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

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THE PROGRESSIVE UNDERGROUND We are so lucky to have this auction prize of this amazing artwork for Kev Rowland’s The Progressive Underground Vols 1,2&3 . When I explained to Kev that I was looking for donations for PITP 2.0, I was informed that this is only one of four of these in the world. This travelled from the artists Martin Springett from Canada🇨🇦to @New Zealand 🇳🇿then finally to here Inverkeithing Fife Scotland 🏴󠁧󠁢󠁳󠁣󠁴󠁿 The Progressive Underground Vol 1 and Vol 2 is available to buy from Amazon.co.uk. The only way that you can take Park in the auction at Prog in the Park 2.0, get your tickets from proginthepark.com and they cost £25 Thank you so much Kevin.

A post shared by Prog in the Park 2.0 (@prog_in_the_park_2.0) on

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.

saltire.jpg

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

PAM – Pain Awareness Month – September

I’m Tired

I have been living with chronic pain for roughly 13 years now and I had no idea that September is Pain Awareness Month. I have had surgery on my spine twice and once on my chest that has removed tumours that have been classed as Sarcomas and that July was Sarcoma Awareness Month.

Earlier today I came across a really great blog about pain. This is by someone like myself that is living every day in chronic pain. Had I known or even realised a wee bit earlier, rather than finding out on 21/09/10 that it’s Pain Awareness Month, then I could have done something about it. However, I still can and will do some campaigning.

If you have about 5 minutes or so spare, then please click on;

https://wordpress.com/read/blogs/132734583/posts/9117

Comments

How many times do we think to ourselves that we are going to reply to that. Then we think, yeah I will but I will do it later as I have something to watch etc. Then later comes and we’ve forgotten all about it and what we were going to do.

That’s happened to me many times before, so rather than think about it I sat and wrote my comments about this blog and here they are;

Thank you Alysaa for this blog. I’ve been living with chronic pain for roughly 13 years now, yet I had no idea about Pain Awareness Month. Like so many men and women, I am in pain 24/7 and you get so so tired of it. Here are a few examples of how tired I can get:

Tired of living in pain.

Tired of taking so many medications.

Tired of the side effects of some medications.

Tired of speaking to medical professionals about it.

Tired of trying numerous medications.

Tired of it taking over my life and missing out in so many things with family and friends etc.

Tired of so many issues that affect everyone and our families.

Sick and tired of many people that say “oh hi Kev, you’re looking well, looking good etc”, especially when some people have no idea of how we are feeling in the inside!

Take care Alyssa and best wishes from Scotland 

Alyssa blogs as: Fightmsdaily

WOULD YOU LIKE TO OWN A SIGNED GUITAR BY A “ROCK AND ROLL HALL OF FAME(R) AND PROG ROCK LEGEND?”

A PROG IN THE PARK 2.0 UPDATE

If you were at the inaugural Prog in the Park (PITP) in April 2019, you may recall that there was so many great raffle and auction prizes. So many people had contacted myself and Brian, asking us “so how can I win that prize?” Etc.

When answering this question, in writing and verbally, I felt like a ‘controlled politician’. You see myself and Brian both had agreed that the only way that you can win any prize was quite simple, you had to be at PITP and either buy a ticket(s) for the raffle or take part in the raffle.

Thanks to Marillion manager Lucy Jordache, we auctioned off a guitar  that was signed by the band. This raised a fair amount of money and the winner(s) of the auction were delighted with the winning this amazing prize.

The Fish era tribute band StillMarillion were the headliners of PITP, so this prize was well sought after. Here’s hoping that this signed guitar raises even more money than what the first one did.

Getting decent prizes to sell and raise funds for the cancer charity’s has become as almost  a challenge in its self. Our PITP ‘tech guy’ Andrew McDonald sourced the guitars and he has also suggested if Marillion were able to sign it, so I got it sorted out. Andrew also has suggested Steve Hackett to sign the guitar being auctioned at: PROG IN THE PARK 2.0

I really am grateful to Andrew for sourcing the guitars, also grateful to Marillion and Steve Hackett signing these. 

A massive thank you goes out to Alan Reed for asking Steve to do this for us and for being a genuine decent guy. So please come along 

ALL I CAN TELL YOU

Several months ago, I received an email from a new health website called; allicantellyou.comThe people behind this website were aware of my rare cancer story and my determination to raise awareness of Malignant Myopericytoma. They were also aware that this is an extremely rare type of cancer and how rare it actually is.

The sender of the email asked me if it would be possible if I could send them roughly 1500 words about the cancer and my One of Fifteen social media campaign. I was delighted that they had got in touch with me and I replied back to them almost instantly.

In my reply, I asked them what the deadline date was and that I would actually struggle to be able to fully tell my story in 1500 words. I stated that it could take up to something like 2000 words to give a full account.

Before going to Turkey on holiday with my family in July, I emailed my article back to them along with several photos of myself during the period that the tumour was growing. I also included some photographs from the operation and the massive tumour the surgical team removed.

You will be able to find this article at:

https://www.allicantellyou.com/articles/my-cancer-was-so-rare-only-15-people-in-the-world-have-had-it

LIVE FROM PROG IN THE PARK – SATURDAY 6 APRIL 19

I was fortunate that a friend of the family was at Prog in the Park to film Afterglow. John is the brother-in-law of Afterglow singer Peter McDonagh and I have known him and his family for roughly 40 years now.

I am so grateful that John was able to capture on video sets from; Altres; Afterglow; Alan Reed and the Daughters of Expediency and StillMarillion. Unfortunately he was unable to film Noddy’s Puncture as he had to eat. John did manage to capture Peter and Alan doing a great acoustic version of Peter Gabriel’sBiko from the ‘wee stage’. 

Due to the size of the files, some of the bands sets are on either two of three videos lasting between 30 to 40 odd minutes. I have started to put all the sets onto the Prog in the Park YouTube page. 

So first up on YouTube from the LIVE FROM THE PROG IN THE PARK series is – StillMarillion (Part 1) that was added roughly a week ago.

Then from what I am calling – the Live from the Prog in the Park series is –  StillMarillion (Part 2)

You will also be able to find – Live from Prog in the Park – StillMarillion (Part 3)

You will also find: – Live from Prog in the Park – Alan Reed and Peter McDonagh – Biko

The sets from Altres; Afterglow and Alan Reed and the Daughters of Expediency are also on the Prog in the Park YouTube page. However, I will be amending these, sometime.

ONE OF FIFTEEN AND SOCIAL MEDIA SITES

This is just a wee reminder on where you can find the One of Fifteen campaign.

Website: – oneoffifteen.com

Facebook: – https://www.facebook.com/oneoffifteen15/

Twitter: – @oneoffifteen15

Instagram: – one_of_fifteen

Once again, thank you for following this website and also my social media accounts. Please ask your social media ‘pals’ to also follow these accounts. You see the more people I have following then the more likely I am to find more people with Malignant Myopericytoma .

Until the next time,

Kevin O’Neil 

oneoffifteen.com

AND THE BEAT GOES ON

The Summer 19 edition of Connect, the quarterly magazine from rare cancer charity Sarcoma UK is now on their website. 

Click to access connect_-_july_2019_-_web_version.pdf

Meet the Fundraisers is a feature on pages 3 and 4 about 5 different stories and how volunteer fundraisers have given up their free time to raise awareness and much needed funds for the charity. And The Beat Goes On is the short story about Prog in the Park and how I am one of fifteen people world wide with Malignant Myopericytoma.

This article also mentions that just sort of £3400 was raised for Maggie’s Centres and Sarcoma UK.

I have recently contacted Sarcoma UK to find out when their Podcast about my rare cancer and Prog in the Park will finally be on air. Enda, the Digital Communications Manager for Sarcoma UK had interviewed myself and several other people at Prog in the Park and it should make an interesting listen.

THANK YOU

Over the last few weeks I have had several ‘friend’ requests via Facebook. I have also had a lot of new ‘likes’ on my One of Fifteen and Prog in the Park pages. On my Twitter accounts I have had several people ‘following me’ for the first time and its the same with my Instagram account. 

So I would like to take this opportunity to thank every one that has recently started to follow me. I would also like to thank everyone that has been with me on these accounts for ages.

Over the next few days, I will be posting live footage off; Altres, Afterglow, Alan Reed and the Daughters of Expediency and StillMarillion on the One of Fifteen YouTube account. A massive thanks to lifelong family friend John for filming these.

SOCIAL MEDIA

Here’s a quick reminder of where you will find One of Fifteen and Prog in the Park social media accounts.

  • ONE OF FIFTEEN
  • PROG IN THE PARK

Once again, thank you for following me on my various social media accounts. Please share these with your friends and ask them too ‘like’ and ‘follow’. 

Whatever you are doing, please enjoy the rest of your day.

Best wishes

Kevin

SARCOMA UK ARTICLE ON PROG IN THE PARK

It must have been not long after 03.15 on Saturday morning when we all got back from Edinburgh Airport after a great family holiday in Lara Beach Antalya Turkey  🇹🇷 

Once we got home, it was a matter of putting Nathan to bed and then checking the mail that had been delivered over the time we were away. Myself and Kirsty were both knackered, however, we both couldn’t sleep. So I thought that was an ideal time to check the mail.

When opening and going through the mail, I was delighted to see that Sarcoma UK had sent me the Summer 19 Edition of Connect. I was even more delighted to see that in a two page spread called Meet the Fundraisers, a photograph of me and an article on Prog in the Park is in this edition.

I have attached the article for you and once the digital copy of this is ready, then I will also let you know. My intention was to put this article on oneoffifteen.com and my various social media accounts a few days ago, however, a few things cropped up. Better late than never, I suppose.

All the best.

Kevin

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