FOUR YEARS

A DATE TO REMEMBER

The original idea was to post that this on Monday 7 October 2015, but due to the school holidays and fatigue, this is a date that I will always remember. Exactly four years ago was the day when a team of amazing people carried out surgery on me to save my life. Not only did this operation do exactly that, save my life, it also completely changed it. 

However, it could have been completely different, I could have quite easily died on that date! You see myself and Kirsty were both advised that not only was the surgery I needed life saving and life changing, it was also extremely high risk. That high, it could have killed me and this is something that I tend not to say lightly or even joke about, and a lot of people reading this know what my sense of humour is like!

Originally when I was informed by my thoracic surgeon, Mr Bill Walker at the Royal Infirmary Edinburgh (RIE) that the operation was ‘life saving’, I was very easy going about it. I reacted that way as I was ready in my own way to accept the news that there would be nothing that could be done, apart from putting me on a palliative care package to keep me comfortable. 

It was roughly three weeks later from that appointment with Mr Walker when I had the surgery, but in between that time I had quite a fair amount of appointments and other specialists to see. It was when I had my plastic surgeon appointment with Mr Hamilton at St John’s Hospital Livingstone and when he described how high risk the surgery was, it really hit me there and then.

You see Mr Hamilton described the surgery, in the best way to describe it was in, ‘lay man terms’. He described that how big the area that the surgeons were working in was that large, due to the tumour size (see photo below) then a plastic surgeon had to be there. He also said that it was an unusually large team that would be working on me. Included in that team was the surgeon from Edinburgh’s Western General Hospital (WGH) Mr Yannis Fouyas. 

Mr Fouyas is the neurosurgeon that operated on my spine 3 times, The first two operations were to remove a paraspinal tumour from the T5 & T6 vertebrates. These tumours are called ‘glomus’ tumours which are rare and the second operation was a reoccurrence from the first one. The third time Mr Fouyas operated on me was due to the titanium plate on my spine from the second operation had been ‘slipping’ against the T5 & T6 vertebrates and nerve endings.

However, on the day itself, Mr Fouyas was at the Western General Hospital but he was ‘on-call for me’. This was just incase something was to go wrong, and he would then be called for. 

The surgery lasted 12 hours, I had signed permission for one of the surgical team to write a report about the procedure for the British Medical Journey (BMJ). I also signed permission for a photographer to be present during the whole operation. The photos were taken due to ‘how rare my case was’ and this was before the whole one of fifteen thing, but also to help trainee surgeons and also for medication reports etc.

The surgery lasted 12 hours, I had signed permission for one of the surgical team to write a report about the procedure for the British Medical Journey (BMJ). I also signed permission for a photographer to be present during the whole operation. The photos were taken due to ‘how rare my case was’ and this was before the whole one of fifteen thing, but also to help trainee surgeons and also for medication reports etc.

I got the photos a good while back and they are on this website. If you haven’t seen them before then they are also on my One of Fifteen campaign social media sites.

As for the BMJ article, I almost gave up on it as the surgeon that wrote is no longer working in Edinburgh. However just recently, I was carrying out an online search about malignant myopericytoma, when I came across a report called:

A  Glomus Tumour With Recurrence and Malignant Transformation in the Chest Wall: A Cautionary Tale of Seeding?

When I first came across the above named surgical report online, you could see that there was some familiar photographs included in it. When I saw some of the photographs within this then I knew that this was about me.

I tried to get access to the report, but I couldn’t open it due to being on a site for medical professionals. So I emailed one of thoracic surgeons that operated on me and asked him to send it to me. I received the report within a few minutes of me asking for it and it makes a fascinating read.

I was made fully aware of the pathology report about the tumour and the whole issue about how I am one of fifteen people in the world with malignant myopericytoma. One issue that I was fully aware of from the report was about Glomus tumours, but I was not aware that;

Glomus tumours are rare tumours most often occurring in the extremities of the limbs. We report a unique case of a glomus tumour, originally arising in the paraspinal region, which was excised and subsequently recurred in the chest wall with malignant transformation. The recurrence is likely to have been caused by wound seeding. To the best of our knowledge, this is the first report in the English literature of a glomus tumour recurrence secondary tothe notion of wound seeding.

(Ann Thorac2016 102:e397–9) 2016 by The Society of Thoracic Surgeons

English — 1.5 Billion Speakers (source – farandwide.com)

This is just a small excerpt from the report, but the last sentence in this really was completely new to me. I had no idea that this could be the first report in English literature of a glomus tumour recurrence secondary to the notion of wound seeding.

To say that I was ‘gobsmacked’ after reading the full report from the surgery really would be an understatement! When I heard four years ago from my oncologist that I was only 1of 15 people in the world with Malignant Myopericytoma I was really shocked and I still am. The world population is over 7.7 Billion people (source – worldometers.info) and being told that I am only 1 person out of 15 people worldwide really was overwhelming.

But then finding out that I can be the only person mentioned in English literature – 1.5 Billion people worldwide actually really shocked me. It was weird trying to think about it as when I was informed about the whole 1 of 15 people worldwide with Malignant Myopericytoma I actually had to give the phone to Kirsty. This was during a phone call from my oncologist 1 month after life saving surgery with the pathology results from the tumour. I just couldn’t take it in at first, then eventually it did.

But when reading the report and seeing on it that I am 1 out of 1.5 billion people to have a glomus tumour recurrence secondary to the notion of wound seeding, well that really struck me. I think a lot of it was down to seeing an actual figure and not thinking about our planet, that’s what struck me. 

I will sometime put a copy of the surgical report online one I seek the relevant permission to do so. However, if you work for a cancer charity or in the medical profession and you would like to read a copy, then contact me via the contact page on this site.

WORLD MENTAL HEALTH DAY

World Mental Health Day (10 October) is a day for global mental health education, awareness and advocacy against social stigma. … 

This day, each October, thousands of supporters come to celebrate this annual awareness program to bring attention to mental illness and its major effects on peoples’ life worldwide.

I was diagnosed myself with depression, something I tend not to talk that much about it as well, but I do talk about. However, I have managed to come to terms with it, but it’s a subject that so many people struggle to deal with. So people are like this as they feel embarassed, they can feel completely useless, feel like a hinderence at work and at home and feel lonely. This is exactly how I felt when I was first diagnosed with depression and it doesn’t need to be this way. Even though I am married to a great wife and have 3 great son’s and anything but lonely, at times thats exactly what depression can do to me.

The theme of this year’s World Mental Health Day is suicide and suicide prevention.

Every year close to 800,000 people globally take their own life and there are many more people who attempt suicide. Every suicide is a tragedy that affects families, communities and has long-lasting effects on the people left behind. It’s the leading cause of death among young people aged 20-34 years in the UK and is the second leading cause of death among 15-29 year-olds globally.

SUICIDE PREVENTION: WAIT

Prevention is something that we can all individually help with. Sometimes a wee chat with someone can sometimes be enough to make the difference between life and death for them.

The advice ‘WAIT’ is one good way to remember how you can support another person who may be suicidal. It stands for: 

Watch out for signs of distress and uncharacteristic behaviour

  •  e.g. social withdrawal, excessive quietness, irritability, uncharacteristic outburst, talking about death or suicide

Ask “are you having suicidal thoughts?”

  • Asking about suicide does not encourage it, nor does it lead a person to start thinking about it; in fact it may help prevent it, and can start a potentially life-saving conversation
  • It will pass – assure your loved one that, with help, their suicidal feelings will pass with time

Talk to others – encourage your loved one to seek help from a GP or health professional

Why not share the graphic below, which summarises suicide prevention advice and help get a message across to some one that needs our help and support.

For further information, please visit

https://www.time-to-change.org.uk

Thank you for reading and your continued support – Kevin O’Neil

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