I started writing this when I was on a flight from Edinburgh to Amsterdam Schipol back in the later part of March. I was going to Holland with some mates for the 2017 Marillion Weekend at Port Zealand. So the intention was to write when I was on the flight going to Holland, then write on the return flight. Oh dear dear dear, that didn’t go to plan for various reasons! However, I did manage to write, a wee bit.

So a wee while ago, someone suggested that I should write about chronic pain, how it feels, how it effects me and my family and how we live (so what Marillion fan is going to come back with something about this? lol).

But I’m not just going to write about how chronic pain effects me, no no, I’m going to write about it starting and then discovering what the cause of it was.

This journey started around about 11 years ago. I was employed by the public service trade union UNISON. I was an Information Development Officer and at the time I was based in Glasgow.

As my life with severe chronic pain started around 11 years ago, so much has happened over that period. This subject matter will be over a few postings on Facebook and my Blog (when I finally start it).

I hope that you find this of some interest to you and please do not hesitate to contact me if you have any questions etc.


Several weeks ago, I met with a good friend. We hadn’t seen each other for a good amount of time due to a number of reasons, primarily our separate cancer journeys.  

I really enjoyed our chat and catching up over a “braw” coffee.Even through our cancer(s) have been in different parts of our bodies, what we did have in common was that we were left with severe chronic pain. Remember the word, severe.

My own journey with chronic pain started away back in 2006. For 11 years, chronic pain has robbed me from doing the things that I used to love doing, things like: spending quality time with Kirsty and Nathan; unable to play with Nathan for long periods of time; spend quality time with Jack and Ben when they come to see us; and so many things as a family. 

Then other things in my life like; going to see my beloved Celtic, going to see my favourite band Marillon, and so so many things that we take for granted. And it also made me realise that I was no longer able to hold down my position with UNISON as an Area Organiser based in Edinburgh in late 2015.

The first time I experienced chronic pain was in MARCH 2006. Kirsty was out for a walk with her parents and I went out on my road bike for a training ride as I was doing a charity cycle ride from Lands End to John o Groats. I met up with Kirsty and her parents at The Elgin Hotel in the beautiful village of Charleston Fife. I met them there as we were looking for suitable wedding venues at the time.

Anyway back on the bike and time to cycle back home to Inverkeithing for a shower then down to Gallagher’s for a Celtic away game. I can remember cycling along the ‘Tank Road’ from Rosyth to Inverkeithing. I was really pleased as my wee computer was showing me cycling along that road at around 25 miles per hour. Not bad I thought as this had only been my third or fourth training ride that year. Then I got to the hill at Castleland Hill Road. I was going really well, then suddenly I came across the most strangest pain that I have ever experienced. I kept cycling for a wee while then, I finally had to get off the bike, I was so bloody loathed to do so as well. 

I remember the pain so well even though it was over 11 years ago! The pain started from my right rib cage then, suddenly it went shooting up to my right shoulder. The pain was also going through my back and it so ‘hot’ and ‘sharp’ I thought that I was going to pass out!

After about 5 minutes I got back on the bike while still trying to deal with this pain. A cycle ride up a hill that really should have been no more than 5 minutes, took me more than 20 minutes.

The moment I got home I was still in agony and the sweat was pouring from me. Once I put the bike away it was time to get the now sweaty lycra cycling gear off and hit the shower. Before going for the shower I took 2 paracetamol then I must have been in that shower for around 40 minutes. I can recall a good 20 minutes of that just sitting down on the floor of the bath and the water from the shower was battering against my right shoulder as I felt as if it was on fire.

I can remember getting out of the shower and then lying on my bed for a good 10 minutes before I even considered drying myself. Still in pain, I took more paracetamol ( tut tut ) then got dressed in time for Kirsty coming home for her to get ready to join me and my old mate wee Andy at the pub. For a Sunday lunch time in March in Inverkeithing, it really was a beautiful day.

The pain finally stopped as we were walking to the pub. What a result! The pain must have lasted a good one and a half hours. The pain itself really was horrible, how I didn’t end up in a hospital that day, then I just guess that I’ll never know.

If I was to use the famous ‘1 to 10 pain scale’, with 10 being a 999 telephone call and a blue light job, then this a good 8.5 – 9! The pain though really was strange as every now and then while dealing with a pain flare up I would get what you can only class as ‘shooting pain’ traveling from the right rib cage all the way up to my front right shoulder then all the way through my back. These wouldn’t last that long these ‘shooting types of pain’, but believe me it was really horrible. I now know what caused this type of pain, but I don’t want to spoil the story at this stage.

Anyway, back to that Sunday, Celtic won, there was a fiddler in the pub and he was amazing and the Stella Artois and Magners went down fine. It was a good Sunday afternoon.

The following week I was cycling a different route. My intention was to cycle from Inverkeithing to Kinross then around Loch Leven. I must have been about 10 minutes into my cycle ride and boom, in agony. I was climbing the ‘Dales Road’ and it must have taken me around 15 minutes compared to 5 minutes. It was the exact same pain as the week before, I can remember taking Ibuprofen with me and Paracetamol, so while still cycling I took some paracetamol. By the time I reached Crossgates (4 miles from my house) I felt really ‘braw’. After this pain flare up, I managed to get a good 40 odd miles in my legs that day.

This type of pain and the times that I would get it were completely different on every occasion. I would get the pain sometimes, by doing general simple day to day tasks. Housework; gardening; cooking; baking; watching tv; public transport; holidays, being at work, going in and out of a shower etc etc….the very simple things that we take for granted on a daily basis.

Enough was enough of trying to be ‘the big man’ and put up with the pain, I finally made an appointment with my GP. I can remember somethings at that appointment, the stuff like trying to describe the pain and where it was, being checked over and then given a prescription. To this day I still cant remember what the prescription was, what to take, when to take it, the basics when being prescribed by a GP.

That very first appointment with my local GP, then all the subsequent health appointments, was what would be the start of my journey trying to find out what exactly was wrong and causing me so much pain. 

This type of pain and pain flare up’s, went on for months on end. The months turned into years and then, a good 3 and a half years later, I was finally diagnosed with a para-spinal tumour. It’s a day that I will never forget, Friday 5th November 2010.

Published by One of Fifteen

I am 1 of only 15 people worldwide diagnosed with maligant myopericytoma. Life threatening surgery in October 2015 at the Royal Infirmary Edinburgh saved my life. I am now trying to find the #14others diagnosed with this rare form of cancer. Please help me.

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