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One of Fifteen – an introduction 

Hi, my name is Kevin O’Neil, I am 48 years old now and I live in the small town Inverkeithing Fife Scotland. This is home for me and my wife Kirsty and our 4 years old son ‘wee 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

KIRSTY AND TEAM AT THE 2018 EDINBURGH KILTWALK FOR MAGGIES CENTRES

My wife Kirsty, along with a team are taking part in the Edinburgh Kiltwalk. They are walking 26miles in 9 weeks time to raise funds and awareness for the amazing charity for cancer patients and their families etc, Maggies Centres.

I have personally used some of Maggies services when I have been a patient at the Western General Hospital Edinburgh and when I was admitted to the Victoria Hospital Edinburgh. The moment you walk into one of the Maggies Centres, you are walking in to a friendly and caring environment.

Please sponsor Kirsty, or if you want to join the team then just get in touch with either Kirsty or myself.

Thank you for reading this and click the link below for more information.

Best wishes

Kevin O’Neil x

https://edinburghkiltwalk2018.everydayhero.com/uk/kirsty-1

LIFE IN SEVERE CHRONIC PAIN – PART 3: IT ALL BEGAN WITH THE BRIGHT LIGHT

It all began with the bright light

The bright light and the noise

The chaos of the sense and the scream of desire

The intro of track 2; IT ALL BEGAN WITH THE BRIGHT LIGHT from the album Brave by Marillion

THE NIGHT I MET MY FAVOURITE ALL TIME SINGER

It was December 2012, I was going with my mate Robin to see Steve Hogarth, Marillion’s singer, perform at Oran Mhor in Glasgow. Even though myself and Robin have seen Marillion that many times, this was the first that we had been to see Steve Hogarth perform his ‘legendary’ solo shows.

What an excellent gig and at the end of the show you got the chance to meet the man. I stood in the queue with Robin, right behind us was a couple of fellow Marillio pals, Andy and Pammie. We were having a good chat and a good laugh and Pammie had asked me how I was keeping , etc. So as I was explaining to her about the first operation I had, I was telling her about me witnessing the flashing white light experience. Pammie said, you should tell Steve about that.

It was our turn next to have a chat with Steve and get our photo’s taken with the man. Then Steve had said to me, “What was that they were saying about the bright flashing white light?”. Then just before I told him, he turned round and said, “I wrote a song about that”. I couldn’t help but say for a laugh, “Aye? Was it any good?” We all had a laugh and I had told him the story. We then had our photos taken together. It’s the first time I had ever met Steve since he became the singer of the band in 1989, and what a good guy he turned out to be. It really was a braw way to finish off a braw night.

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After all the years being a Marillion fan, I finally managed to met Steve Hogarth.

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I was asking Steve to sign a copy of one of his solo DVD’s. His son Niall (I bloody hope I got the name right) was on his merchandise stall that night and what a really nice guy. Just like the auld man then.

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I asked the ‘legendary’ Graeme to join us. Graeme is a cheeky chap and is as almost as famous as Steve! It’s all in fun Graeme.

So the moment I experienced the bright light arrived.

IT ALL BEGAN WITH THE BRIGHT LIGHT

It was Monday 24th January 2011 and I had been awake since 06:00. After having showered and shaved, I doubled checked the bag I was taking into the hospital and that I also packed the medications I was on.

I had to be at Pre-theatre Admissions on Ward 33 (DCN BUILDING) WESTERN GENERAL HOSPITAL EDINBURGH by 07:45. Kirsty had taken the day off her work to come over with me. My brother in law Patrick was picking us up to take us over just before 07:00 as the traffic on the Forth Road Bridge at the time was just hellish. Thank goodness for the new Queensferry Crossing, what a difference it’s making.

We got to the Pre-Admin room for just after 07:30. I had a brief conversation with the nurse that was taking me down to the operating theatre and I was given a theatre gown to dress into. Once I was changed into the theatre gown, an anaesthetist had come to see me. He explained to me that there would be three anaesthetist’s working on me as there will be three separate surgeons working on me, including a thoracic surgeon, Fiona Kernahan, from the Royal Infirmary Edinburgh (RIE).

It was also explained to me that the procedure that was being carried on me was called a Thoracotomy and he was going to explain what it was, before moving on to tell us, I stopped him by saying, “It’s ok doctor, we were fully briefed about it the other day”. He turned around laughed and said, “And you still turned up!” We got on well and I’m glad that he had a great sense of humour as it calmed me down.

Just then, two porters arrived to take me to the operating theatre for my surgery. As I was still talking and getting ready the porters had a seat in the waiting area and what a laugh we had. So basically for me to get ‘ready’ for surgery, I had to undress, put on a pair of ‘theatre socks’, more like tights and wear a theatre gown. I had to get Kirsty to help me with the gown. We then threw everything I was wearing into a plastic bag for Kirsty to take home with her.

Finally ready to go to theatre and it was time to ‘get on the bed’. It’s a good job that the lifts are a good size there, as it managed me, the porters, Kirsty, my brother in law Patrick, a nurse and a junior doctor. Once on the ground floor it was time to say good bye to both Kirsty and Patrick. I gave Kirsty my mobile phone for safe keeping, said bye to Patrick, gave Kirsty a kiss and I couldn’t help but say too her, “See you on the other side” we both laughed, slightly nervously,  and then it was time for me to go into theatre.

This is it, I thought to myself, along with that many different kinds of thoughts. Once in the room before the actual operating theatre, I couldn’t get over how many medical professionals in the room.

I finally got to meet Fiona Kernahan, a thoracic surgeon from the RIE and she asked me a range of questions about how I was feeling, how was I feeling about having surgery, was I aware of the procedure being used on me , etc.

I can always remember this room being really busy. I asked a staff member if there is always this much staff about for surgery. The answer was a simple “no” and when I asked why there so many medical staff there, the answer was simply, “all these people here are here to assist with your surgery”. 

One of the doctors was then telling me about the reason why so many staff were in the room. He explained that three surgeons would be operating on me, so 3 registrars were there to assist the surgeons and 3 anaesthetist’s are also needed.

I was also told that there was a few students training to be surgeons watching the whole procedure and some were actually basing their thesis on me. He was a good guy this doctor and very informative, but as he was getting to the point of the operation, he was rudely interrupted by a nurse. I really couldn’t believe what I was seeing. 

The nurse interrupted the doctor all because she didn’t have my date of birth for the wrist band and the band around my left ankle. I couldn’t believe it, so I turned around to her and said, “Do you mind, I am trying to hear what the doctor is saying,” I can remember one of her colleagues then handing her a file with my details on.

Then after that, it was explained to me that I would be getting the anaesthetist’s to put me to sleep and that I was to count from 10 to 1. After I was told all that, I was then taken through to the actual operating theatre. 

The first thing I remembered was how many people was in the operating theatre, and I said that to a nurse. Then my consultant came to speak to me to see how I was feeling (eh pretty nervous) and to assure me that everything would be ok.

Then it was back to the anaesthetist’s I spoke to earlier and this was it, time to finally be knocked out and put under the knife (my words). It hit me then that everything was now out of my hands and I would rely on the people in this room to carry out a high risk procedure on me.

“Mr O’Neil, you will feel like it’s a little prick on the skin when we first put the needle through your skin, then I will get you to count from 10 back to 1”. “is that sound ok Mr O’Neil,” “yeah fine by me”.

Then I heard him say, “Right, quiet everyone, this is it”. “ok Mr O’Neil if you can count from 10 to 1 now”. Before I started counting, I said, “Please call me Kevin, to me Mr O’Neil is my dad”. I was so nervous I just had to say something before that count. Then the next thing I knew I got the sign to count.

“ 10, 9, 8, 7,……….”

Before I was told that I had to have surgery, I always wondered what it would be like going through surgery. The night before all this was happening and when I was trying to sleep, I kept thinking about my late mum and how brave she was when she was going through all her health problems what she had for many years.

My mum also had gone ‘under the knife` several times in her life and I remembered how horrible it was when we were waiting to hear the outcome of the operation(s). I had wondered the night before what this would be like for Kirsty,my sons, my dad, my sister Theresa and her husband Patrick and many more family members. After all, I would have no idea what the wait would be like Kirsty, the way I looked at it, was I was a big piece of ‘raw meat’ getting ready to be cut up! (I did work in a butcher’s shop when I was at school and I was a butcher’s apprentice for over a year!)

The bright light and the noise

The chaos of the sense and the scream of desire

After the count down, I remember hearing;

“Kevin”…….”Kevin”……..”Kevin“. I thought to myself, “Who the fuck is whispering my name?”

Kevin”…….”Kevin”…….” Kevin”. This time my name was getting said louder and louder now. Then suddenly, I was standing in a ‘bright white room’ and in the distance was a shadowy white figure with an arm waving‘.  It was like this figure was waving as to go over to it and join it. I was really confused and wondering, what the hell was going on? But the room I was standing in was so beautiful and peaceful.

I can remember ‘the shadow figure was looking at peace with itself and waving ‘its’ arm periodically for me to join it. I can remember thinking to myself that this room was ‘amazing,’ but who was waving over to me?

“Kevin”……”Kevin”……”Kevin”. Once again my name was getting louder and louder. The shadowy white figure was now waving even more and it was getting closer, closer, closer, with its arm making a gesture for me to go over and join it”. I must admit, I was tempted to join it. However I heard;

“Kevin”…….”Kevin”…….”Kevin”. Again this was getting louder and louder.

Just right after that hearing that, I suddenly I could hear “ Kevin, please slowly take a few deep breaths and then  slowly open your eyes, now if you can give me a big deep breath then a big cough”. So I slowly opened my eyes, took a big breath then a cough. 

You know when your asked by your GP, consultant, nurse, etc,you have to force yourself to do it and cough, even as I write this article right now, I will always remember how sore it was that simple cough. I mentioned this and the doctor said, “Kevin you have just had major surgery and you have trauma to the body and it will be like this for a while. You will always know that you have had major work carried out on you”. The cough helped me to loosen away the ventilator in my throat and mouth. The taste then in my throat and mouth was horrible.

I was then helped to sit up in the bed and I was asked some questions like, “Do you know where you are Kevin?” “Yeah, some hospital in Edinburgh,” “which one Kevin,” “no idea” I said. Then one of nurses asked me for my date of birth, then asked me how I was feeling and then would I like some tea and coffee. My reply, in a soft voice, “Could I have a coffee instead please?” The reply was, “Off course you can and what do you take in it?” “Two sugars and milk please?

Before the coffee came, one nurse got a small basin and she gave my face a quick freshen up with a flannel. We had a brief chat and I can remember saying to her about the amount of ‘tubes’ in my body. I didn’t have long to wait for my coffee, and at the time that was the best coffee I had ever tasted.

The coffee was brought to me in a plastic beaker with a lid and a straw, and the nursing staff were helping by holding it for me so I could have a drink. I only managed to eat one slice of toast but I managed the coffee. It must have been about 10 minutes that passed and the next thing I knew, I spewed it back. The nurse watching me was right in there cleaning me up.

I kept thinking when I was in recovery that I was forgetting about something, then it dawned on me “has anyone called Kirsty?” The staff told me that they had called her when I was out of surgery and she would see me later.    

It must have been around 18:30 and the time had arrived to be transferred to the High Dependency Unit (HDU) on Ward 33. I can remember the team explaining everything I was wired into at the time, including that all too important hand pump. The hand pump was for me to press on an average of once every five minutes and morphine would give me instant pain relief. Well that’s the theory anyway!

The ward sister came down to the recovery room along with a member of the ward’s nursing staff. Its funny the things you can remember.

When I was coming out of theatre, and when I was being pushed in the bed to the lift, I remember one of the porters saying to a man getting into a lift, “Excuse me sir, but we need the lift to take this important man to High Dependency”. The man agreed, but his man’s face was a picture, so I turned round and said, “That really is good of you,” he turned and said to me, “well it looks like you need it more than me”. I couldn’t help myself, so I said to him, “Do you reckon? Why do you make that out then?” He wasn’t so smart and so smug after that comment.

We finally got to HDU and I was then getting settled into the ‘bay’ my bed was going into, I had a sense of déjà vu, it then dawned on me, my mum was in this ‘bay’ after her brain tumour operation a good number of years ago.

I wasn’t that long settled in when Kirsty, my sister Theresa and my brother-in-law Patrick came to visit me. They all came bearing gifts as well; sweets; chocolate, juices, magazines and Patrick stopped at MacDonald’s on Telford Road for a cheese burger for me.

I had asked Patrick to get me it just prior to me going into surgery. I remember it tasted great and it went down well, but it came back up even quicker!

The next thing I knew, Kirsty pushed the button for the nurse to come to us and Theresa and Patrick jumped straight into action and helped get me cleaned up. They got me cleaned up really quickly and I settled back down. I must have drunk some amount off water right after that.

I couldn’t get over warm it was in HDU. I was constantly having sweat wiped from me. I was also feeling really tired, but it was explained to me that I will be like that for a few days due to the amount of different drugs in me due to surgery and now pain management.

As time was getting on it was time for my visitors to leave. It was great seeing them, but I was at the stage that I needed to sleep. Over the years and all the different operations I have had, Kirsty notices very quickly when I am tired and then need to rest.

It was now time to settle down and go to sleep. Sleep, it was more like a rest!

OOT AND ABOOT

“HI KEVIN, HOW ARE YOU TODAY?’

We are all mostly decent people. When I take wee Nathan every morning to his nursery, Treetops Family Nurture Centre in Inverkeithing, we both tend to say “good morning” to people passing us. A high percentage will say good morning etc while others put the head down and totally blank you!.

Myself and Kirsty encourage Nathan to be polite, and say “Hello”, “Good morning”, “Good night”. When he is it his Hillfield Swift’s football training sessions we get him to do the same. After all, as the saying goes “good manners cost nothing”. We all want whats best for our children and we all have a feeling of pride when we see them being polite and helping others.

When I’m oot and aboot, and when I bump into someone I know, old friends, former workmates, neighbours, sales assistants in shops etc, after I’ve said hello, good morning, good afternoon etc, I am usually met with; 

  • “oh hello Kev (or sometimes Kevin), how are you today” 
  • “how are you?”
  • “how are you keeping?” 
  • “how’s thing’s (or how’s tricks?)
  • “what’s been happening Kev?”  

It’s people being nice and polite. I really do appreciate that I am being asked these questions as it could often give me a wee ‘lift’

I tend to answer these type of questions with; 

  • “aye, I’m not bad, thanks for asking”
  • I’m ok thanks”
  • “ach I’m so so today; you know what its like, same shite different day”
  • “same old same old”
  • I’m actually feeling really good today and really upbeat ( rare these days)”

or simply:  

  • I’m fine, thanks for asking though”. 

When I am being asked these type of questions I am usually dealing with chronic pain and a lot of people don’t know this as I tend to hide it really well. But I’m actually saying a little ‘white lie’ to people when I’m being asked these.

I often reply with;

“ I’m so so” or;

“ I have my good days and I have my bad. I’m feeling either good or bad today” 

I really don’t mind being asked about my health, but I often tell a ‘little white lie’ when I’m answering this particular question though. Living with severe chronic pain 24/7, some day’s are better than others, then there’s the days that I have my ‘pain flare up’s’ or ‘take a turn’.

When I am having a ‘good day’, I look really good and look as if there is nothing wrong with me (only those that are close to me can see that I’m actually unwell). On these days I am usually about 6 out of 10 in the pain scale.

A couple of weeks ago, I bumped into a family friend here in Inverkeithing High Street. I had Nathan with me and this was a woman I have known for years. We had a good chat as we were talking about our family’s and what general daily life throws at us.

Then she asked me; “ so Kevin, how are you keeping these days?” I started off by answering with “I’m ok thanks”. Then suddenly I found myself saying to her; “I’m sorry, but who the fuck am I trying to kid Anne? (not her real name) That’s not true. I’m constantly in chronic pain due to my right hand side rib cage and a large part of my right shoulder-blade being taken out when I had surgery to remove the tumour from hell”. 

I then said; “I’m sorry about that, but I find it’s easier to say I’m ok or feeling quite good as a lot of people don’t want to hear how I am actually feeling, for their own good reasons. Oh Anne, you know what it’s like? But I really appreciate people and you for going out their way to ask about me and my health and sorry for the rant.”

Anne then gave me hug and said, “it’s ok Kevin, I’ve known you for years and it’s just terrible that you go through that. But I like how you deal with it.”

That’s the first time in public that I have said this and it actually felt quite good to be able to come out and say how I really am feeling.

END OF AN ERA – MENTAL HEALTH

Last week, I had my very last home visit by my Community Practice Nurse (CPN), Wendy. Due to my depression and my general mental health and well-being, I started to see Wendy not long after I had my 30 radiotherapy treatments between mid January to mid February 2016.

Myself and Kirsty both got on well with Wendy and we both found her to be professional, approachable and a really nice person. I will miss my appointments with Wendy as I often felt at ease and I was able to get things of my chest about my health. 

END OF AN ERA – SAMH THE SCOTTISH ASSOCIATION FOR MENTAL HEALTH – AND NEW BEGINNINGS

On Tuesday morning, I went to a meeting with Rachel the Peer Support Volunteer Co-ordinator for SAMH. I am now officially a volunteer with SAMH and we were going over the organisations key policies. Also what I need to know and do as representative of this charity.

This actually turned out to be the last time that I will meet with Rachel in her role with SAMH as this was her second last day working for the organisation. Rachel was telling me about her new job and the exciting new challenges that are in front of her.

I got on really well with Rachel as she has been very supportive of me and she is a really friendly person. We’ve had a good laugh at some of our meetings and as I found out when I was working, this helps that you can have a laugh with the person and people you work with. I will miss working with her and I wish her well her new position and I told her that at my meeting.

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Appearing in the photo from left to right: Terri – Peer Support ALBA; Nina; Me with the silly smile and Rachel Peer Support – volunteers.

Rachel is also an extremely talented young artist. You can find Rachel’s work at:

https://www.curiousegg.com/artist-profile-rachel-lee/

THANK YOU

Thank you to the people who have either recently ‘liked’ the One of Fifteen Facebook page or started to follow my @oneoffifteen15 Twitter account. Also to the people that are following oneoffifteen.com by signing up to have it sent to your email account.

Also I would like to thank everyone that continues to support me and the campaign. I really do appreciate this support. Thanks to you I have managed to get 3 people from different countries around the world that have to deal with the rare cancer Malignant Myopericytoma.

Finally,if you like your live music and going to gigs, then please keep an eye on this page as there will be an announcement about an event I am co-promoting on 6th April 2019. This will be a really good event and we are willing to raise much-needed funds to a cancer charity.

Thank you for reading this and have a good weekend.

Best wishes

Kev

LIFE IN SEVERE CHRONIC PAIN – PART 2

LIFE IN CHRONIC PAIN PART 2
WHERE DO WE GO FROM HERE?

This looks at when I was first diagnosed with a para-spinal tumour, after being mis-diagnosed for 3 and a half years.

The how my medical care was then passed on to the Western General Hospital Edinburgh.

 

WHERE DO WE GO FROM HERE?

I published the first part of; LIFE IN CHRONIC PAIN – PART 1 DISCOVERY away back in May 2017. Just click on the link below and that will take you to the first part of my story.

https://wordpress.com/post/oneoffifteen.com/46

I have also included the final 3 paragraphs from that Blog if you can’t be bothered to go back and read it all again.

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 can’t 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.

WHERE DO WE GO FROM HERE?

 

Friday 5th November 2010 really was a horrible day. The day started with the funeral of a close friend, Diane Kerr. Diane was a really lovely woman, the same can be said of all her family. The funeral was taking place at The Masterton Crematorium in Dunfermline and afterwards at the King Malcolm Hotel Dunfermline.

Myself and Kirsty went with my mate Stuart. Diane was originally from Dublin Northern Ireland and she and her husband Alistair (Spike) loved the Folk music scene. The funeral was mobbed by her friends in the Folk scene, from many locals and many people from the world of politics, including former Prime Minister Gordon Brown. She was well loved and well respected and I still miss her to this day.

I was close to her as when I stood as a Labour Party Candidate in 1990, Diane was my election agent. I have wondered for a while what she would have fought about me being a member of the SNP now?

People travelled from the USA, Northern Ireland, South Africa and all parts of the UK. My good mate Iain who introduced me to her and Spike and the world of politics at a young age travelled up from London. It was great to see him.

At 15:00, I had an appointment with my GP at the Dalgety Bay Medical Centre and Iain joined myself and Kirsty in a taxi down to Dalgety Bay. We had time to enjoy a drink in our old haunt, The Hope Tryst before my appointment. When the time was approaching, Iain stayed in the bar and Kirsty and myself walked over to the GP surgery.

We were only in the waiting room for a few minutes before my name was heard coming out from the tannoy to say that I was in Room 7. Due to us being at a funeral earlier, I was still suited and booted and Kirsty was dressed really smart. When we just entered the room for the GP appointment, the first thing I can remember Dr Garmany saying “you both look very smart”. Then I said, “Thanks doc, but we have just been at a funeral”. After that, it was down to business.

I can’t remember how long we were in the appointment for but when Dr Garmany told me and Kirsty the results from a recent CT scan and 2 MRI scans I can remember him asking how I was feeling. I said something along the lines off, “I am pleased to know that I have got a tumour after all this time of wondering what was wrong with me”. I continued by saying that “ I’m sad though to find out that it’s a para-spinal tumour”.

Dr Garmany then told us that my care was automatically being transferred to the Western General Hospital Edinburgh (WGH) from Dunfermline’s Queen Margaret Hospital (QMH). He also said that I should hear from the WGH quite quickly. Just as we were getting ready to leave, he said to us, “So what are you going to do know Mr O’Neil and Mrs O’Neil?” I replied with “we have left our mate from London in the pub, he was also at the funeral so were are going to get pished”. “Quite right you deserve a good drink considering what you have both been through recently”. And that’s exactly what we did, get pished!

T5 & T6 VERTIBRATES AND A PARA-SPINAL TUMOUR

On Friday 19th November 2010 I had my first of many many other appointments through the next 8 years at the Western General Hospital in Edinburgh. The appointment on this day was with my consultant surgeon, Mr Yanis Fouyas. Myself, Kirsty, my sister Theresa and brother-in-law Patrick came across with us for moral support.

The appointment itself was at the Department of Clinical Neuroscience (DCN) at the Western General Hospital. Myself and Kirsty asked my sister Theresa to join us at this first appointment due to her being a Senior Charge Nurse with years of experience. We both felt that due to the nature of the appointment, there might be some questions we would maybe forget to ask, after all, you only get twenty minutes with the consultant.

There’s a lot of that appointment I can’t remember, but I do remember asking him if the surgery would be in the next week. His reply was a simple “No” followed by, “Mr O’Neil, this is an extremely complicated high-risk surgical procedure that I will be carrying out on you. It will last for around 9 hour’s plus, and I also have to bring in other specialised surgeons to work on you”.

“Is there any reason you ask?” My reply was, “Well yeah, I was of the understanding that once I saw you it was to arrange the date for surgery. But I am also going to Berlin on Monday to see Marillion supporting Deep Purple”. We had a wee laugh and he said: “your gig has come at a really good time for you, so I hope that you have a really good time”.

I can remember that the first thing I did when the appointment had finished, I had headed straight to the toilet as I felt as if I was bursting. I felt really down and emotional, but I didn’t want anyone to see me that way, so after doing my business I washed my hands and my face.

Coming out of the toilet I noticed that Theresa was comforting Kirsty as she had been crying. I said to Kirsty, “What’s wrong pal, it will be ok,” Kirsty then replied with “I’m so sorry Kev, I’ve tried to be strong for you and I’ve let you down by crying. I didn’t want you to see me like this as you have been so strong.” I gave her a kiss and a cuddle and then said something like, “It’s ok”. Then when we got back in the car Kirsty then said, “Oh fuck it, Berlin here we come”. 

When we were back on the road someone suggested we stop for a coffee at Craigies Farm. That was the first time that I had ever been there and I was really impressed with the whole set up of the place.

BERLIN

The day to fly out to Berlin was finally with us, it seemed a good while ago that I first mentioned this gig to Kirsty. Once we both had annual leave arranged from our work, we then booked flight tickets, gig tickets and our accommodation.

I was now on sick leave and had only just been diagnosed with a para-spinal tumour and I would be tired quite quickly. When speaking at appointments with my GP and Consultant Surgeon, they both recommended that we didn’t cancel, unless my health rapidly went downhill. The GP and Surgeon both said that this trip would do me the world of good and hopefully it would take the mind off my health concerns.

So Monday 22nd November 2010, we flew from Edinburgh Airport to Berlin. Our flight arrived in Berlin just after 16:00 and the gig was starting at around 19:30. We managed to get to our hotel just after 17:00 so we had time for a quick wash. We were staying at the Motel One Hotel in the amazing Alexanderplatz area of Berlin

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We picked that hotel as my mate Neil stayed there when he was in Berlin for a gig and it was close to the venue; Max-Schmeling-Hall. We also picked the hotel as we were next to the train station at Alexanderplatz and the U2 line on the underground.

We got to the venue in good time, thanks to a couple of German guys that were going to the gig that was on the same tube as us. The venue itself was a fair size with a fairly decent audience. Someone said later that there was about 8,000 at the gig, who am I to argue.

There were three bands on that night and I’ve still not got a clue who the first band were. They were actually ok as well. Put it this way, I’ve seen worse.

So for my fellow Marillion fans, the setlist that night was:

The Invisible Man; King; Easter; Cover My Eyes (Pain in Heaven); Slainthe Mhath; Hooks In You; Kayleigh and they finished the set with Neverland.

The band were on top form and Steve Hogarth’s voice was excellent that night. He was also a really good laugh with the audience, especially when he was introducing Kayleigh: “Here’s a song that we don’t usually play that much these days, so fuck it, here’s Kayleigh”.

 

We maybe had to wait for a good half an hour before Deep Purple came on and what a set they played. I’ve seen Deep Purple before this gig, but I thought that they were really good in Berlin. I remember asking Kirsty what she thought about Deep Purple and she said that they were quite good!

After a really good gig, it was back on the U2 to Alexanderplatz and straight back to the hotel bar for a nightcap.

After a decent sleep and once washed and dressed we headed out for the day. For breakfast, we ended up having it in a cafe at the massive underground station at Alexanderplatz. It was after having something to eat when we decided what to do for the day. We decided to go on U2 line again and we headed out to the Olympiastadion. It must have taken around 40 mins or so to get there on the underground.

When we finally got off the underground at the Olympiastadion, I was blown away at how clean and tidy the area was and how the paths and giant walkways originally build for the 1936 Olympic Games were in excellent condition.

Every hour or so I was finding that I would have to sit down somewhere to sit so that I could take my breakthrough pain relief. We stopped for five minutes at the ticket office after we had bought our tickets.

The whole site where the Olympiastadion and the 1936 Olympic Park was really impressive. Thanks to watching some of the Bundesliga on Sky Sports, I did know that Hertha BSC played in the Olympiastadion but I have no idea when it was built.

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When we first walked through the main entrance gates, you could see the original bell that was in the Olympic Park’s Bell Tower. The bell was massive and you could see the swastika on it with deliberate marks on it to deface it. I was reading that this is the only swastika on display across the whole of Germany.

 

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We both decided to walk down towards the original 1936 stadium first. When we got there it was securely fenced off. The track and field were in great condition along with the main stand. You actually looked down to this site and you can make out quite clearly where Hitler famously turned his back on the brilliant Jesse Owens. I remember saying to Kirsty at the time that a strange feeling came over me when I was standing looking down at that site. It was not the nicest of feelings!

We then went into the Olympiastadion. Wow, what a stadium that place is. When I was a season ticket holder at Celtic Park, my seats were in the second row from the back of the North stand. The seats at Celtic Park were high up, not as high as the back row at this stadium.

We spent quite a bit in when we visited the Olympiastadion and the Olympic Park and it was a really good way to spend the morning. After coffee and cake, we went back to the underground station to head back to Alexanderplatz as I was feeling really tired and I had experienced a couple of pain flare-ups.

When we went back to Alexanderplatz, I went back to the hotel for a rest while Kirsty went on some retail therapy.

I try my best not spend the day in bed when I’m away, so after a decent rest, we headed back out to explore other sights in Berlin. We spend some time at the Brandenburg Gate, browsed at the JF Kennedy shop at the JFK museum and went to see Check Point Charlie. We were lucky as the Traditional German Christmas Markets had not long opened for the festive trade, so we spent a fair bit of time at a few of them.

Two days just wasn’t enough time in Berlin. I really enjoyed my time there and I know that Kirsty did as well. As I mentioned earlier my surgeon had said that the gig and time in Berlin came at a good time, it certainly did as we were able to enjoy ourselves, relax and take my mind off the fact that I had a tumour on my spine.

MEDICAL APPOINTMENTS, THE FESTIVE PERIOD, MORE MEDICAL APPOINTMENTS AND FINALLY SURGERY.

I had quite a few medical appointments throughout December that were starting to wear me down. A couple of my UNISON colleagues, Derek Durkin and John Halkett, came through to Inverkeithing to see how I was keeping. It was the first time in a while that I had been out for a drink. We really did have a good laugh and it was good to see the guys.

I couldn’t bring myself to go to my work’s Christmas Lunch that year, it was quite ironic as well, as I had picked out the venue. I heard that it went well and not a bad word was said about the place they went to.

As for Christmas, Christmas morning was relatively a quiet affair and later on, we went to my niece, Anne Marie’s for dinner, etc.

JANUARY 2011 – NOT LONG TOO WAIT FOR SURGERY NOW

Into 2011 and it was roughly now around 3 weeks before surgery. I had an appointment with my GP and then it was the Thursday before going into the WGH for my surgery I was at the in-patient pre-admission clinic. 

Kirsty came over with me for the pre-admission clinic at the DCN Unit at the WGH. Not that I knew this at the time, but this was the first of what would be three visits to this pre-admission clinic. The appointment started with us meeting the two nurses (separately) from the DCN that is responsible for organising and arranging these clinics.

The nurses explained to us what would happen at this clinic, then most importantly, on the day of surgery. The nurse then took my height and weight and then I had to wait to see a junior doctor. The purpose of seeing the junior doctor was that she was wanting to check my reflexes, it wasn’t just a matter of being hit by a hammer.

After my time with the junior doctor, it was back to the waiting area at the DCN unit. It wasn’t that particularly busy that morning so finding a seat wasn’t a problem. We were waiting to see the anaesthetist when we were told that there would be a slight delay in seeing her as she was still in an operating theatre. This gave us time to get a coffee from the vending machine and a few games of Scrabble on my iPad. The times Kirsty was coming with me to an appointment we would take the iPad and play Scrabble. We found it as a great way to take our minds off waiting around, and of course, 9 times out of 10, Kirsty would ‘whoop my ass’ at the game.

All things considered, we only waited for twenty minutes and then we were introduced to the main anaesthetist that would be in surgery and keeping an eye on throughout surgery.

All I can remember about her name was her Christian name, Sue. When we first met I asked her if I called her Sue or Doctor, she replied that she was happy with being called Sue. Then we listened to the description of what would happen on the day of surgery. 

After we heard about what would happen when we would prior to the actual operation I asked if the consultant surgeon, Mr Yanis Fouyas would be joining us and Sue said “No, and Mr Fouyas says that he’s sorry that he can’t join you Kevin and Kirsty and he’s asked me to explain to you what would happen during surgery as he has been called into theatre. I can recall saying, “ah well Sue, shit happens” and we had a wee laugh.

We were first informed that the operation would/should last around 9 hours and that a thoracic surgeon from the RIE would also be working on me. In total, we were told that 3 surgeons would work on me, along with 3 anaesthetist’s and 3 registrars would also work on me, along with the normal amount of nursing staff. Due to the WGH being a cancer centre of excellence and a university, I was asked if it would be ok if some student’s training to be surgeons etc could observe. I explained that I have no problem what so ever with that.

I then asked what the operation was called and what happens during it. So first of all, Sue said that the operation itself is called a Thoracotomy and it is a high-risk procedure. Then I was told that during the operation that, once comfortable on the operating bed I would be given a general anaesthetic to ‘knock me out’.  

Once fully knocked out I would be put on my side then I would be prepared for surgery. Then I will be cut open followed by my ribs being cracked open, my right lung would then be collapsed, a chest drain would then be fitted then after all that, the tumour would be removed. 

After hearing that I just didn’t know how to react, I turned round to Kirsty and said that the moment the appointment had finished, we were going to the Telford Arms Pub for a drink. I was need of a drink after hearing what was going to happen to me during surgery.

I had actually been calm throughout all of the pre-admission appointment up until that moment I found out what a thoracotomy was. I actually felt freaked out when I heard that and I said as much to the anaesthetist. Of course, she was only telling me the answer to the question I had asked. I liked Sue, Kirsty said as much as well as she was so straight telling us everything to expect during and after surgery.

After saying goodbye to the medical staff we saw earlier, we walked up to the Telford Arms Pub. We only had a drink each as my brother-in-law Patrick was driving us back home to Inverkeithing. I can remember that drink going down really well. I only had a few days to wait now to finally have surgery and hopefully, that would mean a reduction of the pain I was experiencing daily. 

The Queenferry Crossing in the #Harr

I took this photo from the X51 Service from Dunfermline to Livingston, while it crossed the #Forthroadbridge.

The last time I was on an empty FRB was when it was closed for maintenance and I had @nhsfife patient transport to go to the Cancer Centre. That really was surreal going across the bridge like that.

A LATTE, A BACON ROLL AND A BRAW FRUIT SCONE  

I was at the Fife Victoria Hospital in Kirkcaldy for an appointment earlier today. This was with the Urology Department for the Nurse Led Clinic Non Video Urodynamics KY.

Now I have no intention of going into any of the gory details of what went on, let’s just say I was left feeling ‘a bit empty’   with a ‘tingling sensation’. I also felt really hungry as I didn’t have any breakfast due to the early start. The nurse that took me through it all was excellent. This was a person who was very thorough – telling me exactly what would happen during the procedure. Also what I should expect to happen and how I should/would feel. I was in the hands of a nurse that cared and also enjoyed their job.

I’ve always been a believer of praising someone; a group of people etc when they have been excellent with you. This nurse really is a credit to NHS Fife. My appointment started at 09:00 and we were finished by 11:10. All of the staff at the Urology Department were great with me and the other patients. They were also friendly and a good laugh as well.

Once I tidied myself and freshened up, I headed to the WVRS cafe. As I mentioned, I was hungry.  So it will come as no surprise to some people, especially my former UNISON colleagues, I got myself a latte, a bacon roll and a braw fruit scone. One of the staff carried my order over to the seat I was sitting at. I had a good laugh with them member of staff and thanked her for the kindness. I’m not sure if she had noticed my hands shaking or not, but I really appreciated her doing this for me.

It’s the small things like that you remember and you then tend to go back to that cafe, rather the others in some hospitals like Costa Coffee etc.At one point three WVRS staff members were dealing with my order. I couldn’t help but feel that it was so effective and efficient. All the staff in this cafe really were great and friendly with me.

Thank you for reading this entry. Can you please for my social media details on for me please.

They are:

Twitter: @oneoffifteen15

Facebook: One of Fifteen

Blog: oneoffifteen.com

The more people I have signed up to my social media sites, then I have a better chance of meeting more patients with the rare form of cancer: Malignant Myopericytoma

Best wishes

Kevin

WAKANDA FOREVER

WAKANDA FOREVER

A BIRTHDAY CELEBRATION

It was Kirsty’s birthday last week and her parents very kindly had wee Nathan at their house so that we could enjoy a rare night out together to celebrate.

Kirsty had suggested going over to Edinburgh, catch a movie and then have a drink and something to eat. We went to the VUE in The OMNI Centre and we went to see; Avenger’s – Infinity War. With it being Kirsty’s birthday I thought, ‘at the end of the day, it’s Kirsty’s day and who am I to turn round and say that I wouldn’t go to see it’!

Seriously though, I am a massive fan of graphic novels and comic books, especially Marvel and DC. Kirsty enjoys some movies and their story lines that have originated from these books. So I was delighted that we went to see this as the both of us have been patiently waiting for it’s release as we’ve seen Avenger’s – Assemble and Avenger’s – Age of Ultron.

I thoroughly enjoyed the film, this was despite taking at least ‘2 pain flare ups’, then feeling tired after taking my break through pain relief medication. Then on top of that, there was my usual fidgeting about in the seats as my bum often goes numb when I’m at the movies.

Despite being in chronic pain 24/7, and despite the couple of pain flare ups that I had, I was able to ‘turn off’ from thinking about pain. As for the film itself I only have one word to describe it,………….. .

Go and take a guess what the word is, make a comment about it on any of the One of Fifteen social media sites and the first correct comment will win a prize. I’m being serious here.

At the scene when King T’Challa shouts out “Wakanda Forever” I could feel the hairs on the back of my neck rising. When I go to see a movie its got to be dead quiet and calm, however, I just couldn’t help shouting out “Wakanda Forever” myself for a laugh.

After the movie we went for a meal and it was really good to have time with Kirsty on our own. After getting the train back home to Inverkeithing I was in a lot of pain and I felt really knackered.

We left Inverkeithing not long after 12:00 that day and it must have been after 22:00 when we got back home. It wasn’t just a matter of getting washed and dressed to go out. I had to take time to plan the exact amount of medications I would need to take that day, taking inconsideration of when I take them and where I would be on that day. There is times that I feel uncomfortable when I’m out and knowing that I need to take my medications. Then there’s other times that it really doesn’t bother me. When I first started to take Methadone, I would be a wee bit ‘paranoid’ of taking it outdoors on days out, holidays etc. I was also the same when I started taking Sativex.

These days I just accept it and get on with it, regardless of where I am. For instance when I was in Dublin last month at the Marillion gig, my seat was right in the centre of the front row. I was that close to the singer Steve Hogarth, if I put my arm out then I would have touched him. There was at least 3 occasions that I had to take Methadone during the gig and he must have seen me at least 2 times when I was measuring it into a syringe for the correct amount.

Then a couple of days later, there was a few times that I would have to take it at either Dublin Airport or on the flight coming back home. At the end of the day it maybe bit of an inconvenience, however it’s thanks to that inconvenience I manage to keep myself going.

Thank you for taking the time to read this and please do not hesitate to get in touch with me if you have any questions about Malignant Myopericytoma, cancer(s), my pain relief regime, Glasgow Celtic FC and of course Marillion. 🙂 Also, thank you for your support.

Best wishes

Kevin