LIFE IN SEVERE CHRONIC PAIN – PART 2

 

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. 

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