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…




I see the stars, I hear the rolling thunder
Thy power throughout the universe displayed

Then sings my soul, my Saviour God, to Thee
How great Thou art, how great Thou art

 Stuart Keene Hine 

The midwife very calmly ask me if I could reach down and hold the baby’s head. It had been 6 hours of contractions now, with Jan falling asleep between these for the last 30 minutes or so. I reached down and held it’s head in my hands (we still had no idea if it was a boy or girl). Once my hand was gently giving some support she calmly asked me if I could also reach the wall and press the large button with my other hand, I did so and within seconds the doors burst open and the room was filled with people whom all appeared to have a very particular purpose, all were very busy ‘doing things’.

Just three hours earlier Jan, just starting on the gas and air, had been trying to sell the midwife budgie seed, “It’s the best you will ever smell” was her final effort at convincing her. She was offering it to her in bulk at a very good price. I could tell she wasn’t herself. 

Although only the baby’s head was showing the mid-wife was already at work with a pair of scissors slowly and carefully cutting away at the umbilical cord that the baby was wearing like a scarf. Once cut the baby slipped out lifeless helped by a couple of the strangers who had magically appeared. It was taken over to a table across the room, I couldn’t see what was happening for the amount of people surrounding the table.

Jan woke and looked at me in her pained, drug induced state whispered “it better not be dead” then fell back asleep. 

A few seconds later I heard the cry followed by the midwife asking  “what are you calling her?”

“Isabella” I said, and then looked around as if to see who had just chosen this name. 

One of the strangers handed her to me and I cuddled her until Jan woke, the room emptied as quickly as it had filled, it was all a little hazy.

For the past 13 years, as a small act of gratitude I have happily given up a couple of hours of my Christmas day to help the amazing team at Swan Bank Methodist Church deliver meals out to the Community. 

On Christmas day after the morning services the team feed up to about 150 people in Church and over 100 meals delivered out to the community, it’s an incredible example of people coming together to serve the those in need on this special day of the year, a well organised army of volunteers help to make it a reality.

I think that there is a great misconception that because you are doing things to help people it will be easy, maybe a guiding hand to look after you. Well I have always found the truth of the matter to be the opposite, the more you put yourself out for others the more challenging it can be. But we grow and we learn from those challenges, that I believe is what life is about.

It also helps I think if you have a sense of humour, and can find humour in the darkest of places. 

This will be the first year since Issy was revived at birth that I have not been a small part of the team. I will miss it but will be thinking of all those helping and of past experiences. 

Some of the strongest memories begin when there is no answer from the knocking at the door. After an increasing louder knock the door opened, it wasn’t properly shut, and there was no answer when speaking and then shouting “hello, we have a Christmas dinner for you” We slowly walked down the hallway to the closed door repeating the greeting. We could hear the TV was on at a high volume. The door at the end of the hallway was pushed open and there he was, a man in the later years of his life, trousers around his ankles, bottle of whiskey in his left hand and his right hand giving himself a special Christmas treat! You would think he would wait for the Queens speech at least. 

I will not forget the old ladies and gentlemen holding back the tears of gratitude as you lay out their dinner and place additional food in their fridges for later or the couple who gave me a lecture about how its all the fault of the immigrants. I bit my tongue and didn’t tell them that some of their dinner would have been donated and prepared by the very people they place all the blame on (whatever it was that was so wrong that they had to find blame).

But mostly I will miss ‘wet paint boy’ who I had the pleasure of delivering to for a number of years. He couldn’t let me in because the flat had just been painted and he didn’t want me to get paint on my clothes. He would gratefully take the dinner etc from me at the door.

At first I wondered if it was a bit like the Forth Bridge, once the last wall was painted he would start again at the beginning. However it was clearly odourless paint.

Lovely lad with a great smile. It would always be my last delivery before heading home for my Christmas dinner. 

Last year Issy eventually came with me, that was a very special day and not without its laughs and tears. A number of people have accompanied me over the years and I am very grateful to all. i hope they too got something out of it.

Next year I hope to be back on the team.

38 days into treatment and no real change to the last post. Spotty and aching slightly in my left hip and right shoulder and back. Other than that i am feeling pretty fit and healthy. 

See you soon, take care, be kind…