The skin I live in: a 7 year journey

As my latest round of cancer treatment is coming to an end, it has prompted me to reflect upon the mind-body journey I’ve been on.

I’d had rashes all over my body for many years, without realising I had cancer. But in 2007, I found a big lump in my groin, went to the doctors and was diagnosed with cutaneous t-cell lymphoma with mycosis fungoides - a kind of skin cancer.

At that time, I was overweight, unhealthy, stressed and depressed. Cancer seemed like the last straw.

The doctors wanted photos of my rashes, so I was taken to the medical photographer. Standing half naked, with my arms out stretched, my gut hanging over my boxer shorts and my skin covered in lesions, flaking away onto the floor as he took pictures, I felt ashamed.

Four cycles of chemo later, the tumours in my lymph nodes were gone, but the rashes remained and continued to deteriorate over subsequent years.

While my skin was getting worse, my health was otherwise improving. I’d never done any exercise in my life before. But the experience of going through cancer treatment had inspired me to get fit, so I started running and weight lifting. I became very interested in fitness and I even became qualified as a personal trainer.

But by 2013, my skin had worsened so much that I was starting to look like the Singing Detective. I was shedding the top layer of my skin like a snake and I had to stop running because it was just too painful to move. For the second time in my life, it seemed like things were coming to a gloomy end.

Fortunately, however, I was referred to a new consultant who prescribed photo-chemotherapy: a combination of drugs and ultraviolet light treatment. (Essentially high-tech sun beds). Treatment has given me a deep, even, all over tan. It’s the first time I’ve ever enjoyed a side effect of cancer treatment. And more importantly, it has worked. My skin is looking better than it has done in over 15 years.

I’ve now got just one more week of treatment to go. My cancer in remission, my skin has cleared up, and my hard work at the gym is finally starting to pay off. Who knows what the future has in store, but right now, this is a pretty special moment for me.

I'm now looking forward to going on holiday to Greece in May with my partner, Martin. It will be nice, for a change, not to feel ashamed of my skin on the beach, and it will give me chance to top up that tan.

Why I'll always support Lance Armstrong

Lance Armstrong was a role model for me throughout my cancer treatment. I kept reminding myself that he had undergone chemotherapy, just like me, and then gone on to win the Tour de France seven times. I can’t describe how important this was to me. It gave me hope that there would be a future for me after my treatment was complete. And it made me aspire to be strong, like Lance.

In his autobiography, “It’s not about the bike,” Lance explained that when he was presented with the stark reality of how tough his chemo regime was going to be, he felt confident because it was a physical challenge, and he said that “as an athlete, physical challenges are something that I’m good at.”

The idea of being an athlete captured my imagination. It couldn’t have been further from who I was at the time – I was not remotely sporty. Far from it. I was unfit and very overweight. I'd never run further than 400 meters in my entire life. But I wanted to be strong like Lance, and I wanted to know that if I ever had to face something like chemo again, I would be ready. I wanted to be an athlete who was good at physical challenges too.

After successful chemotherapy treatment, five years later my cancer is still in remission, and I’m fitter, healthier and happier than I have ever been in my life before. I took up running and weight training. I lost 42 pounds, and then put on 14 pounds in lean muscle. I’ve given up alcohol. I’m always in training for my next marathon, and for the first time in my life, at the age of 40, I have a six-pack. From never doing any exercise, I now do a 2 hour workout every day, and I’ve recently become a qualified personal trainer.

And it's all thanks to Lance. His seven Tour de France wins were victories for cancer patients and survivors everywhere, and no one can take them away from him or from us.

Update:

Well, I was wrong about that last bit. They did take Lance's victories away from him. It's quite a blow to discover that our heroes are in fact all too human. Lance Armstrong has now admitted that he lied, and that he did in fact cheat. There is no justification for this behaviour. The strange thing is though, that apart from the past paragraph, everything else in this blog post remains the truth. 

What Lance did was wrong. No excuses. It's also true that his actions helped a lot of people in dealing with cancer. This is not a justification or an excuse. It's just another fact. Which I think just goes to show how complicated the world is. Few things are black and white. Bad decisions can have good consequences, just as well meaning intentions can sometimes have bad consequences. 

I'm really disappointed that a hero of mine turned out not to be the saint that I thought he was. But then, perhaps that's my fault for idolising him in the first place. Now, with a clearer perspective, I see a complicated individual with both good and bad intentions. I suspect though that at the end of the day he'll leave the world a slightly better place than it was when he arrived. And perhaps that's all that any of us can hope for.

NLP and Cancer

Today at Sue Knight's NLP Alumni "Inspire Day" at Bix Manor, Henley, I gave a talk on how NLP techniques helped me when I went through cancer diagnosis, chemotherapy, and during my subsequent recovery. I'm posting an extended transcript of my talk (including content I didn't have time to cover during the event) for anyone who is interested. Check it out after the break.

Cutaneous T-Cell Lymphoma - A Poem

My skin is covered in tattoos.

They're fiery red and constantly changing, like flickering flames.

They tell the story of where I've been and they hint at where I'm going.

My tattoos are what Buddhists call dukkha.

They represent suffering, but through that suffering, they provide fuel to kindle the flames of my spirit.

I didn't choose these tattoos, they chose me.

It isn't easy being marked in this way and sometimes the rashes make people stare.

But I'm grateful that they are there.

As the tattoos on my body wax and wane, brimming with the threat of relapse, they remind me to live every moment as if it is my last.

The Red Queen's Race

Last week, I ran the Bath Half Marathon. It's the first big competitive race that I've ever run, and it represented the culmination of over a year's training, as I built up my fitness and stamina after coming off chemotherapy.

By a strange twist of fate, just days earlier, my doctors had discovered a new lump, and I was booked in for a scan the day after the run. So even as I was at my peak of physical fitness, I knew that I could be back on chemotherapy in a matter of days.

Before my cancer treatment, I had never been interested in sport, and I never ran anywhere. I simply did not consider myself to be athletic. But my experience of cancer treatment and recovery forced me to challenge a lot of my presuppositions about myself. I discovered that I possessed greater strength and emotional stamina than I ever imagined. And I realised that my negative self image had been seriously limiting my potential.

So, even as the chemo had been reducing my physical stamina, it was also like an incubator for a new me. It forced me to raise my game, just to stay in the game. Sometimes being held back is precisely what we need in order to ultimately be propelled forwards. It's like the Red Queen says in Lewis Carroll's Through the Looking-Glass: "It takes all the running you can do, to keep in the same place." Like running on a treadmill. Imagine what happens when the treadmill stops, but you don't. You start moving forwards… fast.

And since the chemo, that's exactly what I had been doing. Moving forwards fast. But the looming possibility of a return to chemo threatened to bring my journey to an abrupt halt.

This uncertainty could have cast a cloud over my run, but that's not how it turned it. In fact, the scan served to heighten the intensity of my experience on the big day. Since my future was clouded, and all of my past year had led up to this point, it caused me to focus entirely upon the day itself. To reside in the moment. The experience was all the more vivid, intense and exhilarating as a result.

As it turns out, the scan results delivered good news. And upon reflection, I realised that I was glad the scan had coincided with the half marathon. It made me realise that I had never left the Red Queen's treadmill, and I never will. We're all on that treadmill - it's just life. Sometimes it's going forwards, sometimes backwards, sometimes stationary. That is outside of our control. All that we can do is to keep running.

Don't try to make sense of what is senseless

I've been reading Lance Armstrong's autobiography - "It's not about the bike". He is an incredibly inspiring individual, and his story (of surviving cancer, and going on to win the Tour de France seven times,) is gruelling to get through, but rewarding when you reach the end. Much like a cycling race.

I really like the way in which Armstrong reminds us that cancer is senseless. It made me realise that I still try to rationalise it, and give it meaning. But, as Armstrong points out, cancer has killed many positive-minded people who were determined to beat it; whilst it has spared many who had little will to carry on living.

It's tempting to give cancer a meaning, and imagine that we can control the outcome. But, whilst there are surely things we can do to improve our chances, ultimately cancer is a pretty random thing.

Lance Armstrong's strength of character helped him and his family get through the treatment, and it's what enabled him to go on and triumph at the Tour de France. But he was also extremely lucky, and he knows it. He has a really big ego, and he's quite up front about the fact that he's rubbed people up the wrong way during his career. But his cancer was neither a punishment, nor a reward. It was just some random thing that happened to him.

We can't control what will happen to us. We may or may not get a cancer diagnosis. We may or may not survive. What matters is how we respond to the challenges that life throws at us, and what we do with the time that we have. There's no meaning to cancer - all we can do is focus on the meaning of our own actions.

Savouring life, like a glass of fine whisky

I remember my first sip of whisky, and the intense feeling of disappointment I experienced when I discovered that this was what all the fuss had been about. I had expected it to be smooth, sweet and soothing. But it tasted dry, bitter and acrid. Not what I had expecting at all.

Life is not like a bowl of cherries. And nor should it be. It is not always attractive and sweet. Its pleasures are not always immediately accessible to grasp. Sometimes things don't go the way we plan, or the way we might have hoped.

I certainly hadn't been hoping for cancer. But the experience of treatment and recovery added a new layer of depth, meaning and intensity to my life that I am profoundly grateful for.

I remember one day when I came back from hospital, having heard that the chemo wasn't working, my tumours were getting larger, and that I might need a stronger treatment. It was the moment when I first realised exactly how serious my situation was, and I started to anticipate my own death. I sat down on my bed and wept. My partner rushed home from work, and held me. That moment sticks in my mind intensely, to this day. And whilst, in one sense, it was one of the lowest points in my life, I also cherish that memory. It brings tears to my eyes now, just remembering it - but they are not tears of sadness.

Whisky is a complex blend of flavours, some bitter and some sweet. It is this rich combination of accents that come together to produce a warm, rounded harmony. You can't enjoy whisky without its bitter notes, any more than you can enjoy life if you attempt to overlook adversity: the setbacks, challenges, moments of despair and loss.

We can't control what will happen to us. We need to let go of our expectations, and experience our life for what it is, finding the meaning in each moment as we go. I truly believe that the secret to happiness lies in learning to savour our lives like a glass of fine whisky - embracing the bitter notes along with the sweet - and recognising the exquisite perfection of our life as it unfolds. One sip at a time.

Tales of everyday hypnosis

When we think of hypnotism, it usually conjures the image of a stage hypnotist, or a 19th century therapist, mesmerizing his patient, by swinging a watch on a chain. But in reality, hypnotism is far more commonplace, and far less dramatic. Consciously or otherwise, we're all hypnotizing each other, all the time, influencing each other's behavior, for better or worse.

Hypnotism is concerned with suggestion. In all forms of communication, we routinely embed multiple layers of meaning. For example, if I say "I'm fine," whilst frowning, I've simultaneously communicated two seemingly contradictory messages. It's down to you, the person with whom I'm communicating, to reconcile them. Sometimes this will be done consciously - you might notice the frown, and realize that I may not be fine. But on other occasions, you may become aware of the frown without consciously thinking about it. As a result, the frown may affect your behavior without you even realizing it. Or in other words, you may be hypnotized by a simple facial expression.

For example, a friend of mine who had been going through a tough time, was planning to go on a vacation to get away from it all. However, when a well meaning person told him that "he could not take a vacation from himself," this advice gave him pause for thought.

The statement is really just a tautology. To say you can't take a vacation from yourself is really nothing more than saying that you will always be you. So what's the underlying meaning in this statement? Simply this: if you're miserable now, you'll be miserable on your vacation as well. What this advices does is to embed a tenuous premise on top of an unchallengeable statement. Of course, you will always be you, but this does not mean that you can't change your mental state. The premise of the statement deliberately frames the situation into one where change is not possible, and as such, it is disempowering. If the person who said it intended to be well meaning, then you would have to question their underlying, perhaps subconscious, motivations.

What is absolutely key in these situations is to consciously process this type of statement, and to identify the embedded command that is piggybacking on the message, in order to ensure that we don't unwittingly allow ourselves to be programmed in this way. For if we accept other people's framing of our situation, we will begin to limit the scope of what we believe to be possible. As a result, an initial positive idea - like going on a vacation in order to get away from it all - becomes doomed to failure, because we unconsciously accept that we will not be able to change our own frame of mind.

This fact was brought home to me personally, when I was awaiting the results of my cancer staging, which would determine what treatment I required. It proved to be a very difficult case for the histopathologists to diagnose, and as a result, I had to wait a long time for the results. When I called the hospital to ask if there was any news, my nurse apologized that there wasn't, and said "you must be out of your mind with worry."

My nurse was a fantastic emotional support to me. Throughout my treatment, she did an excellent job - she was incredibly well informed, and always seemed to know exactly what to do. By saying that I must be out of my mind with worry, she intended to show empathy with my situation - to show that she understood how serious the situation was. However, what she had actually done was to communicate an embedded command - telling me, consciously or otherwise, to worry. This was a rare occasion where my nurse had got it wrong.

Fortunately, I identified the command, processed it and rejected it. The most effective way of dispelling this kind of hypnotic suggestion, when it arises within conversation, is to challenge it within that same conversation, allowing your unconscious mind to be programmed by your own consciously positive words. I explained to my nurse that I wasn't worried, it was actually reassuring that the histopathologists were taking such care in arriving at a diagnosis.

There were many challenging times ahead for me when the diagnosis finally arrived, but I can honestly say that I didn't go "out of my mind with worry" during those weeks before it was confirmed. However well meaning the advise of friends and family may be, we should always take care to look out for these kinds of hypnotic suggestions, and dispel the negative ones, before they can take hold.

Finding hope in the most unlikely of places

It's easy to despair - to lose all hope, and begin to question the meaning of our lives, and the world we live in. There are times when we're challenged to the core of our being. Moments that cause us to question the purpose of our existence. Whether it's bereavement, rejection, conflict, sickness or loneliness, at these moments we suffer, as we struggle to find the strength we need to carry on.

Some turn to religion for this strength. And it can help, if it provides answers and offers hope. But what if, like me, you are not religious? Who can you turn to if you don't have religious faith?

Two years ago, when I was diagnosed with cancer, I was told that I would need chemotherapy. I think that I was more frightened than I had ever been in my life before. But I found the hope and strength I needed to get through it from a place that I never expected.

Chemotherapy is normally pumped into your body through a needle. The nurses hook you up to a machine, and leave you sitting there for an hour or so until you're done. It's poison that they're pumping into your veins. This doesn't hurt at the time, but it can make you feel unwell afterwards, and a week later, just when you're starting to recover, the nurses will pump more of the stuff into you.

And so we all sit together, me and my fellow cancer patients, in a big room, staring at each other as the pumps do their work. We're all in the same boat. You have to be pretty sick to need this stuff. We're all very scared, but you wouldn't know it to look at us there together.

Because in that room - the medical day unit - there is a kind of dignity, camaraderie and compassion that I don't think I've ever experienced in my life before. Everyone is remarkably brave and composed, considering the circumstances, and I realized at the time that we were all drawing this strength from each other. From strangers. All it took was for us to sit together, and take our medicine together. Providing each other with this companionship cost us nothing, but helped us more than I can say.

Looking back, I realize that these are the times and places where we can find hope - regardless of whether we have religious faith. This free and willing exchange of kindness between strangers, in the worst of situations, tells us everything that we need to know about the true value and meaning of the human condition. Hope needn't be a supernatural force from above. It's something we share between us, and the best place to look for it is in the kindness of strangers.