Of Ownership 

I don’t really play computer games anymore, however as a teenager I did quite frequently. The geeky phrase to say when you successfully beat another person online is “owned”. It’s saying that you are so much better than that person that you literally possess them. The only game where I’ve played enough and practised enough to really “own” someone was Command and Conquer Tiberium Sun. Playing it most nights when I was 12, mostly online as long as the connection held out (good old dial up). I got to the point of being so good at it that I would be accused of cheating after my disrupters had very quickly landed next to an opponent’s construction yard. But to get to that game winning point so quickly there were many things you had to do as fast as possible, and many tasks simultaneously. Everything was well thought out, every small gain sought after and achieved. 

So how is this relevant?
A computer game is a reasonably pointless thing to succeed at. But lots of things in life require you to focus on those small margins which improve the outcome. Take the British Olympic Cycling Team, a team at this year’s olympics in which every single person won a medal. It got to the point where as a spectator you still cheer, but you expect victory. What makes them so much better than the other teams? It is because they’ve focussed on every little margin. Every marginal gain they can think of they have done, I’ll give you some examples:

  • They had their facilities reviewed by a sleep expert the consequence of this was that on average they sleep 40 minutes more a night. 
  • They’re all taught good hand washing techniques to prevent the spread of infection.
  • They’ve all seen a sports psychiatrist to work on their individual “thoughts of failure”. 
  • After events and training they wear heated hot pants to prevent their muscles seizing up afterwards.
  • They also record all sorts of data from the bike so they can thoroughly assess each cyclist. This is formulated into a ‘power curve’ for them to aspire to. 

All this leads to more effective training and a culture of success. Giving that little bit extra, each little bit added together to give an increased chance of success. 

I don’t know why I am still alive, but my cancer nurse specialist, told me recently that the team are very impressed at how well I am doing at the moment. However she went on to say “we had quite a few young men on our list who were really ill about the same time as you at the beginning of the year and… that they’re all not here anymore.”  I took this as motivation. It strengthened my resolve to keep focussed and to keep going. No one wants to be defined by their cancer but for someone like me who had an exceptionally large amount of cancer and the most ruthless one at that, lifestyle sacrifices were necessary. Giving up meat and alcohol, taking Bifidobacterium pills, exercising, eating less and taking vitamin D and calcium supplements. Furthermore I’ve ended up under the best melanoma team in the world, fallen in love, I have an exceptionally supportive family, and I’m on the Melanoma Mates Facebook page. As the team have seen the most melanoma patients they’ve in effect got the most data either from trial or some anecdotal, but when treatment is so new you need that anecdotal experience. Despite having had countless appointments, I’ve only gone alone twice and these were both recently when they all know I am fitter and able to manage. Loneliness is a huge cause of stress, and thanks to Georgie, my family and friends I’m definitely not that. What better way to supercharge your immune system? Lastly the Melanoma Mates Facebook page is full of success stories (and lots of awful ones too) but it shows that it is possible despite it being very hard, that success is contagious and increases collective positivity. What you don’t need is any negativity in your life. 

I’ll clarify the loneliness point, what I’m referring to is the “Roseto Effect” named after the town in Pennsylvania after a cardiologist who moved there in the early sixties. He noticed he was not very busy. He worked out that the rate of heart disease was half of the American average by looking back at old records. A large study team came to the town  to find out why. They found that they were actually more unhealthy in terms of higher rates of smoking (typically cigars), obesity and sedentary lifestyle. They compared the results from two other nearby towns too. As it was largely an Italian community, they thought it could be the Italian diet but no, they ate more fried food than the other towns. They whittled it down to just one factor being the most important, people in Roseto weren’t lonely, they lived in multi-generation homes and had a great sense of community. This was confirmed as time went on and the town became more “American” i.e. More single parent homes, the younger generation moving to big cities… the town subsequently got more unhealthy and it took until 1971 before the first Rosetan below the age of 45 died of a heart attack. 

There are things I could be better at such as having a more stable routine and sleeping better. I accept that some of these margins I’ve done lack real clinical data, so as a caution check with your doctor first, but there must be a reason why I’m still here. I’m not just stage 4 I’m stage 4+++. There are very good reasons why my case been presented at two conferences and is being submitted to a very prestigious medical journal. That reason is that I am currently achieving the impossible. My case has literally broken all the rules. My ongoing survival could be for a simple reason; Ipilimumab. Somehow I’ve had success despite my immune system being decimated by high dose steroids and mycophenolate mofetil, both immunosuppressants. Moreover my tumours have not grown anymore despite not having had any active cancer treatment since April. Immunotherapy works by unmasking the cancer from the immune system so it can recognise it and attack. Theoretically this shouldn’t have happened due to the large amount of immunosuppression. I repeat, this was scientifically very unlikely. I feel that the lifestyle changes have given me these small marginal gains and have helped me to achieve and maintain stability. This is confidence boosting. I can feel that I did something to achieve that… I’ve taken ownership. Instead of being defined by my disease I’m defining it. I feel in charge. Obviously I know that this could all change overnight and melanoma could ruin life again.

It’s too easy to be defined by your disease, I’m a cancer patient therefore I am. I don’t buy that. If you are a patient please make an extra effort to understand that your enemy, this disease (whatever it is) is just an opponent and therefore there must be ways you can more effectively manage the disease. A good insight into disease I admit is easier for me, being a doctor, but it is vital for everyone. For example when I had manic episodes on steroids at the start of the year the insights Georgie and I had into what was happening made them less scary. The best example of this is someone with chronic pain (please see on IPlayer “The Doctor Who Gave Up Drugs” as an example of this). A lot of people suffer from daily pain every day and despite many investigations and specialist input no cause is found. This pain is completely debilitating. What’s happened though is they’ve let the pain define them. Many patients get obsessed with wanting a diagnosis and the pills they take. Yet taking pills and being heavily investigated reinforces the feeling that they are sick. What they actually need to do is learn about their disease, have the insight to accept there is nothing that needs fixing and that it is an awful self fulfilling cycle. For example, your shoulder hurts so you stop moving it, it becomes stiff, so you move it less, you overuse the other arm and then that gets sore… Eventually everything is in pain and that’s all you can focus on. What needs to be done is to be less medicalised, take your disease by the scruff of neck and really own it. Move through the pain, understand that by moving you are not causing any damage, just pain, and be determined to carry on. When you realise you are a month down the line and you are taking less pain killers than ever, that’s an outcome you’ve achieved. In effect you’ve taken ownership of your disease and you’ve stopped being a slave to it. I hope you agree what I’m doing is not “cheating death”. Like the computer game Tiberium Sun, there is no “cheats”, my opponent has fought me to the brink, but I’m owning it, for now.

A couple of additional points

  1. Georgie and I watched the next episode of Grey’s anatomy, series 6 episode 1. It turns out Izzy actually survived her melanoma despite going into cardiac arrest (the heart stopping). An entirely implausible outcome… but that’s Hollywood. 
  2. Shout out to Sandeep. 
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2 thoughts on “Of Ownership 

  1. Great to see your post ! You are an inspiration. If only your disease was as simple as a game , space invaders was as far as I got and fiery Phoenix , I’d personally blast it away……….

    Like

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