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;
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!
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
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.
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’s – Biko 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.
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 .
The Summer 19 edition of Connect, the quarterly magazine from rare cancer charity Sarcoma UK is now on their website.
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.
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.
Here’s a quick reminder of where you will find One of Fifteen and Prog in the Park social media accounts.
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.
THE LAST WORD…..I have attached my article that appeared in today’s edition of The National. This features the recent #sarcomaawarenessweek #rare #cancer #malignantmyopericytoma.
I would be so grateful if you would please share this with your Facebook ‘friends’. Sarcoma awareness week is also about highlighting this rare group of cancer’s to our countries policy makers and those that take decisions on health. Please help me, other people with sarcomas and sarcoma campaigners get this on politicians radar and agenda.
I know that it’s been a while since I have last updated this page, but I have had a lot going on with my heath issues and normal day to day life pressures.
There has also been a lot medical appointments that I have had recently, including my 12 weekly botox injections into what’s left of my right shoulder blade. These appointments are at the Victoria Hospital Kirkcaldy and these are the quickest medical appointments that I go to.
It’s usually involves exchanging pleasantries with the consultant, taking off my shirt etc, then getting the injections and then put my shirt back on. I have taken longer in the past to book another appointment.
PROG IN THE PARK 2.0 ANNOUNCEMENT
I am delighted to announce that Ali Ferguson is now on the bill for PROG IN THE PARK 2.0. Ali will be appearing with his band on the day.
Ali is well known within the Prog Rock scene. Why don’t you check out Ali’s Facebook Page at:
Prog in the Park Christmas Competion Winner Fiona Stacy writes about her day at Prog in the Park on Saturday 6th April 2019 at the Glen Pavillion Pittencrieff Park Dunfermline Fife.
‘I don’t usually win things’ is what a lot of people say, and I am no exception, but I won the Prog in the Park competition so was listed as a VIP guest. I was thrilled by this, mainly because it guaranteed front row seats, a boon when you are only 5’1”. The prize was for two, so great that my friend Lizzie, could share in the benefits.
There was initial disappointment that SeYes were no longer playing but this was more than made up for by the prospect of seeing Noddy’s Puncture.
We arrived in Dunfermline on the preceding afternoon and checked into our accommodation very close to Pittencrief Park, then we ‘hit the town’. A compact, historic place where we visited the Abbey Church, the last resting place of Robert the Bruce minus his heart, and the local museum which has some interesting artefacts. Curiosity satisfied we prepared to head out for the evening and later chasséd down to PJ Molloys to catch the last hour of Rush tribute band Clockwork Angels. Not being a Rush fan, I can’t comment much on what was happening, but the audience were fairly rocking when we arrived. There were plenty of air guitar and drums going on (couldn’t help thinking of Alan Partridge) and it was a great way to get into the mood for the day ahead.
The Glen Pavilion is an easy walk into Pittencrief Park, and I’m pleased to say the red carpet was waiting for us when we arrived. Gold wristbands at the ready we set off to explore and find our other Prog buddies.
It was lovely to find our seats with our names on, which was a great touch, and we knew no one was going to steal them. Brian did warn us it might be a bit loud down at the front of the stage but it didn’t seem to cause us a problem at all.
Fortunately we had taken our seat as the event started without warning, first up were Altres who, sadly, weren’t introduced. They were the only original band of the day and were an excellent way to start. Their music was much more ambient than I was expecting so gave time for our dentures to bed in before the thrashing drummers arrived. A mixture of Kraut Rock, techno with a dash of post-industrial gloom, apt for a rainy Saturday in Dunfermline. It was thoroughly enjoyable being one of the highlights of the day for me, foot tapping along with hypnotic rhythms and quirky infills. If they are to return to Prog 2.0 I would be pleased to see them higher up the bill, as folk were still arriving as they took to the stage. I think people would be sorry to have missed them. It was a pleasure to chat to the guys after the set and I even splashed out on a CD.
With our prize came access to the green room with the promise of photographs with the bands. This didn’t work out probably for logistical reasons, but it didn’t matter as most of the band members mingled with us all during the day and were more than happy to chat.
Next up were ‘Afterglow’ covering the Phil Collins lead singing era of Genesis. Excellent musicianship and performance especially from bass and drums, the keyboards were a bit far back in the mix so hard to pick out at those ‘crucial’ moments. They were joined on stage by an enthusiastic Alan Reed for their rendition of Squonk. It was a good mixed set with a lot of the favourites of that era.
During the break to set up for Noddy’s Puncture, Ed Blaney took to the ‘Wee Stage’ for a wonderful Bowie acoustic set. I have seen Ed before with his Bowie tribute band Ultimate Bowie, they are superb so catch them if you can. He is such a talented musician as he went on to prove further as part of the ELP tribute Noddy’s Puncture. Taking over the guitar and vocals Ed’s renditions of our favourite ELP tracks were fantastic. Frank Askew was tremendous on percussion and the seemingly unflappable Tom Szakaly on keyboards. We chatted to Frank during the previous set break and he explained that he lived on the South coast, Ed is from the North East of England and Tom lives in West Yorkshire, so rehearsals are quite tricky. You would never know it to hear them, and watching Tom wrestling those keyboards about the stage was an awesome sight. It was so exciting to see the vintage machines soar with notes. Yes, there were a few glitches but that just added to the jeopardy and got the audience behind Tom and roaring for more! To top it off he stole the show with a custom ‘ribbon controller’ complete with pyrotechnics which he proceeded to play with an unusual part of his anatomy. One might be forgiven in thinking it was a ‘G’ string, if you know what I mean. A superb dose of nostalgia, what a showman!
Next up was Alan Reed and the Daughters of Expediency. I’m not familiar with Alan’s work but an interesting full on Prog performance was provided by him and his superb band.
I didn’t see all of the acoustics sets on the ‘Wee stage’ as it was such a packed programme and I wanted to catch up with friends, have a drink and sample the fayre that was on offer. Apparently, the Guinness ran out quickly which was unfortunate for some.
There were interesting stalls of artwork, books, CDs and Vinyl for sale.
A silent auction needed attention as did a survey of the raffle prizes. There was plenty to keep you occupied, all raising funds for two wonderful charities Maggie’s Centres and Sarcoma UK.
Additions to the audience seemed to pour in just prior to the Stillmarillion set, the headline act. I heard they went down an absolute storm but I’m afraid to say once the raffle and auction were finished Lizzie and I were all Progged out. Starving we bid a hasty retreat to the Glen Tavern for fodder. I know they were a huge highlight for many on the day but never having been a Marillion fan I’m afraid they had to be sacrificed for nourishment.
I would like to pass on my hearty congratulations to Kevin and Brian for a wonderful event and ‘cheers!’ to more of where that came from.
We really enjoyed performing at the inaugural “Prog in the Park” festival in Dunfermline, at the beginning of April. A lovely venue, lots of great bands, and an enthusiastic audience. As well as perorming our set, I also managed to guest on ‘Squonk’ with Genesis tribute, Afterglow, sneaked in a quick acoustic verison of‘Biko’ on the acoustic stage, and was invited to sing ‘Script for A Jester’s Tear’ with headliners, Stilmarillion. I aim to offer value for money 🙂
Click on the link to watch Alan and Pete singing Biko.
It’s been a while since I have updated this site and please excuse me for this. What happened was straight after the successful Prog in the Park (PITP) indoor Prog Rock festival, I celebrated my 50th birthday 2 days later. Then I was down in Manchester for a MacMillan Cancer Support conference.
Then the next week it was a matter of sending the cheques for the money raised to the charities. The money raised came to £3,380.84. So Maggie’s Centre’s and Sarcoma UK both received a cheque for the value of £1,690.82. Thank you everyone who was there for helping us raise that total.
Both these charities mean quite a bit to me. The charity Maggie’s, has been good to myself and Kirsty. It was in January – February 2012 when I had my first set of 30 radiotherapy treatments at The Edinburgh Cancer Centre Western General Hospital. Then in January – February 2016, I had the second course of 30 radiotherapy treatments. Again at The Edinburgh Cancer Centre Western General Hospital and Maggie’s, was there for me. The advice I received from the charity was excellent.
Then later in 2016, I was an inpatient at the Victoria Hospice Victoria Hospital Kirkcaldy, on two separate occasions. The first time for 17 nights and the second time for 14 nights. There would be times that I would drop in at Maggie’s Fife for a coffee and read of the newspapers.
I found out in November 2015 that the ‘tumour from hell” was Malignant Myopericytoma and the tumour is in the sarcoma group of cancers. So these two charities were chosen to raise much needed funds and awareness. One of Sarcoma UK’s staff, Enda came up from London to be at Prog in the Park. Enda spent a lot of time at PITP interviewing myself, Kirsty, some mates and some band members for a podcast about how I have been coping. This podcast will be ready in early June. I will of course post a link for it.
The Sailor and the Mermaid
Joe Cairney is the vocalist with Scottish Progressive Rock bands; Comedy of Errors and Grand Tour.
Joe had a 30 year career with Scottish Fire and Rescue Service and he was a Watch Commander. Now doing his bit the great cause; The Firefighters Charity, Joe and Friends have released the track The Sailor and the Mermaid.
I was made aware of the great work by The Firefighters Charity when I was still working as an Area Organiser for UNISON Scotland. Before taking ill health retirement, I spent some time working with The Scottish Fire and Rescue Service (SFRS) UNISON Branch.
What struck me with this charity was how all grades working for SFRS were committed to The Firefighters Charity. I can always remember asking a member based in Inverness when I asked her and her colleagues,“so what are you doing at the weekend then?”. Some said they were working, some said going out and one young woman said very casually, “I’m doing a parachute jump on Sunday for The Firefighters Charity”.
The Sailor and the Mermaid was written by Michel St-Pere from Canadian band Mystery and was from their album “Beneath The Veil Of Winters Face”. Joe say’s “I chose to record this track using various musician friends from all over the world as I love it and it’s my all time favourite song”.
Joe goes onto saying, I’m raising money for the Firefighters Charity as it’s a something very close to my heart. I was in the fire service for nearly thirty years and the only source of income they get is through charitable donations from firefighters.” “Every single penny raised will go to the charity as there are no overheads except for the cut that Bandcamp take for making the track available for download.”
Joe finishes by saying, “I hope you enjoy my version of this great track and that you will send the link to many friends so we can raise as much money as possible for the Firefighters Charity.”
“Many thanks again for your purchase,” Joe.
I bought my copy of The Sailor and the Mermaid on Friday when I first came across it. Please help Joe raise funds so the excellent work carried out by The Firefighters Charity can continue. The money raised by this charity mostly comes from firefighting staff across the UK, they receive no funds or grants. So please help Joe by downloading this song it at:
The developmental stages for next years Prog in the Park (PITP) are at an advanced stage. So far the date has been set, the venue has been booked, the PA is booked and one band has already been announced on the social media sites. Rush tribute band, Clockwork Angels will be playing a 2 hour set of songs from the bands impressive 40 years career.
Next years event is called: Prog in the Park 2.0 and it is on Saturday 4th April 2020. Once again, the venue is The Glen Pavilion Pittencrieff Park Dunfermline KY12 8HQ and it starts at 11:00 and finishes around 23:00. PITP 2.0 is in aid of MacMillan Cancer Support. This is a charity that myself and my family have had support from in the past and I appreciated the level of support they gave me.
I am delighted to announce that The Scottish Pink Floyd have agreed to be on the bill for PITP 2.0. The Glasgow based Scottish Pink Floyd are an 9-piece band covering all eras of floyd and are dedicated to perfecting their sound with each and every show. Celebrating the music of Pink Floyd in a way that will satisfy even the die hard fans.
I will be announcing at the end of this week our first original band that has been booked. The ‘wee stage’ is also making a return and Prog artist, the talented Charlie Roy is also returning. I have also been asked to look for a trader that you usually find at record fayres etc. I will of course keep you all updated on that.
Social media played a big part on the promotion of PITP, so I have set up the following social media sites to keep everyone updated with whats happening etc:
Facebook: Prog in the Park 2.0
YouTube: Prog in the Park 2.0
I am also working on a web site and I will let you all know when this will go live. Please keep checking for regular updates on either: PITP 20 or One of Fifteen
Thank you so much to everyone that bought a ticket for Prog in the Park, bought raffle tickets on the day or had a winning bid in the auction. Thank you also to the people and organisations that made a donation.
Your generosity means that we managed to raise £3,380.84 that is split between Sarcoma UK and Maggie’s Centre’s.
I have told the charities to expect a cheque for the value of £1690.42 each.
Once again, thank you so much for everything.
Please look out for me posting the details about next year’s Prog in the Park, quite soon.