Bohemian Rhapsody - Triumph and Disaster.

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Is this the real life?

October has been a month of contrasts.

On one hand, my weight loss programme feels like it has stalled. On the other hand, I achieved something which until the last few months seemed not only utterly intangible, but ridiculously impossible impossible.

Let's start with the disappointing news. My weight has not changed since July - that's three months where I have not lost any weight. I feel like I'm doing the same things, but am I? Really?

It's easy to lose focus when lots of other things are going on and I have been busy with life things recently. I think the bare truth of it all is that I need to re-summon the discipline and focus that led to so much success in the first half of this year.

Is this just fantasy?

Earlier this year, I walked 9 holes of golf, and was over the moon that I had achieved it. It was difficult and I felt rough for a few days afterwards, but it felt like a huge achievement.

Emboldened by that achievement, I set myself the goal of walking 18 holes by the end of the summer. For the vast majority of people reading this, walking about 6 miles round a golf course isn't that big a deal. But, one of the consequences of having my type of leukaemia is that my blood does not carry oxygen around the body efficiently.

Normal people have blood that wanders round the body and acts as the body's police force. It attacks invading viruses and infections, it regulates the body's temperature, and heals and replenishes tired tissues and muscles. Red blood cells carry oxygen around the body which helps muscles to keep going. As the oxygen in our muscles gets spent, they get tired, less efficient and eventually refuse to work resulting in cramps, lactic acid build up and loss of muscular control (so we fall over or stagger like a drunk student in Fresher's Week).

But if the blood does not carry oxygen efficiently (as is typical for patients with CLL), exhaustion and muscular failure comes far more quickly. So, back in the late Winter of 2026, the prospect of walking the 6 miles that it would take to get round The Hertfordshire Golf & Country Club seemed about as realistic as sprinting up Mount Everest with an elephant named Bruce strapped to my back.

Throughout the summer, I worked hard on improving my stamina. My treadmill took a lot of punishment. But it dawned on me fairly quickly that even if I achieved the physical threshold sufficient to complete my own personal Everest, my greatest barrier to success would be the management of pain.

Caught in a landslide... [of pain]

Those of you who have subjected yourselves to reading his drivel over a number of years will know that managing pain is perhaps the greatest challenge I face. When it hits, it hits like being caught in a landslide where the only focus is fighting through the worst of it. I can deal with the consequences of having leukaemia, vascular dementia and anything else that comes my way, but fighting chronic pain is another battle altogether.

So, recognising that I needed more arrows in my pain-fighting armoury, I persuaded my wonderful medical team to help be undertake a course of cognitive behavioural therapy. Again, those of you who have been with me for a while will know that my focus for managing pain has been mainly two-pronged attack: The use of analgesics and muscle relaxants and the use of tactics like meditation, distraction and mindfulness.

Each of those work to some extent but the reality is that when I get a bad pain episode, it can last upto 72 hours and nothing really stops the destructive avalanche.

No escape from Reality

So the purpose of undertaking a course of Cognitive Behavioural Therapy (CBT) was to try to find another tactic to better manage pain. For over a decade, my focus had been on fighting the pain. I am a problem-solver by nature (which is what made me a good Director of Organisational Transformation), but I cannot escape the reality that my pain is not something that can I can solve. So Emran (my wonderful therapist) helped me to change the nature of my relationship with pain. Previously, once the pain hit 10, the most I could do would be to crawl up into a ball, sometimes scream and shout, sometimes weep but normal daily life would essentially cease until the pain episode diminished.

But following the CBT sessions, instead of trying to solve it, I accepted the reality that it was there, and I proactively chose to get on with my life. Ok - so maybe I would be somewhat diminished because of the pain (so I could only do an hour's gardening instead of two). Maybe I would find it harder to concentrate on the plot of a movie or TV programme, but I would chose to do so, rather than simply give in to the pain.

Open your eyes,

I can't pretend that it was an overnight success, but as the weeks went by (I had 13 weekly sessions and others as needed), I started to become more resilient at not simply hitting my personal pity party when pain hit 10.

It's not that the worst pain episodes aren't still utterly debilitating and morbidly depressing - they are. I'm just better at acknowledging it's presence and choosing to try to live a constructive life instead of just giving in to it. And as I continue to improve in my use of the CBT outcomes, it has allowed me to contemplate undertaking things that previously were nothing ore than aspirational pipe dreams. Like walking 18 holes of golf.

Look Up to the Sky and see

By late summer, I walked the full 18 holes with Karon - but I played off the yellow tees. Playing off the white tees however, would be a whole new mountain for me to climb. It meant a lot more yardage, many more hills and a massively greater impact on my physical and mental resources.

My goal was to play in a full men's competition off the back tees by the end of summer. It seemed a ridiculously impossible goal at times. By late summer, I realised that this wasn't going to be simply a physical challenge, It was going to be a mental one, and unless I got 'my head straight' I was going to fail. I had built the physical strength but did I have the mental resilience to keep going and step outside of my comfort zone once the pain levels started climbing...?

Any way the wind blows...

So if you want to know how it went, have a watch of this...https://youtu.be/8oWEu--kOqw

And in all things -