Time for a coffee

Time for a coffee on Ward 4, and it’s a really good one. So this is the view I have from my bed when drinking my coffee and trying to chill out.

Once again all the staff here have been excellent, which really helps when your ill and looking for answers.

Today has been a good day, but it got better when Kirsty and wee Nathan came across to see me.

Thank you to everyone that has been across to see me and thank you for all the best wishes messages etc. 

If you haven’t received a thank you message from me, then please accept my apology for not doing so. My intention is to reply to everyone, but remember I’m ill and it will be at a time when I feel better to do so.

Best wishes, Kev x

Today’s visitors in Ward 4 at the Western General Hospital Edinburgh 

My oldest son @JackONeil90 & his girlfriend Heather came to see me in the Ward. It was really great to see the both of them.

Jack stayed a few days with me, Kirsty and wee Nathan before I was admitted in here, again.I didn’t really get the chance to say cheerio on Sunday to him as I was rushed here to the Western General Hospital thanks to Anne Marie.

So back to visitors. I share a room with a nice man called David and the @Heartsfc_ player Jamie Walker was in visiting him.

I had a chat with Jamie and his wife Courtney. Thanks to Courtney taking the photograph. They are a really nice couple.

Yesterday was a great day with visitors

The post below was posted on my One of Fifteen Facebook page yesterday. I hope that you enjoy reading this.

Visitors, coffee, coffee and coffee

It was great to see my big sister Theresa and my niece Anne Marie last night. We had a right good catch up and blether.

When they left I ended up watching the Edinburgh Festival Fireworks at Edinburgh Castle from the window at the end of the ward I am on. Fireworks displays do nothing for me, but I had a cracking view and they did look pretty special.

During lunch time Gillian Barclay my pal from our: Action for Prestonhill Campaign came to see me. It was great to catch up with Gillian and I hope that the public meeting tonight at Inverkeithing High School is a success. I’m gutted that I’m in here and unable to attend.

Then not long after Gillian had left, Kirsty, wee Nathan and Stuart came to see me. It was great to see them as I have really missed Kirsty and Nathan. Yes I have missed seeing Stuart as well!

It really has been great getting visitors but I’m feeling really tired though. I’ve just had my dinner, although Lothian NHS call it supper. Regardless what it’s called, dinner time, tea time or supper it’s the best ‘stovies’ I’ve had for a while.

It’s really hot in my room on the Ward, and my room mate David was just saying to me how hot it is as well. Even with a fan on in here, it’s roastie toastie.

It’s time to chill out and watch my favourite news show, Sky News with Kay Burly. 

Thank you so much to every single person that has been in touch to express best wishes etc, it really is appreciated.

Yee ha Nashville: Live in Concert

Going out tonight? What does a day/night out look like for me. 

What does that look like for a person suffering from chronic pain and his or her partner ?

Choose Life, choose this choose that. Ewan McGregor carries this off well in both of the Trainspotting movies. From the moment you wake up in the morning, that’s if you mange to sleep, to that moment when you shut your eyes at night and drift off back to the land of nod.

 We choose when we wash, what we are going to wear, what we are going to eat, choose what the kids are going to wear to school, choose where and when you walk the dug. We all have these choices and choosing what we are going to do all the time.

So for a few months now, me and Kirsty choose to go to see: Nashville Live in Concert. This was a few weeks ago now at the SECC Hydro in Glasgow. So due to my disabilities and general health, we have to carefully choose: where will we sit in the venue; where will we stay – this itself can throw up a range of problems for me with all the usual stuff thrown in: budget, closeness to venue, is there lifts in the hotel, does the room have a safe for my medications etc etc. In the past a lot of things wouldn’t bother me when going for a night out, weekend, holiday etc.

Then just before I leave a hotel room, or when back home before going out I have to work out how long does the gig last for and what medications I have to take with me. These medications are usually my ‘core medications’, the ones that are for pain relief throughout the day. I take these at specific times throughout the day. Then just in case I take a ‘pain flare up’ when I am out I make sure to take my ‘breakthrough meds’ with me.So after that, it’s out for a rare night out due to how I am and hopefully it goes without any flare ups. 

Back to the night of the ‘Nashville gig’. One of my core medications and main one for breakthrough pain is methadone. So this usually comes in a 150mg bottle, along with a syringe to measure what I have to take. So when we were going through security at the Hydro and when I had the body check by a security guard, we had a laugh when he came across it as he genuinely thought that I had a cough bottle with me. This was in my jacket pocket and he really wasn’t interested in me showing him what it was. I was shocked at first, as more often than not I have to give an explanation to security staff but thought no more of it! 

I would hardly say that I’m a big fan of country music, but I enjoyed the music in the Nashville series and I really enjoyed this gig. Thinking back to the gig at the time of writing this, I had my core meds with me and my methadone for breakthrough. I experienced a flare up midway through the second set, Not to miss any of the gig instead of going to a toilet to take my methadone I sat at my seat and had it. This it’s self threw up a range of issues for me, the main one is the lightning in the arena, it was pretty tricky measuring the correct amount but I managed. Then there’s the mind wondering what people sitting next to me will think, but to hell with that when I was in so much pain.

Kirsty and I really enjoyed the gig and instead of staying out a wee while later for a drink as Nathan was staying with his gran parents, we had to go back to the hotel. This was due to tiredness and ‘normal ongoing pain’. After a decent nights sleep it’s then back to the normal routine day to day stuff we all do; get washed get dressed go for breakfast, then go about our day. As we were staying away from home, it was making sure I had enough meds with me in case of all eventualities chronic pain sufferers put up with every day.

We enjoyed this gig and rare night out, but it did take it out of me.I started writing this article when we got home from Glasgow, but it just sat doing nothing for several weeks now in my documents folder before finishing it. I wrote about this night out as I wanted to give people an idea of what a night out is like for me and Kirsty.

We were on holiday last week in Turkey, so can you imagine what it must be like to make sure that I have enough meds on me!

Please feel free to comment on this.

LIFE WITH SEVERE CHRONIC PAIN – PART 1 DISCOVERY

LIFE WITH SEVERE CHRONIC PAIN – PART 1 

DISCOVERY – MISDIAGNOSED FOR 3.5 YEARS THEN A TUMOUR IS FOUND 

INTRODUCTION

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.

LIFE WITH SEVERE CHRONIC PAIN – PART 1. DISCOVERY

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.

One of Fifteen

So why is the Blog called One of Fifteen? Well that’s a long answer, a very long one,in fact it’s that long it goes back to March 1996 and this Blog will hopefully explore the reason(s) why I am writing about my health.

Life threatening surgery on 7th October 2015 at the Royal Infirmary Edinburgh saved my life. The surgery was too remove a massive tumour from the wall of my chest.

A month later, I received the phone call from my  consultant oncologist that completely changed my life as it was to discuss the findings and results from the several pathologists that examined the tumour. The story of the tumour being passed around the UK and then to the USA to be diagnosed, is for another time.

I was told that it was a rare tumour called a malignant myopericytoma. I then was told that the tumour weighed 10lbs and the size of this was 25 centimetres in circumference. Then after all that, I was then told that I am only 1 of 15 people worldwide with this rare form of cancer.

Thank you for following my Blog and my social media sites. It’s with your help and support that will hopefully help me find the #14others worldwide with this rare cancer.

One of Fifteen – an introduction 

Hi, my name is Kevin O’Neil, I am 50 years old now and I live in a small town Inverkeithing, Fife, Scotland. This is home for me and my wife Kirsty and our 6 years old son Nathan.

I never thought that I would ever write a Blog, after all what would I write about? But as fate would have it, I’ve found something to finally write about; cancer’. But this Blog is also about severe chronic pain and living with it for the last 11 years, plus…

Now, I am 1 of only 15 people worldwide diagnosed with the rare form of cancer called malignant myopericytoma (#malignantmyopericytoma). The tumour originally started on the wall of my chest on the right hand side.


These photos were taken in late September 2015, roughly about a week before life threatening/saving & changing surgery.

Carrying that about was exhausting stuff, but with surgery round the corner, I knew that I wouldn’t be exhausted again, like that. Wrong!

You see I’m exhausted most days now. This is due to the amount of medications I need to take every day, for the rest of my life. Also down to severe chronic pain making me extremely exhausted.

So in this Blog I will be writing about these areas.

Thank you so much for liking and following this Blog . I will be making regular updates so please keep checking in too see what I have to say. But I also want to hear what you have to say, wherever you are on our beautiful planet. Don’t be shy, I don’t bite. Lol

Finally, please ask your family, friends, workmates and anyone else you can think of to like and follow the page.

Hopefully this can help me track down the #14others that have/had this rare type form of #cancer #malignantmyopericytoma

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