My 3rd year anniversary of the surgery that kept me alive was on Sunday 7 October 2018. So in a way, you can say that I could have celebrated my 3rd birthday on that day, but it was just a low profile day.

But before that day, I had a couple of medical appointments. The first appointment was on Wednesday 3 October 2018, this was at the Queen Margaret Hospital (QMH). This was for my the second of my twice yearly CT Scan of Chest/Abdomen/Pelvis.

The scan itself went fine, I was lucky if I was in the scanner for 20 minutes. Due to contrast being injected in me, I get a tingling sensation like I am going to pee myself then and there. Thankfully I haven’t done that, yet! Once the scan was finished I had to sit for 20 minutes before getting the cannula taken out of my arm. Then I was able to go home.

Thursday 4 October 2018, I had an appointment at the Western General Hospital (WGH) Edinburgh. This was for a MRI scan on the thoracic area of my body. Over the years I must have had over 20 odd MRI scans and I am usually fine with them. In the appointment letter you are reminded that the machine is really noisy and you’re asked to bring along a CD to listen to. My choice of music was Marillion and their Clutching at Straws album.

The opening track Hotel Hobbies then came over my headphones and the scan started. Before going into the ‘tunnel’ I had a cannula put into my right arm. Then it was under the tunnel for the scan to begin. The scan lasted roughly for 45 mins. The heat under the tunnel really was intense and due to the lack of space to move around, the pain in my right arm was so intolerable, I had to press the stop button. A member of staff came to see me to find out what was wrong. I was able to stretch my arm a few times before going back into the tunnel for the last 10 minutes. 

I was really glad when that scan was finished. When I came out of the tunnel, I was disorientated and really dizzy and I had to sit on the edge of the bed for several minutes before I was allowed to go back to the changing area and lockers.

I got the Scottish Ambulance Service (SAS) Patient Transport Service to take me to the WGH for my appointment and back. When you call to make arrangements for transport with the Patient Transport Service, you are asked several questions about your general health and also to see if you qualify under the service’s ‘Clinical need’ to qualify for transport. Let’s just say that I ‘passed the test with flying colours’, so the saying goes.

My driver today was Diane, she was very pleasant and she made sure that I got to the department ok. Once the scan was finished and I was dressed etc,  the department’s reception staff called Diane to say that I was ready to go.

There was another couple of patients with us and both were telling me about their own health issues. You could see that both were just glad that they had someone different to talk to, but also being listened to. 

One patient was a man in his 70’s and the other was a women at 83 years old. I honestly took the woman for being in her early 70’s and I had made her day when I told her that.

When I got back home, I felt totally drained and exhausted, then on top of that, the sweat was pouring out of me. Thats the first time I have felt like that after a MRI scan. Once I was dropped off at the house, I had something to eat and then I went for a rest.


Friday 5th October 2018 – I had arranged to meet with my local Member of Parliament, Douglas Chapman at his constituency office at The Euro Parc at Rosyth. Myself and Brian had been there a couple of weeks ago to discuss our Prog in the Park project. We both had a very good meeting with Douglas to discuss Prog in the Park and how Douglas can help us with this fundraising initiative for Maggie’s Centre’s and Sarcoma UK.

I am delighted with the way this meeting went and how Douglas is going to support me with One of Fifteen. I also had a personal issue that Douglas and June from his office are looking into for me. This is an issue that I really do appreciate what they are doing for me and I just can’t thank them enough.



Oh what it must be like to be a school kid these days. Nathan was off school from Monday 8 October 18 to Friday 19 October 18.

During that fortnight I had another couple of appointments to go to. First up was an appointment with my GP at Inverkeithing Medical Centre. This was on Tuesday 9 October 18. Any time I see my GP these days its a double appointment that I have to go for. This appointment went well and I have built up a good patient – doctor relationship with him over the last 16 years. He’s a really decent guy and all off the office staff are great with me.

Next up on the appointment front was my yearly appointment with the thoracic consultant surgeon that saved my live 3 years ago now.

On Monday 15 October 18, the Patient Transport Service came for me to take me to the Royal Infirmary Edinburgh (RIE). This time the driver was Elizabeth and there was another patient with us. It turned out that the other patient was an elderly man from Rosyth and he was telling about the surgery that he recently had.

He was telling me and Elizabeth that he had been discharged from the RIE two weeks ago. He also went on to tell us that the surgery he had was to remove a tumour from his chest (sounds familiar). He described where exactly on his chest the tumour was and how far the surgical team had to go in to cut the tumour out. He then told me that the name of the tumour was a Sarcoma and he told me that Sarcoma’s are rare and had I heard of them?” I then said, “yes, I do indeed know what a Sarcoma is. Out of 240 odd different types of cancers, well over 100 are Sarcoma’s. Also it effects something like 180 men in Scotland each year. I only know that as I had an extremely rare type of Sarcoma removed from the wall of my chest”.

 He then told me the name of his surgeon and I just smiled and said something along the lines of, “so what do you think of that surgeon then?”. “Well Kevin, I have nothing but praise for him after cutting that tumour out. Why do you ask? Do you know him?”. I just smiled and said “yes so do I, lets just say that he saved my life in February 2016”. Then you could have heard a pin drop.

I told him the consultant has saved my life 2 times. The first time in October 2015 when he was part of a big medical team that removed a massive tumour on my chest. Then he led the surgical team when I had a haematoma the size of my right lung when I was going through 30 intensive radiotherapy treatments.

Then after I described that to him, the question I just that he was going to ask me was next. “So whats your story then Kevin?” I looked at the driver then the man, then I asked the driver, “so how long do you reckon it will take to get to the RIE from here then Elizabeth?”. “Roughly, about 20 to 25 minutes”. So I just laughed and said to him, “ok, so it’s going to be the abridged version then”.

So during that time I gave them my health story from 2006 to October 2015. Then from January 2016 to now. Then after telling them that, I then said, “at the end of the day and even though I’m in severe chronic pain all the time, I am still living. There’s a lot of people out there that are worse off than me.”

Once we got parked at the RIE, it was time to walk along to Out-Patients 1 for my appointment. The mans appointment was first at 14:20 the mines was at 14:50.

While waiting for my appointment I sat with my eyes closed and I was enjoying the peace. Then all of a sudden I heard a familiar voice say, “Kevin O’Neil”. It was the thoracic consultant Mr Bill Walker, the man that saved my life.

I have nothing but respect for Mr Walker and his team. Before finally going into his office to talk about my health and the results from the recent scans, we were just taking about how he is keeping and I was asking him if his department was still as busy etc.

Then it was time for us to sit down and talk about how I have been keeping since the last time I saw him and how the pain has been. Then Mr Walker went into my file and got out a couple of letters and he said, “Kevin, please look at the bottom line in both these letters”. I couldn’t help but think, “oh what the fuck now”. Then I could see that Mr Walker was still smiling.

The first letter I looked at, the bottom line said, “There is no sign of any reoccurrence”. By this time I was feeling a lot more positive and focused, then I looked at the bottom line of the second letter. “There is no sign of any reoccurrence”.

After reading these letters I thought for a minute that he was going to take me back into surgery to remove the massive smile on my face!

I was then asked by Mr Walker, “well Kevin whats your views on this news?”. To this day I can’t remember what exactly I said, but I can remember turning around to shake his hand and saying, “thank you so much Mr Walker, thats the best news I have heard for a while now”. Kirsty would tell you that I am not an emotional kind of man but I felt so happy and emotional.

Once we got that side of my health out of the way, I explained to Mr Walker that I am prone to falling quite frequently and I end up giving myself some really sore knocks. After telling him that, Mr Walker told me that he is going to make the necessary arrangements for me to get my head scanned to see why I am falling as much. My appointment lasted just over 20 minutes and then it was time to go for my transport to go back home and tell Kirsty and Nathan my good news.


I had an appointment with pain clinic yesterday (Monday 22 October 18) at the QMH Dunfermline.

This appointment was from 10:30 to 11:30 and we discussed how ‘mindfulness’ tactics can help me when I get a pain flare up. My appointment was with Dr Brown and she is so nice and easy to get along with. At the end of the appointment I was given some homework and also a few mindfulness apps for my iPhone.

These appointments are every fortnight and I have another 8 of these to go.

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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