Rise up this mornin’
Smiled with the risin’ sun
Three little birds
Pitch by my doorstep
Singin’ sweet songs
Bob Marley

The first three months of a clinical trial over and I am so very grateful that other than some inflammatory response resulting in some very painful joint and muscle pain at times and a few days of sickness and diarrhoea I have been healthy and managed to remain positive throughout (even if I may have looked pretty dreadful at times).  I have actually only felt ill for a fraction of these three months.

No musings on the past today, my thoughts at the moment have turned to the present and indeed the future with this milestone in my treatment journey. 

Living with Chronic lymphocytic leukemia doesn’t mean that I step back and take it easy, no it means that I need to step up a gear, there is a lot to achieve, many plans and ideas to see through. And I am fortunate to have built a strong foundation to build on.

It does mean that I should spend time looking after myself though. By that I don’t mean focusing on the ‘work/life balance’ whatever that strange and over-used term means.

I am truly fortunate to work in an industry that I love and throw myself into all sorts of projects that I get a huge amount of fulfilment and job satisfaction out of. There are of course ups and downs and occasionally I cross paths with people who are simply in the business for selfish career progressive reasons as much as they pretend to care for what they do.

In my humble opinion these are truly the worst sort of people who would sell their gran to climb that next rung of the ladder. These people are the only ones who ever cause me to lose focus and become disillusioned. People who are best avoided where possible.

I am not saying that there is anything wrong with wanting to achieve, to be successful. It’s just the approach that some people take, spending much of their time on putting other people down rather than focusing on making themselves better at what they do.

On the whole I can say that I don’t really feel that I have ‘worked’ a day in my life (as most people would describe work) The many changes in direction and constantly welcoming change, and the huge variety of projects certainly help.

Its so very true that I have not, in the past, taken proper care of myself particularly in the area of getting enough sleep (I recently read ‘Why We Sleep’ by Matthew Walker which is a fascinating look at the effects of not sleeping enough and of not getting the ‘right’ type of sleep). I am guilty as charged.

I work in an industry that is notorious for long working hours and for example I once did a 60 hour shift to ensure a show opened in time. This is an extreme example but regular 15 hour days seven days a week were, and sometimes are still fairly normal.

Fortunately European working time directives forced the industry to take a long hard look at working practices and generally the industry has got much better. We can only hope that recent events don’t allow this to reverse direction.

I have always exercised regularly and eaten relatively healthily. Although I have a ‘sweet tooth’ stemming from poor childhood choices. For example when out for a meal I will choose my main course after deciding what desert I fancy.

I put my ongoing good health down to the ‘accidental preparation’ for this medical adventure during the past few years. Regular exercise, healthy diet and a positive attitude and  gratitude for everything I have and have achieved.

Having completed these three months I am now in maintenance!

I recently discovered that ‘maintenance’ is effectively carrying on treatment now we have reached a pinnacle to the dose of medication I am taking. I have been looking forward to getting back into the gym but it looks like the high risk of internal bleeding and bruising will continue to be a possibility so this may not be a good idea just now. 

So I am looking forward to getting back into Yoga and running (although fast walking maybe more of an accurate description) as a first step and then lets see what happens. I am also thinking of getting a bike!

‘Work’ wise we have some really interesting projects on the go and I have had a lot of time to dream up weird and wonderful ideas. Watch this space…. 

See you soon, take care, be kind…

 

 

 

 

 

And if you have a minute, why don’t we go
Talk about it somewhere only we know?
This could be the end of everything
So why don’t we go
Somewhere only we know?
Keane

I would spend a great deal of time in the tiny library in Upton, the Yorkshire village where I was born. It was a part of a small but very well used High Street that included a general store, a newsagent, florist, butchers shop, hairdressers and on the opposite corner, Greens. I assume named after the owner who would sell pre-packaged ‘single cigarette and two matches’ to children getting off the school bus. 

They would rarely have the books I wanted to read, but as explained to me by one of the helpful librarians you could ‘request’ a book. A simple process of filling out a postcard with the book title, the ISBN number would help I was told (I was fascinated by this identification of books once I had discovered it) And I would need my dad to sign it too.

A couple of weeks later books would arrive and I would set about devouring their contents. My choice of books at that time was politics, religion, ghosts, the occult and Dickens (and of course as many Marvel comics I could lay my hands on) And that was about it.

I learnt about Alistair Crowley (and still have a set of the Tarot Cards that he designed) Harry Price the great ghost hunter. I also ordered Das Capital, Mein Kampf, The Communist Manifesto and numerous similar books.

Looking back it makes me smile to think I would have the Bhagavad Gita, The Devil Rides Out by Dennis Wheatley and Great Expectations on the go at the same time, for example. 

Some years after this library was closed down I bumped into one of the lovely librarians. Now retired. She told me that I was the most reported customer (the years between being 10 and 13) at the library. “I don’t understand” I said.

She explained that it was Government policy to report people who ordered or took out ‘politically sensitive’ books from public libraries.

Many years later I was fortunate to work for a number of arts companies who were touring work abroad, and for about 10 years I got to travel extensively. Sadly gone are the days that a choreographer would call me and say “Hi Pete, I am in Bilbao at a festival and completely underestimated the technical aspect, if I book you a flight could you be here in the morning?” Mmmm let me think about it for a minute?

I have so many great memories of being abroad, for example travelling across huge expanses of the USA in a tour bus going from one extreme weather condition to another in a few hours. Seeing parts of the country that tourists would rarely see, meeting people they would rarely get the opportunity to talk to.

Being taken to the rooftop of a theatre in Florida to watch the sunset. Work stops at this theatre almost everyday for visitors to share this experience.

Seeing amazingly beautiful and historic cites in Europe, especially in the countries that when I was growing up were in the ‘eastern block’.

With the daily propaganda of the ‘cold war’ years I would never imagine I would see these countries in my lifetime.

I discovering that my favourite country in the world is Japan, a beautiful country where the culture is simply superb. 

Probably the most thought provoking moment though was an afternoon spent in Fuxing park in Shanghai sat on a bench looking at the Statues of Marx and Engels contemplating what they would think of modern day China.

How I would of liked to sit with them and discuss the sites and experiences that I had witnessed over the past couple of weeks in this awesome country.

The phrase that springs to mind from my travels ‘There are no strangers here; only friends you haven’t yet met’ 

I miss travelling more than anything, especially as I am not supposed to be more than a few miles from the hospital, however I have so many memories to keep me going for now. 

It has been a challenging week and indeed it would have been unwise to travel more than a few seconds away from a toilet. Following my consultant meeting on Tuesday I have been taken off the Ventaclax for a week to give my body a few days to recover from five days of sickness and diarrhoea. Not sure If I caught a virus or if it was a side effect of the increased treatment.

Probably about two weeks of this stage of treatment to go and we will see if I am at maintenance level! Whatever that may be? Time will tell. 

My Audible and Scribd accounts are running into overtime. I am devouring more books than I have in years and loving every second. My reading material however is very different to that in my youth. Well mostly.

May see you soon, take care, be kind…