THE RESTORATION OF MY FAITH IN HUMANITY!

RANDOM ACTS OF KINDNESS

With everything that is going on across the UK with Coronavirus and the level of selfishness that we are witnessing daily, my faith in humanity was restored on Tuesday 12 May 2020.

It was roughly at 16.45 and the nurses had set me up to my ‘pic line’ so that I was able to get my third IV antibiotic treatment of the day. It must have been a good 10 minutes into the treatment and I could hear a phone call to the ward reception that is just outside the room that I am on the ward.

During this short phone call, I could hear my name being mentioned by a member of staff and her saying that I was “hooked up” to the IV line and getting treatment. Then the next thing I could hear was, “can you bring it up please?”

Then a few minutes later, a 12” Pepperoni pizza from Dominos had been handed in to me. This was right at the moment when we settle down for what is called in here at the Royal Infirmary Edinburgh (RIE), “suppertime”, 5.00PM. Now talk about perfect timing or what!!

The pizza was bought for me by Paul a fellow patient that shared Room 16 on Ward 102 with me for a few days before going in for his operation. What had come about is that we were discussing what we were looking forward to eating when we got out of the hospital and back home. For some reason, I had said a Dominos Pepperoni Pizza and Paul had remembered this.

In my time I have been so fortunate to have met so many people that I would class as a ‘good guy’ and Paul is certainly one of them. He is a 73 years old (he looks a young 60-year-old) married gentleman from Edinburgh and he was telling me that he still works.

He had been telling me that throughout his years, he had been fortunate enough to work around the world as a deep-sea diver.

When we were discussing where we lived, he told me that once he owned a property in Inverkeithing at the Ballast Bank known as the ‘shed’. At the time, the company he had made small deep-sea exploratory submarines. I actually remember this company very well as when it first opened the media had covered it.

We had a really good discussion about Inverkeithing as at the time when I used to frequent the Queens Bar, he drank there and in the old lounge in the Queens Hotel.

Before being discharged, Paul had come along to my room to see me and say goodbye. I had really enjoyed spending some time in his company while he was a patient in the hospital beside me, his stories helped the day go a lot quicker.

 

FEELING FRESH

When I was first hospitalised to the Victoria Hospital Kirkcaldy (VHK) a few weeks ago now, little did myself and Kirsty know that I was actually so ill, never mind that I would have to stay in the hospital for so long.

As the ambulance was en route for me to take me to the VHK, Kirsty had packed clothes and toiletries for me. There were enough clothes etc for a few days for me. These didn’t last that long and by then I was now a patient at the RIE.

I found out that patients were able to get clean clothes and other stuff dropped off for them. So I was delighted that my niece Anne Marie brought clean fresh laundry for me a few weeks ago.

When a family member or friend is doing this, its a matter of the person being able to press the bell on the door of the ward, then a staff member then is able to pick this up and then bring it around to you at your bed (room). The rules brought in to deal with coronavirus mean that you can’t see the person.

Once I had run out of clean clothes again, my mate Andrew had brought even more across for me last week. Both had quite a bit of dirty laundry to go back to Kirsty.

Andrew had asked me if I was needing some things picked up from the shops when he was coming across, so I sent him a wee shopping line. It was things like cans of Coke, Crisps, Scotch Eggs etc.

When Andrew had arrived at the ward to drop the clothes and shopping off, the ward senior charge nurse let me go to see him briefly, as long as I had my mask on to ‘protect myself’. It was really good to catch up with him. When he left and when I went back to the ward, the first thing I did was get some salt and eat the Scotch Eggs. They were braw and went down a treat.

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FEELING FRESHER

I really can’t remember who it was that I had been talking to, but I had been saying that I would be asking Kirsty to shave my hair as it was starting to look like a ‘burst couch’.

On Sunday afternoon, one of the nursing staff, Kelly had heard me talking about this and to my surprise, she said that she would quite happily do this for me. However, Kelly had explained that the clippers she had would cut my hair really short as these were surgical clippers, the ones used to shave patients before going for surgery. I had just laughed and said that is exactly what I was after, then a few minutes later I had a great short haircut. This was exactly what I was after and certainly no complaints from me about the shortness.

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At the end of the day, I am so grateful to Kelly for doing this for me. Now Kelly really didn’t have to do this for me and I was and still am grateful for this. At the end of the day, I see this as another random ‘act of kindness’. I have thanked her for this kind act as I am grateful for the work that her and all nursing colleagues do for me and continue to do for me while being a patient at the RIE on Ward 102.

INTERNATIONAL NURSES DAY

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On Tuesday 12th May 2020, it was International Nurses Day. I have already highlighted this on my Facebook page and the One of Fifteen Facebook page.

I have always had admiration for the work that nursing staff do. This goes back to when my mum was a nurse when I was a lot younger, a lot lot younger.

My mum had worked on the various hospitals that used to be in Dunfermline before the four were knocked down. My mum before she retired from the health service went on to be a ‘district nurse’ and this was a job she really enjoyed. 

My sister Theresa was also a nurse, a senior charge nurse in charge of a mental health day hospital in the Queen Margaret Hospital (QMH) Dunfermline before she retired. 

Finally, my sister-in-law, Nicolle is a nurse at the QMH Dunfermline. So it’s fair to say that due to this family affair with nursing, I have nothing but admiration for every single nurse.

My mum used to say that for her it wasn’t a ‘career’, for her it was a ‘calling’, ‘a calling to help people when they need help the most’!

Remember everyone, stay save stay alive.

Kevin

 

 

 

INTERNATIONAL NURSES DAY – 12 MAY

Nurses care for our loved ones at some of the most difficult times in their lives. Right now, the care and attention that I am receiving from the nurses on Ward 102 at the Royal Infirmary Edinburgh (RIE) really is fantastic. Then when we turn on our TV’s and watch the news and see what nurses are doing during this coronavirus pandemic really leaves me in awe of them.

I have always had admiration of the work that nursing staff do and carry out on a daily basis. This goes back to when my mum was a nurse when I was a lot younger, a lot lot younger.

I can remember growing up when she was training, when she qualified and when she went on to work on the wards in various hospitals in Dunfermline.

My mum later went on to be a ‘district nurse’, a job that she enjoyed before her nursing career was cut short due to ill health. My mum passed on so much encouragement to many many students nurses and she was well respected due to this caring quality about her. Still to this day, when I see a nurse at my local health centre, Helen, she speaks so fondly about her before I get an injection in my arse!

My sister Theresa was also a nurse, a senior charge nurse in charge of a mental health day hospital at the Queen Margaret Hospital (QMH) Dunfermline before she recently retired.

Nicolle my sister-in-law is also nurse and she works at the QMH Dunfermline. So it’s fair to say that due to this family affair with nursing, I have nothing but admiration for every single nurse and I am in awe of them.

My mum used to say that for her it wasn’t a ‘career’, for her, it was a ‘calling’, a calling that would let her help people when they need help the most in their lives!

Being totally honest, it wasn’t until a few days ago that I became aware that the date of International Nurses Day was today. Please support this day and celebrate it for our nursing staff as this is a unique group of staff and people that deserve this worldwide recognition.

Stay safe and stay alive,

Kevin

PROG IN THE PARK 2.0 UPDATE – TUESDAY 5 MAY 2020

PROG IN THE PARK 2.0 UPDATE 

Please accept my apology for the lack of any updates on either the Prog in the Park 2.0 (PITP 2.0) Facebook Group, Facebook  Page or on proginthepark.com

PFollowing on from my admission to the Victoria Hospital Kirkcaldy (VHK) Fife in March with pneumonia, I find myself in the Royal Infirmary Edinburgh (RIE) where I have been battling severe infection. This has left me totally exhausted and in no way well enough to respond to ongoing PITP 2.0 or at times my day to day well being to loved ones.

Once again, the quality of care from staff with NHS Fife and NHS Lothian really has been amazing.

Please be rest assured that I postponed PITP2.0 due to Coronavirus Covid-19  and it will now go ahead in most likely April 21 and it will be in aid of MacMillan Cancer Support. Thank you so much to those people that have already bought their tickets for PITP 2.0 and they will automatically be transferred to the event next year. If anyone wants a refund that has bought a ticket, then please contact ticketlab.co.uk 

The original ticket price is £25.00 and that includes the booking fee. If I have to increase the ticket price then please note that existing ticket holders will have no extra to pay and any ticket increase will be kept very low.

There might be a change or two in the line up for PITP 2.0 and this is something that I will keep you updated.

Thank you so much for your understanding and I appreciate you support.

Stay safe, stay indoors and keep blasting out you favourite prog rock music.

Kevin O’Neil

APPOINTMENTS – POSTPONEMENTS – CANCELLATIONS AND CORONAVIRUS (COVID – 19)

My intention was to write an article about what I was going to call APPOINTMENTS, APPOINTMENTS, APPOINTMENTS for my One of Fifteen social media campaign. I actually wrote quite a bit about the number of appointments that I had earlier this year. This included the appointment for an MRI scan and scan results I got recently when I had my oncologist appointment.

Then last week I was dealing with Prog in the Park 2.0 and how Coronavirus (COVID – 19) is responsible for the number of concerts and other events being either postponed or cancelled. So I felt it was better to write what’s happening now!

MEDICAL CANCELLATIONS 

Today, Thursday 19 March 2020 I received either phone calls or text messages saying that three medical appointments would be cancelled.

When I was checking the answering machine after getting home after I dropped off Nathan at school. I had a missed call from the Sleep Clinic Royal Infirmary Edinburgh. 

I called back and I was told that my forthcoming appointment was now cancelled.

It wasn’t much longer than that when I received a text message from my local GP surgery which was letting me know that my next appointment is now cancelled. That appointment is for a date next week and due to all my health issues ongoing severe health issues, it was a double appointment. 

Then just around 2:00pm, I received a phone call from my physiotherapist. My next physio appointment which was due in the first week in April is now cancelled. When we were talking about cancelled appointments I was told that the physios were calling all their patients, not only to cancel appointments but also to ask how we are keeping and is there any issues that’s cropped up.

We had a good chat and I was told that if the physiotherapy department doesn’t hear back from me by the end of July 2020, I would be discharged. This is even though they are aware that some patients like me still need appointments. So basically I call back at the end of June to keep getting these appointments.

In the space of a few hours, three of my regular medical appointments were cancelled. However, I know that this is only the start of what will be more to come. I fully understand that the Corona Virus (COVID-19) is the number 1 priority for our NHS. 

It really is the times like this and with this crisis in place that we really do need to get behind our NHS and not go about making flippant negative comments that we all hear from some people. 

POSTPONEMENTS

I had to make and take a hard decision about Prog in the Park 2.0 and if it goes ahead or not. At the end of the day, the last thing I want to do is put my own health, my families, friends and those attending health at risk. So I wrote to the venue, pa company, bands, stallholders and everyone involved that I was postponing PITP 2.0.

I put the following statement on the PITP 2.0 Facebook group and page;

PROG IN THE PARK 2.0 STATEMENT ON CORONA VIRUS (COVID 19)

Thank you for your patience about Prog in the Park 2.0 (PITP 2.0) and if it still goes ahead on Saturday 4th April 2020 or if it’s postponed. I did promise a statement on it this weekend.

At the time of writing this, a Facebook alert came up regarding the Fish gig at the end of the month in Edinburgh. This coronavirus is really hammering into all aspects of life and I am not prepared to take a cavalier attitude with it.

One thing I am not prepared to do is put myself, my family, my friends, and everyone involved with the production of PITP 2.0 and every one of you that was intending to be there at risk.

It really is with a heavy heart that after taking counsel, I am postponing PITP 2.0. There has been a lot of hard work been put into this by myself and others and I am gutted that it is now postponed.

I would like to thank everyone that has assisted me with PITP 2.0 and rest assured it will be going ahead later in the year.

Best wishes

Kevin O’Neil

If you have bought a ticket for PITP2.0 then this will be fully transferable to the rescheduled event.

A lot of work was put into PITP 2.0 and it was going to be a cracking day. This week I have been chilling out and looking after my health. Next week I will be working on finding an alternative date for all concerned.

Thank you for the support that you have all given me.

This virus is going to go on for several months and who knows the effect it will take across all aspects of society. Please take care and stay safe. #Coronavirusisabawbag

 

APPOINTMENTS, APPOINTMENTS, APPOINTMENTS

When it comes to updating this website recently, the best word to describe it is “tardy”. 

I am sorry that I haven’t updated this site for a while. I could go into the depths of my ‘bullshit’ reason/s why this hasn’t happened, but so much has been going on recently.

I have had a lot of various appointments recently and some of these have been medical. Other appointments have been with MacMillan Cancer Support and other appointments have been to do with Scotland’s Indoor Prog Rock Festival in aid of cancer charities, Prog in the Park.

MEDICAL APPOINTMENTS

I am at the stage in my life that my health appointments are basically like a car MOT. A lot of cancer patients will describe their appointments after surgery and then their treatments package of either radiotherapy or chemotherapy like this. I have had surgery and then radiotherapy so many times now and when the appointments are all finished it feels bizarre 

So the stage I am at now is that I have a CT and MRI scan once a year (unless I am rushed into the hospital). I will most likely have these appointments at either the Queen Margaret Hospital Dunfermline or Victoria Hospital Kirkcaldy.

Then when my scan is finished, the results of these are then sent to my oncologist at the DCN Unit at the Western General Hospital Edinburgh. 

Throughout the year I have numerous other appointments I attend. I see my GP at least once every two months. Due to how complex my health needs are now, my GP tells me to book a double appointment. These appointments are at Inverkeithing Medical Group Friary Court Inverkeithing.

Then every twelve weeks I see a consultant at the Victoria Hospital Kirkcaldy for botox injections into my right shoulder blade. These injections help with the area where one-third of this shoulder blade was removed.

Every ten weeks I see a nurse at my local GP practice. This is for my HRT injections up my backside. With a combination of five major operations, 60 radiotherapy treatments and two proton sessions, this has eradicated my natural testosterone levels. 

The botox and HRT appointments are a programme of appointments I have to go for until I die. 

Then every six weeks I get my physiotherapy sessions to help with the way my head lies to one side. These are at the medical practice in Dalgety Bay. They are usually at a time that I get a bus once I have dropped off Nathan at school and I have time for either a coffee or a cooked breakfast.

There are other hospital appointments that I have throughout the year, but I won’t bother going into detail about them.

Someone once said to me, “oh I don’t know how you cope with having to go for all of those appointments”. My answer is quite simple really, “at the end of the day, I just get on with it. After all, this routine is about helping me to get better, as I want a better lifestyle”. “I want to feel better so that I can have more and more quality time with my wife and son’s”.

There have been other times when I am out and about and some people will say, “ Good morning or hi Kev or Kevin, how are you today?” My reply is often either, “ Good morning or hi, oh you know me, same old same old” or “ah same shit different day” or “what a braw day, how are you keeping?”.

I am not being ignorant with this reply’s, but the last thing I want to do is reply with something like; 

“oh hi Zoe (I don’t know a Zoe), well it’s like this, I had a terrible sleep last night, I was up at the toilet several times and I must have seen every hour on the clock”

or;

“I’m feeling really shite today, my spine is in agony, all the areas where I have had surgery is also giving me grief”. But I don’t, I just want to downplay it and then get on with what I am doing.

So that’s the routine with my medical appointments. It’s a routine that can have different effects on my body and mind. I would be a lier if I turned around and said that these appointments didn’t bother me, of course, they do, after all I am human, just like you.

ONCOLOGY.

On Wednesday 4th March 2020 I was at the Western General Hospital (DCN Unit) Edinburgh for my now yearly appointment with my oncologist. It was only a matter of 10 or 12 days before that I was at the Queen Margaret Hospital in Dunfermline for the MRI scan.

The appointment/s that I have with the oncologist is the ones that I like to have someone with me. This is due to the type of news that you can hear at these appointments. Kirsty usually comes along with me to these, however, Theresa my sister accompanied me.

The oncologist that I usually see is currently on holiday and I met with Mr Grant. As Mr Grant came out of his office and shouted out my name and when I went to introduce myself to him, I automatically put out my hand to shake his. 

I then sensed a bit awark-ness as he told me that he would usually have no problem shaking my hand. However, due to coronavirus (COVID-19) he told me that guidance includes not to shake hands when meeting someone.

I met him years ago, however, he was fully aware of my background due to the numerous health service internal case conferences that my case has been discussed at.

We discussed my latest results from the MRI scan I had and I was delighted when I was told that there is “nothing to worry about”. These appointments usually last 20 minutes, however, it lasted a wee bit longer. It was a really good appointment as there were issues that we discussed that haven’t been addressed for quite a while.

OTHER APPOINTMENTS

I was recently at an appointment with an optician as I haven’t been for one for several years now. When going through this appointment I was really encouraged when the optician said that I had ‘excellent eyesight’. However, when it comes to looking at things in the distance, I need glasses for making out the finer details. So I will have to get into a habit of wearing these for watching TV, gaming, movies, football etc.

I have also been getting on with the preparation work for Prog in the Park 2.0 Scotland’s Indoor Prog Rock Festival in aid of Cancer Charities and that is going well. There are regular updates on the PITP 2.0 social media sites and also at proginthepark.com

Tickets are £25.00 which is great value and you can get them from the website. If you would like to sponsor PITP 2.0 or make either a donation or donation or provide a prize for either the raffle or auction, then please contact me at:

proginthepark2.0@gmail.com

THE PROGRESSIVE UNDERGROUND

Thanks to Kev Rowland for the kind donation of this amazing piece of artwork to promote; The Progressive Underground vols 1 and 2. Volume 3 to be released later.

Click on the link below and check out this remarkable story of how it has travelled from Canada 🇨🇦 to New Zealand 🇳🇿to Inverkeithing Fife Scotland 🏴󠁧󠁢󠁳󠁣󠁴󠁿

This will be getting auctioned off at Prog in the Park 2.0 Scotland’s Indoor Prog Rock Festival in aid of cancer charities.

To take part in the auction and watch all the live bands then get your PITP 2.0 ticket from proginthepark.com

I am so lucky to able to model this amazing piece of artwork.

DOUGLAS CHAPMAN MP POPS IN TO SUPPORT PROG IN THE PARK 2.0

PROG IN THE PARK 2.0

I was absolutely delighted when Douglas Chapman MP came to see me on Thursday lunchtime for 5 minutes while he was out campaigning. Anytime I see Douglas or text him or message him, vice versa, he always asks about my health.

Douglas had asked me how the preparations for Prog in the Park 2.0 were coming along. When talking about it I was really pleased when he suggested I go to see him in the new year at his office to discuss supporting PITP 2.0 just like he supported PITP earlier this year.

Douglas also kindly agreed to have his photo taken with me to highlight PITP.

Remember, you can get your tickets at

proginthepark.com

and just follow the link for tickets. The price of PITP 2.0 tickets is £25.00.

Why not buy a ticket as a Christmas present for the prog lover in your life.

Best wishes

Kevin O’Neil

ST ANDREW’S DAY

Where ever you are in the world 🌎today, I hope that you and your family have a wonderful St Andrew’s Day today. 🏴󠁧󠁢󠁳󠁣󠁴󠁿

The St Andrew’s Cross or Saltire is our national flag. Tradition has it that the flag, the oldest flag in Europe and the Commonwealth, originated in a battle fought in the East Lothian area in the Dark Ages.

St Andrew’s Day marks the start of Scotland’s glittering Winter Festivals, which includes other seasonal highlights of Hogmanay and Burns Night.

So please have a wonderful St Andrew’s Day.

All the best, Kevin.

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ALL ABOARD

I recorded a programme last night (Friday 8 November 19) that was on 5 HD – New World’ Most Scenic Railway Journeys, I must admit it’s not the type of programme I would usually watch. It caught my eye when reading the description for it. I noticed that it was about the TranzAlpine Express on New Zealand’s South Island, from Greymouth to Christchurch.

It was when I was going through the channels looking for something to watch when I noticed this programme was coming on. I decided to record it as I was going to be watching Spiderman Far From Home with Kirsty.

I ended up watching this programme at 06.30 this morning and it was like taking a trip down memory lane. When watching it I couldn’t stop thinking about being on that train journey and what a right memorable trip it was. This was on my second last day on an eight-day charity trip to New Zealand.

In November 2003, I was fortunate to go on the TranzAlpine Express when I was across in New Zealand with 47 other hardy Scots for a charity cycle ride for the then Scottish Society for Autism – now Scottish Autism.

So including travelling, it was a 12-day trip. The jet lag really hit me on the way back home, but it was worth it. I really did love the whole event and I met some great people. A couple of the guys were staying on for another few weeks. They had asked me to go along with them, but I couldn’t as I had started my employment with UNISON only 2 weeks before going on this trip.

To take part in the ride you had to raise £3000, £1500 was to pay for flights and accommodation. The other £1500 was straight towards raising awareness and funds for the charity. I total I raised roughly £6000. The route for the cycle ride route itself was:

Day 1       Picton to Blenheim via Marlborough Wine Valley

Day 2.      Blenheim to St Arnaud (Alpine Lodge Nelson Lakes National Park) 

Day 3       St Arnaud to Murchison

Day 4       Murchison to Westpoint

Day 5       Westpoint to Punakaiki

Day 6       Punakaiki to Greymouth

Travelling to New Zealand and coming back home the flights were; 

Going from Edinburgh Scotland – London Heathrow England – Los Angeles LAX USA – Auckland New Zealand – Wellington New Zealand. 

The return trip was from; – Christchurch New Zealand – Auckland New Zealand – Los Angeles LAX – London Heathrow England – Edinburgh Scotland.

There were a few reasons why I took part in this. I first came across an advert on the TV for this challenge. I can always remember sitting watching the TV with Kirsty when the advert came on and then saying, “I quite fancy doing that Kirsty!” and her response was, “with the people you know you can raise the money easily”. When I saw that I had to raise a minimum of £3000 I really did doubt myself that I would be able to raise this amount of money.

It was Kirsty who really encouraged me to register and then take part in the challenge. At the time I was the Scottish Political Officer for the Communications Workers Union (CWU) and I was constantly meeting with Members of the Scottish Parliament (MSPs) in Edinburgh and Member’s of Parliament (MP) in London. I had a really good working relationship with different branches of my own trade union the CWU and a good relationship with other trade unions.

So the next day after seeing the advert I called the charity and they gave me a complete breakdown on what I would need to do to register etc. Then a fundraising pact was sent out. I then started writing directly to politicians and trade union branches for donations and the response really was fantastic.

When Tommy Sheridan was an MSP, he wrote a weekly article for one of the tabloid newspapers. Tommy would use his fee from the newspaper and he would give the money too ‘good causes’ and to the charities that members of the general public that wrote to him asking for a donation. Tommy also would write about this in his newspaper article. So Tommy sent me a cheque for £150 and he wrote about my fundraising efforts.

The advert was on the TV roughly in late December 2002 and I was really feeling down at the time. In November 2002, my mum had died after a long battle with a brain tumour. So after discussing the event with Kirsty, I had decided to do it in memory of my mum. 

I have taken part in and organised many charity events in the past, however, this was my first major charity event and the one that got me hooked on doing many more and then going on to organising charitable events.

With the events that I have taken part in and organised in the past, I have helped raise a lot of money and awareness for many charities. So with the way my health is now, there is no way that I could even consider taking part in physical events. However, I really do enjoy what I do with Prog in the Park raising money and awareness for cancer charities. MacMillan Cancer Support is the beneficiary of PITP 2.0 

So if you have still to buy your Prog in the Park 2.0 ticket you will be able to buy that from proginthepark.com .

Watch out for a charity challenge that is going to coincide with PITP 2.0 and hopefully you might even want to take part in this. Details will be published very soon.

If you have never done one of these charity trips that you see on TV, newspapers, magazines, online etc and fancy doing it yourself for whatever reason, then do it. I am more than happy to discuss my involvement in these type of events if you would like more information.

Everyone has their own reasons for taking part in charitable events and most do it for the right reasons. It is unfortunate that some people do it for their egotistical reasons, don’t let them put you off. Always think about the difference you can make when doing something like this.

 

 

All the best

Kev.

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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