and care for you beside you during your scan results appointment is crucial. I feel desperately sad for anyone who has to go through cancer treatment alone. If you know any neighbours or friends who are currently in this situation please, please offer to go along to their scans/appointments/treatments with them. It won’t take much out of your day and it will likely mean the world to them.