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…





Better stop dreaming of the quiet life, ’cause it’s the one we’ll never know
And quit running for that runaway bus ’cause those rosy days are few
And stop apologising for the things you’ve never done
‘Cause time is short and life is cruel but it’s up to us to change
This town called malice
Paul Weller 

It is the 1980’s and I was back from London, where I was studying by day and working on west end shows by night. I was returning for an evening for a friends birthday. The venue was a working men’s club in South Kirkby a village in the community of villages where I grew up. 

I remember it was a fun evening catching up with lots of people I had not seen for some time.

At the end of the night walking down the road from the club I heard raised voices behind me, then the words I have never forgotten when they were very close

“that’s him, works in theatre, must be a puff”

There was a boot in my back and I went down, there followed a series of boots to my face (Brave folks these Yorkshire miners, don’t let anyone tell you different) Friends appeared to put a stop to any further damage and the perpetrators ran off.

Needless to say I was taken to hospital and patched-up. I still carry a V shaped scar on the bridge of my nose as a reminder.

I will never know if they were just out for a fight, a common pastime in the villages, or if the thought of me being Gay was reason enough to inflict physical harm.

It was however cause for reflection.

I have talked before about dad’s influence on my upbringing and his basic believe in equality for everyone, however homosexuality never came up in conversation. Dad part 1

I discovered late in life that one of dad’s brothers was Gay. Most likely due to their very strict Catholic upbringing that they had endured he never ‘came out’. He would also have been dissuaded by local cultural thinking. He must have led a pretty lonely life in that village. I only ever met him a handful of times growing up but I wish I had known him better.

He died about 4 years before dad, in his house and it was about 2 weeks before anyone discovered his body. I don’t know if dad knew that his brother was Gay until after his death. But I digress.

I got on with my theatre life back in London, then Manchester and then Northampton with a few minor diversion inbetween. 

Incidentally it included an interview at the New Vic Theatre long before I was to settle here and make it my home. I was being interviewed by a  panel of people when Peter Cheeseman joined us at the table. 

It went very quiet whilst he picked up my CV and glanced at it. You could hear a pin drop.

“25” he shouted, “shouldn’t you be chief electrician at The National by now?” 

I smiled and quickly thought I could reply with a similar question however before I could think of a more diplomatic response he spun my CV onto the table, got up and walked away.

Peter did a lot of incredible things for theatre in North Staffordshire, a man that theatre lovers should be very grateful for. However my impression of him that day was somewhat different. In hindsight I do feel honoured to have met him even under those circumstances though.

The Theatre Industry is generally a very welcoming place for everyone regardless of race, gender, class or sexual preference etc and you quickly meet people of all kinds. It doesn’t take long to stop seeing the difference and just get on with what we have in common.

I had over the years attended church services, of all types and denominations  including Spiritualist and Scientology, I guess I was always looking for answers to those basic questions.

Regular visits to services in Anglican and Baptist churches ended abruptly when I was invited to witness a friend have a full submersion baptism. 

It included a sermon from a visiting pastor who was convinced that all the countries problems were the fault of the ‘Blacks’ and he had no problem in voicing his opinions as the word of God. 

Not quite believing what I was hearing I remembered that the Church of England was once a big supporter and benefitted financially from the slave trade. Maybe opinions of things in Stoke on Trent had not caught up yet? I was pretty new here after all. Something I read recently stated that “it’s scriptural truth that’s important and the church should not bend to what society thinks” 

I am sure that William Nibb would be turning in his grave, as would all religious leaders who were swimming against the tide on this major issue of their time.

I didn’t step inside a Church again for worship for almost seven years.

It was a chance meeting (that turned out to be not so chance) with a Methodist Minister that got me back into regular church attendance. I liked what I was hearing from this person and his group of friends. I also wished for my very young daughter (I have spoken before about how her birth was a very spiritual occasion for me) to have a church family, the support that can bring and a religious education.

We attended this church for many years, I was there to learn and get something from the experiences and not to use my skills and knowledge to help out in a technical sense, I enjoyed just being a part of the congregation. Due to my involvement though I was to get involved with many other religious events. 

I became aware of some very odd beliefs that I mistakingly thought you could only read about in history books, most notably the ‘gay’ debate and the limited role women should play in the role of the church. I struggled with these concepts.

side note: the belief in creationism, which is widely believed in the Stoke area is so ridiculous that I don’t waste any of my time thinking about it.

I did discuss and give my opinion on the LGBT conversations when I felt the need to challenge the opinions when voiced.

It became very clear to me that this always starts as prejudice, then people find and interpret scripture to support their prejudice, in absolutely every case I am aware of, and there are many.

Very similar I would think to the ‘slave’ debate and the churches viewpoint in years gone by.

I was slowly but surely ostracised by some in the church as my opinions became known. The most obvious was when the church was organising a trip to Auschwitz (a bucket list type thing for me) My many e-mails went unanswered and my phone calls ignored until finally I was told the trip was full – sorry!

Terribly disappointed I carried on giving my support including building a networking event to promote the newly built Lottery funded cafe on site, all be-it with much less enthusiasm maybe. 

A short time after when the law on same sex marriage changed the application form for a venue to apply to conduct weddings had a new tick box ‘same sex marriage’

The Methodist Church instructed all its churches not to tick this box and ‘my’ church council agreed. This marked the end our regular attendance. 

When discussing with Christians phrases I often hear on the subject of homosexuality ranged from

“its an abomination, that’s what the bible says” delivery with wide eyes a red face and a definite air of violence on most occasions


“well I’m very open to ideas but if I was asked directly I would have to refer to scripture”.

At the core of this thinking is a prejudice that they probably learnt as a child, a fear and lack of understanding that they carry inside, not scripture, simple! stop lying to yourself, face the truth. 

To put it in terms that my Christian friends will understand (the rest of you can role your eyes as I often find myself doing)

Nobody is interested in your narrow minded prejudices, least of all God, because it gets in the way of God’s plan for you. It places a stain on any good works you do because it is poisoning your soul. You are ‘fishing’ with hate in your heart and toxic bate. Nobody is interested except of course the private members club that you are turning your church into.

I know many people here in my adopted community that call themselves Christian’s and are ‘churched’ in one way or another. I really would be lost without their support over the years and I would count them amongst my close friends – my very closest friends.

I have also many friends that follow different religious paths, Muslims, Sikhs, Hindus and Buddhist as well as agnostics and atheists.

I love and respect them all equally, whatever their beliefs, however we just have to agree to differ on some issues. Giving the impression that all Christians are bad people because they have some ridiculous beliefs would be like saying that all Yorkshire Miners at thugs. Of course that’s not true. 

I am well into the addition of Ventoclax stage of treatment now and it only struck home this week that I would be spending a great deal of time at the hospital between Tuesday morning and Thursday afternoon as the dose is increased weekly. It really came as a shock this week, its like they think I have nothing better to do! 

I have to admit that this caused me to feel a little sorry for myself, focusing on some negative aspects of how my body is reacting, the chronic pain that I am constantly experiencing and my outward appearance. The wide range of thoughts I have been having whilst writing this blog have steered me into remembering the positive. And there is so very much I am grateful for. I have made a list, a private one, at least for now. 

If you are interested in learning more about the issues and damage that having a negative culture about LGBTQI issues within a religious context can have I can highly recommend Undivided  by Vicky Beeching. Sadly this book is not available in a lot of Christian book stores. 

If you want a very quick but powerfully sad insight into the worst case causation of these issues you can see a video by clicking here  (you only need to listen to the first minute to get the point)

May see you soon, take care, be kind…





Well we know where we’re going
But we don’t know where we’ve been
And we know what we’re knowing
But we can’t say what we’ve seen
And we’re not little children
And we know what we want
And the future is certain
Give us time to work it out
Road to Nowhere – Talking Heads.

There appears to be an unspoken understanding about the level of illness based on the car parking situation at the hospital.

I often arrive early for appointements and have a coffee, people watch and occasionally start up or join in conversation with strangers. There was a conversation about the cost of parking and a lady turned to me and asked how much it costs me each week? I get free parking I replied. She reached out and touched my arm, “oh I’m so very sorry” she said “how are you feeling”? 

There was a void. I time between having that first phone call from the doctor, the initial consultation and tests and obtaining a prognosis. Looking back this was the worst time. A couple of weeks of What if…?

I knew it was serious by the speed of action for the various professions at our wonderful NHS

This was now followed a period much quiet regarding communication, and a period of extreme, sometimes confused noise in my mind.

I didn’t discuss what was happening with anyone, it was a sort of ‘dirty secret’ .

I didn’t know what was going to happen so what was I going to say to anyone else? I maintained a calm approach externally whilst internally I was making plans for the worst case scenario, anything less than that, once exposed, would be a bonus.

Jan and Issy had been going to the WordCraft evenings at Bottlecraft in Hanley. Issy has been writing poetry since the age of 7, it is a passion of hers. We enrolled her into the New Vic youth drama groups at the age of 4 so she would have another circle of friends to those at school. She flourished under a culture of creativity and self expression and this early introduction to drama has stayed with her

She is now involved in after school drama groups three evenings a week. I am not sure exactly how or why she started writing poetry but I do know that she has a talent for it and wanted to go and see her take part in a Wordcraft evening.

I can find small gatherings of people like this more than a little scary. I cannot easily melt into the background if I am suddenly not feeling confident. I worried unnecessarily. 

I sat listening to people of all ages express themselves through their spoken word some funny, some sad but all thought provoking. It was, as was expressed often, a ‘safe place’. I was taken aback by the creativity from all, some clearly nervous but having what it takes to stand up and express themselves. 

Before long it was Issy’s turn and she strode up to the front full of confidence. gave an introduction to the first of two poems and delivered them both clearly and precisely without out a hint of nerves. Full of confidence about her creativity and her performance.

This was a room full of the best of people, a reminder of the incredible humanity that exists. People who I knew would help to nurture her talent should I not be able to.

following the poetry she chatted to people and ‘networked’ like she had been doing it for years, a complete natural. 

Worst case scenario thought one that evening, how do you tell your daughters that you have a terminal illness?

Worst case scenario thought two that evening,  well if it was to be I was tearfully confident that my work could be considered to be done, this young lady is ready to face the world.

This week I started the next phase of my treatment, the introduction of Ventaclax. A drug so powerful if they had got the dose wrong it could start killing the cancerous cells so quickly that my kidneys would not be able to cope and I could have immediate kidney failure. There was also the chance of allergic reactions. Comforting thoughts!

Consequently I have been in hospital a few day’s this week being observed. 

On Wednesday morning I took the first two Ventoclax tablets at the hospital, sat and waited to see what would happen.

My trial nurse decided to take my blood pressure. It was completely off the scale! 

“should we ignore that one and take it again in half an hour” she said laughing!

“good idea” I replied

Half hour later my blood pressure was normal (for me).

“I was probably the most anxious I have ever been in my life when you took it before” I said 

“you don’t show it” she replied.

“I think I did” I said…

May see you soon, take care, be kind…




Two scientists are racing

For the good of all mankind

Both of them side-by-side

So determined

Race for the Prize, Flaming Lips. 

Dad would have loved to have gone into politics but his speech impediment stopped him. Or more to the point the lack of confidence it caused. He was much happier writing. And writing he did. To Members of Parliament, local councillors and his favourite pastime for many years, the local newspaper. He would pick a topic (pre social media) and write about it in a letter to the editor. This would usually result in someone writing a reply with a contrary opinion and dad would write back. This would go on week after week until the editor would comment to close the subject. 

He had his time helping local politicians and councillors generally choosing independents of one type or another, never the two dominant parties. Those on the right would call him a lefty and those on the left a right winger. Although I never told him I admired his stance and his speaking out on matters that he considered to be wrong.

Dad was always fit, cycling and walking a lot. The walking was a pastime he had with his partner of over 25 years following mum and dads divorce. His mind was always sharp and he was incredibly reliable. A typical trait was once a persons birthday was in his diary they would recieve a card every year. This amused me as ex-partners would continue to receive birthday and Christmas cards. 

When on the 4th of May a card did not arrive in the post that should have flagged up a warning that all was not well. However as one arrived a few days later I didn’t give it too much thought. 

I would try and visit a couple of times a year and we would often go to Wakefield or Doncaster for Coffee. It was during one of these visits when it became obvious that something was not right. He said he was going to buy a newspaper and he would meet us in the cafe. After almost an hour, now a little concerned, he walked through the door, coffee now very cold. “where have you been” I asked “I don’t know” he replied, looking a little worried, “Have I been gone long”.

Doctors appointments were made and before long a diagnosis of Parkinson’s disease was given.

Dad appeared to go downhill rapidly from this point, eventually moving into his partners home so she could look after him They had always  maintained their own homes during their long relationship, both very independent people.

There were to be a number of hospital stays over the next couple of years each seeing a deterioration in his health and quality of life.

The call came on the 22nd of April 2015 saying that if I wanted to say goodbye I needed to get to Pinderfields Hospital now!

On arrival the doctor explained to me, as next of Kin, that in his opinion and given his condition the kindest thing to do was to remove life support and allow nature to take its course. His partner and her daughter were there and after a short discussion we all agreed.

He was quite agitated in a disoriented kind of way before they decided to drip feed him painkillers. I am pleased though that my eldest daughter managed to visit during this period. He was soon to lapse into unconsciousness. 

A private room was found and I guess I thought it would be a matter of hours. That night the wonderful staff appeared with a mattress and blanket and made it clear I was welcome to sleep on the floor of his room, tea, toast and conversation was also provided.

After the first night I took to nipping out in the mornings for the short walk into Wakefield and having coffee and toast at Costa. the same cafe I had first realised that something wasn’t quite right. Food would would arrive later in the day with partner and her daughter and they would stay for a few hours. Their presence was a great comfort to me. They had shared dad’s later life while I was a distant son.  

I was in the cafe one morning when two ladies came through the door and found seats at the table next to mine, I assumed they were mother and daughter. The mother clearly upset and the other lady asked me if i would chat to her whilst she went to get them both a drink. It turned out that they were not related. The younger lady had noticed the older lady looking lost and confused and approached her. She explained that she had arranged to meet her daughter but she had not turned up and was worried.

On chatting with the lady it became clear that she didn’t know her daughters or indeed her own name. She was not sure where they lived. Together after asking permission we checked her handbag and on a card was name and phone number of Carol – Daughter, with a short note explaining that the lady had dementia. 

I went outside and called the number, spoke to the daughter who asked if we could put her in a taxi and gave us the address of her workplace. We were happy to help, quickly briefed the taxi driver on the details and waved her goodbye. 

I went back to the cafe to get another coffee and as I sat down my phone rang. “hello this is Pinderfield’s hospital, are you anywhere near to us, I am afraid your dad’s circumstances have changed” 

Dad had passed away alone that morning. It had been seven days since removing life support with no water or food.

The death certificate stated ‘Parkinson’s related complications’ but I cannot help but wonder if he simply starved to death. On my watch. If he was strong enough to last seven days without food and water maybe he would have been strong enough to deal with surgery and treatment. I will never know. It has certainly formed my opinions on assistant dying.

He only ever gained consciousness on two occasions, both in the middle of the night. The first occasion I clearly heard him shout “get the Fuck off me” it went very quiet and whilst I waited for more words of wisdom I realised that I had never in my life heard dad swear before. He had great difficult with the letters F, P, S and Q in particular although this announcement was clear and without a trace of a stammer. It made me smile.

On the second occasion a couple of nights later I woke to hear him whisper “help me” a few times over. I got up and stood by his bed but there was no sign of consciousness by then.

His favourite times were spent in Scarborough with J, and one afternoon later that year we scattered his ashes on the cliffs by the castle.

Today marks 8 weeks since I had an alcoholic drink and tonight following the HoneyBox at the Archer I will be having a red wine with the team.

My thoughts have been with anyone, no matter what their ailment that has gives them chronic pain.

I am blessed that never before in my life have I been kept awake at night in pain, until this week. I think I have done well so far.

I had a CT scan and blood tests this week and I have a meeting with the consultant on Tuesday. I will be discussing pain relief.

May see you soon, take care, be kind…



But these tell tale signs are here to stay, and in the end you know that’s OK.

You will always be a part of my patched-up patchwork taped-up tape-deck heart.

Frank Turner

I was about the same age as Issy, thirteen when I came home from School to find mum having one of her crying episodes, no words just tears. It fell to dad to tell me that the electricity had been disconnected. Mum had been going through a difficult time with her depression and consequently dad had been taking a lot of time off to assist her. I didn’t realise at this time why he was reluctant to leave her alone. I guess I was not privy to the conversations that they would have. Another job lost some weeks previous (I didn’t know) and bills and rent to pay etc. 

The lasting-mark the social services made was a negative one to me although they probably had our best interests at heart I guess. Although they would not pay the bill or re-connection fee they did pay a grant for clothes for school, as long as it was done in a ‘uniform’ shop sounds great and I guess I should be grateful. 

Now my school was described as progressive! with a no uniform policy, all pupils allowed to wear what they wanted. In a relatively prosperous mining community with fairly high rates of employment (that was soon to change) I was surrounding by kids in Fred Perry tops, Wrangler jeans, Adidas trainers, denim jackets etc  (feel free to mix and match brands) And there was I in my black trousers, shiny black shoes and crisp white shirt. You may as well had a sign on my back saying ‘here for your amusement’ or on my spotty forehead saying ‘Punch Me’  The very small but segregated ‘free school meals’ queue was full of joy, we were fortunate to have a different colour meal voucher, just incase I forgot what queue I was supposed to join.

Put that together with my home being lit by paraffin lamps, no tv and an air of sheer misery is it no wonder I decided that I would prefer my own company. I distanced myself from all friends who would normally come to my house. This ‘power outage’ was the final ‘event’ that would lead to my parents divorce just a year or so away, but that is another story. 

My involvement with the St John Ambulance Brigade dwindled somewhat and I was soon to join the Air Training Corps, this was a bit of a lifeline with new friends who lived further away (the meetings were in Pontefract some 7 miles from home) My friend John who lived around the corner was also there and going through his own issues at the time, it was easy during that period to keep my distance a bit. We were to be on-off friends for years, incredibly close at times and the only friend I think I ever fought with, like proper punches and everything.  John never moved from Upton and sadly took his own life in his back garden a few years ago. 

My main lifeline, always looking for positive things was Radio 4. I had discovered the channel on Saturday afternoons when I had my hair cut at Terry’s place. A barbers shop on the high street in Upton. Terry was a bit of a local celebrity who had won some money on the football pools and had opened a barbers shop. He was a loud smily type person oozing with opinions! He would play radio 4 constantly and I loved listening to the plays, current affairs, interviews etc. Incidentally it was also the place that I discovered pornographic magazines! I guess you can picture the place. 

Armed with a small transistor radio and stolen batteries from the newsagent (sorry) I relaxed in my isolation.  Radio 4 together with Martin Kelner’s show on Radio Hallam and Tommy Vance on Radio 1 became my life for a few months, I was yet to discover John Peel. 

Radio 4 was like traveling, and most of my ‘real’ education came from this. I developed a wonder for what the world had to offer. I lived in a village where it was the norm to be born. live and die there, sometime without ever traveling a few miles away, ever. 

In later years when touring the shipping forecast (sailing by) would give me a warm feeling of a day well spent, a job done. And it still does. Many traveling companions have rolled their eyes, laughed, endured, and openly taken the piss out of me. But they would never understand the lovely calming effect that this music and poetic news of the seas around the uk would bring me. 

The electricity was off for 9 months, it was a lonely voyage of discovery and nothing would ever be the same again. it gave me the objective of getting away, traveling and not living a life of hand to mouth economics. It also gave me a sense of empathy and something in me that would never forget those less well off. Other influences during this time would instil a sense of community, of doing things for others, but again thats another story. 

42 days into treatment and feeling ok. still in a bit of muscle and joint pain but not enough to require pain killers. My appearance though is beginning to annoy me, and I know I really should not let it.

I am a week away from another round of blood tests and a CT scan. I am to be checked as to my  tumour risk, low medium or high. This will decide what dose of the next drug, Ventoclax I will start on. 

Some friends have stopped asking about my health, mainly I think because they were looking into alternative treatments that could work along side the treatment I am having with all the best intentions and not able to help. I understand. And of course it’s been Christmas, a busy time for all. Other people have unexpectedly reached out which is truly lovely. The way I look at the moment triggers feelings from the past, the sort that I had with events that I have mentioned in this blog. I am tending to hide myself away somewhat.

May 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…


Pontefract Squadron ATC


Thank you for the days
Those endless days, those sacred days you gave me
I’m thinking of the days
I won’t forget a single day, believe me

Ray Davis 

Approaching the final years of school there was time tabled ‘careers advice’ which generally involved meeting someone from the job-centre, already bitter with what life had given them with a list of Job’s available at the National Coal Board. They would sit and work out where you would best fit in this list of trades, probably by how much they liked you and not by your academic achievements. By and large any exam results meant absolutely nothing, you were going to leave school and mostly follow your father, uncle or older brother in the same job as they do.

My father had a disability (not just being married to my mum) but a very bad speech impediment which meant mainly that he had difficulty holding down any job for any length of time. He also had a skin disorder which caused tumours, this was set off by coal dust as discovered early in his working life. His neck was badly scarred by the removal of these. So fortunately I think, a life in the coal mines was not an option. He trained as a mechanic and by all accounts was a very good one. 

Well before the ‘careers advice’ sessions had commenced I had already worked out my escape route. For a couple of years I had been an active and enthusiastic member of the Pontefract Squadron of the Air Training Corps (Squadron 2460) A very enjoyable time of my childhood and following a number of interviews and tests I had a conditional place as an Air Radar Technician in the RAF. With this knowledge at just over 14 needing just six passes in my O’levels and easily on track for these I started to enjoy myself.

I was soon to start touring with a local band helping look after their technical requirements. They were playing mostly the club and university circuits nationally and it meant some very late nights and consequently some missed school. I was also getting involved in some school drama stuff.

The next year I passed all the exams with the exception of Mathematics (my top subject) I was at a loss to know what had happened however it was clearly obvious really. I stayed on in the lower 6th to retake and study a little more. 

A new teacher, an ex-pupil at Minsthorpe High School who had lived round the corner from me was back teaching drama (whilst incidentally writing episodes for Grange Hill – the irony!). A lot of my friends were acting in a play he was writing for the National Student Drama Festival and John Godber asked me if I would like to do the lighting for it. Anything for a laugh, and it certainly turned out to be. 

I was in a new world of creative people having fun and thoughts of going into the RAF seemed a world away. As much as I was learning and having fun though I wasn’t sure how this would get me away from this small town, but it did appear to be a slightly more tolerable place.

I got involved in everything I could and after taking a play with the Wakefield Youth Theatre to a Festival in London I had a chat with a man who was, in some way, involved with the youth theatre. I believe he worked for Wakefield Council, maybe a councillor. I am really not sure. What I do know is that following our chat about possible direction I got a letter inviting me to an interview with the council about a grant to pay for a course at Paddington College in Theatre Electrics. 

In this dim and distant past there were only two technical theatre courses in the country, both at Paddington College, one in Theatre Electrics and one in Sound Design.

Not only had this amazing man got me this interview but he had helped apply for the course on my behalf! He was also present at the interview and gave me a character reference. 

I not only got offered the place at College but the fees were paid for and I got a small maintenance grant to help me re-locate and get started. 

I was on my way to live in ‘that there’ London, the first of many great adventures. 

I am a huge fan of Radio 4’s Saturday Live and I think of this guy every time I hear the ‘people say thank you’ section. You see I simply never said thank you to him. Many people have selflessly helped me in my life but no-one had the impact in changing my life for the better with an act of kindness than this man. I am and will be eternally grateful. 

34 days into treatment and the inflammation response I have been experiencing is beginning to wear off. My diet almost totally consists of anti-inflammatory foods. I have less pain in my joints but the spots are still very obvious. Ive taken to wearing a hat which reduces those second glances from strangers. I’m pleased to be over the Norovirus that laid me so very low last week, that was very grim to say the least. My drink of choice is a cup of hot water with a couple of slices of fresh ginger, a slice of lemon and a spoonful of honey. I am resting a lot but have also been out seeing people a bit more this week. I hope to include some exercise into my routine next week even if only some gentle stretching. 

See you soon, take care, be kind…


Is a dream a lie if it don’t come true
Or is it something worse

The River – Bruce Springsteen

This decade commenced with another change in direction, in that I was made redundant from a post I had very much enjoyed for 8 years.

With an acceptable redundancy package and a huge blow to my moral I decided to take a bit of time off to consider what it was that I wanted to do.

After a six-month time of reflection volunteering in a homeless support centre in Stoke-on-trent I decided that I would give self employment a go. 

The redundancy experience did put my confidence and self worth at a very low point, however the experience of supporting the people I met at the centre showed me that yet again I had so much to be grateful for

I also became very good at table-football and simply brilliant at throwing together full English Breakfasts for up to 30 people. However thats a story for another day. 

I decided that I would never again work for a corporate body owned and run by accountants  but get by enjoying what I do, I was 36 six years of age and heading for a new beginning. 

An exciting time maybe?

And it has been an incredible rollercoaster type journey but again these stories will wait. What has been crossing my mind lately, and the first thing I thought of when diagnosed with Chronic Lymphatic Leuakemia was, ‘what if I cannot work?’ in turn this makes me ponder what your thoughts would be in the same situation.

It is not just about giving up the thing I love but about not being able to support my loved ones my friends or even myself. Going off sick is not an option, it doesn’t exist for us self-employed small business owners.

From the moment that some amazing person in a laboratory looked at my blood sample and recognised that something wasn’t right, alerted my doctor just a very short time after receiving this sample and in turn my doctor called me I have been given the most incredible support possible.

Incidentally because I have a large network of friends in very eclectic circles I actually know who the person was that diagnosed me.  Not personally but via a mutual friend, needless to say I am so very grateful.

As a chronically ill person though I began to think about what would my situation be without the National Health Service.

One way to look at this would be to look at what life was like for the average person before the National Health Service existed. 

I am a bit of a history buff and extensively studied 20th Century European history so I have a good understanding. 

‘On the 5th July 1948 an historic moment occurred in British history, a culmination of a bold and pioneering plan to make healthcare no longer exclusive to those who could afford it but to make it accessible to everyone’

I certainly would not one of the wealthy people who can afford the care and treatment that I am grateful to be having. No really! I know what my treatment is costing.

Because I am a curious type I have asked, and I was shocked at the cost of the drugs alone.

However it is still hard to imagine what this would mean for me other than to shuffle off this mortal coil well before I would like to.

To understand more of how a nation without the NHS would affect me day by day I looked at another country, a civilised western power that many in this country in turbulent political times look to as a number one partner, creating an even closer ‘special relationship’. 

‘Medical bills are reported to be the number one cause of U.S. bankruptcies. One study has claimed that 62% of bankruptcies were caused by medical issues. Another claims that over 2 million people are adversely affected by their medical expenses’ 

I have carried out a lot of research including talking to friends who live in the USA and the future of following that country as an example is not a good one. There are so many better forms of government and society examples that we could emulate. 

I believe that most Americans are amazing people, I have seen and heard of some incredible stories how how they help each other for example. I have been fortunate enough to spend some time working there with the opportunity to talk to everyday people in a number of states. 

It is, in my humble opinion, just that the very nature of their constitution they are trapped by corporate powers, the ability for money to influence and control everything.

We have seen that influence right here in the UK in the past few years. The power to persuade the turkeys that it would be a great thing for them to vote for sharper axes leading up to Christmas.  

I guess It’s a liberating feeling ‘wanting their farm back’ with no idea about how detrimental this will be for them without the other farms to come to they’re assistance.

Tomorrow is a General Election and I can only hope that people will vote with love and compassion and not hatred in their hearts and minds.

Day 22 of treatment and I have to be honest that the last week has been pretty tough with muscle and joint pains supported by their miserable allies diarrhea and sickness, leading to a couple of days at Ward 202 being thoroughly checked out. 

I could not have got through this fairly busy work period with the incredible support of family, friends and understanding clients. again something to be incredible grateful for. 

See you soon, take care, be kind…

The forest was shrinking but the trees kept voting for the axe as its handle was made of wood and they thought it was one of them.
Turkish Proverb.

‘of course mammas going to help build a wall’ 

Roger Waters – Mother – The Wall.

I’m not sure what it is that awakens me at 3am but I will not be able to fall back asleep for some time.

For some reason my thoughts goes back to early memories, and one in particular.

I am 5 years old, in the kitchen (most families in Yorkshire council houses on mining estates lived in the kitchen, the ‘front room’ or parlour being for special occasions the only source of heating being the coal fire in each room)

‘Mam’ see’s the man walking down the side of the house,

 “quick she says tell him i’m out” she whispers as she darts behind the sofa.

The door is open and the man is in the house looking at me

“Mam’s out” I repeat the words I just heard. 

“then who is that hiding behind the…’ he starts to say, 

then he probably notices the ‘caught in the car headlights’ look on my face,

“never mind” he says “tell her I will be back next week”

The man was from The Provident, legalised loan sharks who stalk people in deprived, struggling areas. Incidentally they now do it online.

I did’t understand any of what had just happened, I was in total shock not able to make sense of it all. 

I did know that I had just been asked to lie to a grown-up. A bare faced lie that made me feel so very ashamed. 

The overriding feeling and lesson learnt was that those who should be nurturing, inspiring and loving you are capable of putting you in the worst positions you could imagine, I guess I felt confused and betrayed, I simply could not make sense of it. 

Looking at this years later I could see Mum chose to take the easy route, a cowardly route, and put her son in this position to protect her own embarrassment. Not considering the effect this would have. I would in the following few years become knowledgeable about manic depression and schizophrenia observing this at first hand. 

There is no manual for bringing up children and many of us could do it so much better (as a foster carer I see this daily) especially people already struggling with other issues such as poverty (austerity) and health issues. That is why the amazing ’Sure Start’ scheme initiated by the last labour government could have been the greatest social leap forward for our country since the NHS, sadly its worth wasn’t seen by the succeeding government. But let’s not get political, maybe I will reserve that for my next blog. 

This is not about me, I spent a lot of time particularly in my 30’s considering these childhood events and putting coping strategi in place so that they didn’t define me, I did not blame my mum at all, I came to realise it was her illness that took it’s toll on all of us.  

This is more about my mother, who as a child would have had dreams and aspirations and slowly one thing after another would lead to a downward spiral.

In her later years on medication she was a much more content person it would appear and she was a much loved grandmother.

I hadn’t lived with my mum since my parents divorce at the age of 14 but did visit regularly at first, the visits decreased as I moved away for work and my visits to Yorkshire became infrequent.  

I do clearly remember a visit in my late teens when she greeted me with the phrase “you know our Peter, every timer I go out a I have an overwhelming sense of impending doom” she definitely had a way with words.

Mum passed away in 2002 aged 65, living with breast cancer but defeated by bronchial pneumonia, I often think she was possibly reaching for another cigarette.  

I was in New York and didn’t hear the news for four days. I returned for her funeral. Landing back at Heathrow I called into Warwick on the way up to Yorkshire to install a set for a clients rehearsal period.

The last time I hugged my mum I was five years old.

Day 13 of treatment and with my face and neck covered in spots and my right shoulder aches like crazy, my hips however are feeling much better and generally I feel pretty good. I’ve not forgotten to take any tablets yet, a minor miracle, and the spreadsheet I have made to keep track is looking like a work of art.

First set off bloods following the start of treatment today and I feel sure there will be much less alcohol in these samples. 

See you soon, take care, be kind…

I am not defined by my scars but by the incredible ability to healLemn Sissay