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