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THE NATIONAL

THE NATIONAL

Yesterday was a normal Sunday in the O’Neil household. We didn’t have anything planned or any reason to go out, so we let Nathan play with his Nintendo Switch for quite a while. The Nintendo Switch was part of Nathan’s Christmas and he really enjoys playing with it. 

I enjoy gaming myself, I have been into gaming since I was a wee boy and I can always remember my old Atari set that used to plug into the back of the telly. It really was great and I had hours of fun all those years ago with it. To this very day, I still love playing video games on my PS4 and VR Headset. Technology in most aspects of life really has changed a lot. Can you imagine if you could go back to the 70’s with our kids, they just wouldn’t be able to comprehend what it was really like back then and what the technology was like.

Regardless of what I do daily, I am finding that I am feeling more and more tired. So yesterday afternoon, I had to rest due to me feeling really tired. I managed to catch some sleep and when I woke up, like most days I grabbed my phone to check emails , etc.

One email I received was from Kirsteen Paterson, a journalist from The National newspaper. In her email Kirsteen explained that she was wanting to talk to me that afternoon if possible as she was writing an article to appear in todays edition about my health, One of Fifteen campaign and my involvement with Prog in the Park.

So up I got, sent Kirsteen a message and 10 minutes later I was on the phone talking to her. The telephone interview lasted roughly 30 minutes and I really did like her style with the questions she asked me. I have lost count now how many times I have been interviewed, but this interview I found that this was a journalist that really looked into another side of this rare cancer and how it effects me and my family. Then as the telephone interview and call was coming to an end, Kirsteen has asked me if it would be ok to use a photograph of myself, Kirsty and Nathan that she saw on oneoffifteen.com 

Later that afternoon, Kirsteen sent me a message to say that the article was written up and that it would be in The National today (28/01/19).

BOTOX

Every 12 weeks I go to the Victoria Hospital in Kirkcaldy for Botox injections into my right shoulder. These injections are right into the area of shoulder blade that was removed during the life saving surgery in October 2015. The idea is that these injections will relieve pain in the area where I suffer from chronic pain (right shoulder area only). 

I was explaining to the specialist I see that I might get a few weeks relief from these injections,and that a few weeks pain relief is better than none. These injections really don’t take too long, I would say that I was probably in this appointment for less than 10 minutes. Basically it was a matter of ‘hello how are you doing and how has the pain been?’ Then a matter of taking my jacket and shirt off, the two injections and then my shirt and jacket back on. After that, the doctor checked her calendar and gave me a note for me to take back to the outpatients reception so I can make another appointment. These appointments really are that quick with a really good specialist.

Just before my appointment was due, I had some time to nip into the Kirkcaldy Maggie’s Centre at the Victoria Hospital. I spent about roughly around 20 minutes talking to Louise, one of the centre’s fundraisers about the forthcoming Prog in the Park gig. Every time I have walked through the centre’s door I have always been made to feel welcome and I have always felt welcome.

Just before going into the hospital I had time to check all the notifications from Facebook I had on my phone. What had happened was that Kirsty had noticed that my mate Kenny had posted the article about me in today’s edition of The National. Then Kirsty had tagged me and posted the link, so I have attached the link for you if you want to read it.

https://www.thenational.scot/news/17388740.scot-with-rare-cancer-finds-fellow-sufferers-after-global-search/

Kev Kirsty Nathan

I have also attached the link for my latest Vlog for you as well.

https://youtu.be/wfuj9SAmeiY

Please do watch the Vlog about the interview yesterday, the botox injections I had today, but also, how many people in the world have malignant myopericytoma.

Once again, thank you so much for continuing to ‘follow’ me, ‘like,’ ‘share,’ ‘retweet’ etc, it really does mean a lot to me.

Kevin

Featured

One of Fifteen – an introduction 

Hi, my name is Kevin O’Neil, I am 50 years old now and I live in a small town Inverkeithing, Fife, Scotland. This is home for me and my wife Kirsty and our 6 years old son Nathan.

I never thought that I would ever write a Blog, after all what would I write about? But as fate would have it, I’ve found something to finally write about; cancer’. But this Blog is also about severe chronic pain and living with it for the last 11 years, plus…

Now, I am 1 of only 15 people worldwide diagnosed with the rare form of cancer called malignant myopericytoma (#malignantmyopericytoma). The tumour originally started on the wall of my chest on the right hand side.


These photos were taken in late September 2015, roughly about a week before life threatening/saving & changing surgery.

Carrying that about was exhausting stuff, but with surgery round the corner, I knew that I wouldn’t be exhausted again, like that. Wrong!

You see I’m exhausted most days now. This is due to the amount of medications I need to take every day, for the rest of my life. Also down to severe chronic pain making me extremely exhausted.

So in this Blog I will be writing about these areas.

Thank you so much for liking and following this Blog . I will be making regular updates so please keep checking in too see what I have to say. But I also want to hear what you have to say, wherever you are on our beautiful planet. Don’t be shy, I don’t bite. Lol

Finally, please ask your family, friends, workmates and anyone else you can think of to like and follow the page.

Hopefully this can help me track down the #14others that have/had this rare type form of #cancer #malignantmyopericytoma

The Last Domino…..

Needing to rest.

I’m ‘resting’ in my bedroom with my AirPod Max on while blasting out the Genesis – The Last Domino? compilation album. I am going to see them with Kirsty at The Hydro in Glasgow in a couple of weeks, so I thought that I would ‘familiarise’ myself with them again. As if I really need to!

Despite what everyone is saying about Phil Collins and the situation with his health, his son on drums, having backing singers etc, I am still looking forward to seeing them play live one more last time. This is a band that I have loved for many years now and when I bought the tickets I knew that this would be my last Genesis gig. I watched the documentary about this forthcoming Genesis tour and yes I ‘feel’ for Phil Collins and his health battles, but with his son on the drums and the guys on backing singing duties, this will be some farewell by them.

I’ve been resting for quite a bit over the last four to five weeks. This is due to the recent surgery that I had on 18th August 21 at the Royal Infirmary Edinburgh. Once again, recovery and care was on Ward 102 and all of the staff were great with me. This is from my consultant surgeon Mr Will (Malcolm) and his team and Caroline And Elidh and the nursing staff they lead 24/7 365. Not forgetting all the cleaning and cooking staff that would often say a casual hello etc….

I am, and have, had to rest so much due to having a ‘vac pump’ fitted to the surgical wound. I have to have this on all the time (apart from shower time) as it is basically sucking all the ‘infection’ out of me, while also helping to close the wound.

I have been going about with the ‘vac pump’ since surgery and I most likely have to take this with me when I go to gigs like Genesis in October and Marillion in November. Is it a hardship having to go about with this all of the time? No, but it can be a proverbial pain in the arse!

So, if you see me out and about and see a tube coming out of my body and going into something that looks like a clutch bag, then it’s ok to look and ask questions. As long as if you don’t say something like, “it looks like you are being assimilated by the Borg Kev”. My reply will be along the lines of a smile and then telling to…………. 

Remember now, resistance is futile!

Resistance is futile

SARCOMA AWARENESS MONTH 1st – 31st JULY 2021

INTRODUCTION

If you had asked me 6 years ago if I knew what a Sarcoma is, then I wouldn’t have had a clue. It wasn’t until I was diagnosed with the rare cancer, Malignant Myoperyictoma in November 2015 that I understood what Sarcoma’s are.

Sarcomas are a group of rare but devastating cancers of the soft tissue and bones. Only half of the 5,300 people diagnosed in the UK each year will survive for five years. However, not enough is being done to change this troubling statistic. 

Some issues affecting sarcoma patients across the country include late and inaccurate diagnosis, a lack of treatments, and not enough research being done in this area. 

WHAT ARE SARCOMAS ?

Sarcomas are rare cancers that develop in the muscle, bone, nerves, cartilage, tendons, blood vessels and the fatty and fibrous tissues.

They can affect almost any part of the body, on the inside or the outside.

Sarcomas commonly affect the arms, legs and trunk. They also appear in the stomach and intestines as well as behind the abdomen (retroperitoneal sarcomas) and the female reproductive system (gynaecological sarcomas).

Bone sarcomas affect less than 500 people in the UK each year, making it a very rare form of cancer. 

But not all bone cancers will be sarcomas.

Soft tissue sarcomas can affect any part of the body; they develop in supporting or connective tissue such as the muscle, nerves, fatty tissue, and blood vessels. Soft tissue sarcomas include:

GIST is a common type of sarcoma; it develops in the gastrointestinal (GI) tract, a long tube running through the body from the oesophagus (gullet) to the anus (back passage) and includes the stomach and intestines.

Gynaecological sarcomas (sometimes shortened to gynae sarcomas) occur in the female reproductive system: the uterus (womb), ovaries, vagina, vulva and fallopian tubes. You may also hear the term uterine sarcoma. They can affect women of any age.

Retroperitoneal sarcomas occur in the retroperitoneum. This is an area behind the peritoneum, the lining of the abdominal space that covers the abdominal organs. The retroperitoneum is deep in the abdomen and pelvis, behind the abdominal lining, where organs such as the major blood vessels, kidneys, pancreas and bladder are located.

Sarcoma is very rare, and much more research needs to be done to fully understand how these cancers develop and how best too diagnose and treat them.

People can survive sarcoma if their cancer is diagnosed early, when treatments can be effective and before the sarcoma has spread to other parts of the body. It is vital that patients be referred to a specialist sarcoma team as early as possible.

FACTS AND FIGURES

There are three main types of sarcoma: soft tissue sarcoma, bone sarcoma and gastrointestinal stromal tumours (GIST).

There are around 100 different sub-types of sarcoma

10 people every day are diagnosed with sarcoma in the UK

About 3,800 new cases of sarcoma are diagnosed each year in the UK which makes up approximately 1% of all cancer diagnoses

Every year 3,330 people are diagnosed with a soft tissue sarcoma (including GIST)

500 people are diagnosed with a bone sarcoma every year

In general, patients with a bone or soft tissue diagnosis tend to be younger than the majority of cancer patients. 16% of bone or soft tissue sarcomas are diagnosed in patients less than thirty years of age, compared to around 2% of all cancers. 37% of bone or soft tissue sarcoma patients are aged less than 50 years.

Sarcomas make up 15% of all childhood cancers (0-14 years) and 11% of all cancer diagnoses in teenagers and young people (15-24 years)

Here in Scotland, 350 new cases of sarcoma are diagnosed each year (200 soft tissue, 100 bone sarcoma and 50 GIST)

Information from:

https://www.awarenessdays.com/awareness-days-calendar/sarcoma-awareness-month-2021/

SARCOMA AWARENESS MONTH – JULY 2021

Sarcoma Awareness Month runs for the whole of July. The charity Sarcoma UK – https://sarcoma.org.uk is asking for your help. 

About 15 people are diagnosed with sarcoma every day in the UK. That’s about 5,300 people a year. Yet 3 out of 4 people don’t know what sarcoma is. Even among people who have heard of sarcoma, almost a third don’t know what the symptoms are.

One thing that Sarcoma UK is looking to do is create more awareness of this issue. Over the next few days, I will be writing to my Member of Parliament (MP) and my Member of the Scottish Parliament (MSP) and list MSPs to help with this.

If you want to help Sarcoma UK, then click the link at https://sarcoma.org.uk

THANK YOU WARD 112 AND WARD 102

BACK IN THE RIE

On Monday 1st March 21, I was admitted to Ward 102, the Cardio/thoracic ward at the Royal Infirmary Edinburgh (RIE).

I was in the RIE on this day for the pre-op work that I was needing for the surgery I was having the following day. The surgery that I had on Tuesday 2nd March was to remove the chest plate on the right hand side of my body. This chest plate was part of the chest rebuild I had after my right hand side of my rib cage was removed along with a massive tumour during life-threatening/life-saving surgery in October 2015.

The purpose of this recent operation was to remove this chest plate due to being infected. This infection on the chest plate was responsible for the times that I was hospitalised twice last year, and then again at the beginning of this year. 

The various pain teams I have seen over the years have told me that I have a high pain threshold. However, the pain that I was in due to the infected chest plate was, at times, horrendous. This not only effected my general health, but also the my quality of life. As I had described to my consultant surgeon recently, “it was like as if my was on hold”!

Since having this operation, I feel totally different and starting to get better. Although I have had some set backs like bringing up bile and then feeling exhausted after it. I am also having bouts of fatigue which leaves me feeling ‘exhausted’, so I have to rest. However, I was told that this is part of the recovery period.

CURIOSITY

The night before surgery I was asked to sign the consent form for it to go ahead. When I signed the form, I also ticked the box to authorise the presence of a surgical photographer to be present during my operation and take photographs for educational purposes.

When it comes around to what is happening to my body during surgery, I have always been curious to see what happens and how it all looks. It totally fascinates me to see exactly what the surgical team has done. However, despite my curiosity, I realise how important it is for the hospital to have a set of these photos, especially for training future surgeons etc.

It was a couple of days after the operation, and after the doctors morning rounds, one of the junior doctors brought round a laptop. He then let me see some of the photos from the operation, and I was amazed at the size of the chest plate. It wasn’t just the size of the chest plate that amazed me, but it was also the level of infection that was on it.

PHOTOGRAPHS AND THANK YOU

These photo’s of me were taken when I was in Ward 112, the cardio/thoracic High Dependency Unit (HDU) and also when I was on Ward 102. 

This was taken the day after surgery, Wednesday 3rd March 2021 when I was in Ward 112 (HDU).

I originally had three chest drains in me after surgery and two were removed before I was discharged. I go back to the RIE on Wednesday 31st March 21 for another follow up appointment and also for the chest drain to finally be removed.

These are the three chest drains I had in me. This taken when I was still in Ward 112 (HDU)

This is a selfie of me when I was in Room 16 on Ward 102. Even though I have been on Ward 102 in the RIE 5 times now, I’ve lost count how many times I have been in room 102.

I had asked one of the nurses to take this photo as this was the day that the dressing on the wound came off. That operation was the third time that the surgeons “went in” on that scar line. The procedure was called a ‘redo thoracotomy’.

I want to thank my consultant, Mr Malcolm Will and his surgical team for everything they did for me. Also, thank you so much to Eammon McGuire and his team on Ward 112 for all the care that they gave me when I was  in HDU straight after the operation. And also thank you to Caroline Braund and all her team on Ward 102 for everything they did for me.

Taking a selfie in the changing room at the X-Ray Department before my chest X-Ray on Friday 19th March 2021

After all the help and support from the staff on Ward 102, I was finally discharged on Wednesday 10th March 2021. Then just over a week later, I was back at the RIE on Friday 19th March 201 for a follow up appointment with the surgeons. At this appointment, I had a chest X-Ray and the surgical team were also checking the chest drain.

By the time that drain gets removed, I would have had it in me for 29 days. I will be glad to get this removed as where it is, it’s tricky to get in a decent position to relax in.

After being in hospital for a while, when you get told that you are being discharged, it’s a great feeling. It’s great to be back in your own home and being back to your own surroundings. Even though I get exhausted a lot, it really is great to be back home with Kirsty and Nathan.

ALL IS QUIET ON NEW YEARS DAY

GOOD BYE 2020

Most people that know me and that either follow me on Facebook or oneoffifteen.com will be well aware that I was admitted to hospital twice in 2020. In March I was admitted to the Victoria Hospital Kirkcaldy (VHK), this was with pneumonia and I was in for a week. This was more or less a week into the first UK wide Covid-19 lockdown.

Then on the 14th April 2020 I was admitted back into the VHK, only to be transferred at high speed to the Royal Infirmary of Edinburgh (RIE). I spend just short of nine weeks on the cardiac/thoracic ward 102. During the first two weeks period in the RIE, I was seriously ill. I had no idea at first that I had sepsis then a rare chest infection.

Once again this was during lockdown. During my time in the RIE I had missed my little boy Nathan turning seven years old and my wife Kirsty’s birthday (not my place to say how young she is).

When I was finally discharged, it felt great to get back home to my family that I couldn’t see in the flesh as no visitors were allowed into the hospital, a ruling that is still in place to this very day.

Throughout the rest of the year, even though I have chronic pain due to all the  numerous operations I have had, I felt better and stronger. I would get back to taking Nathan to school and walking back with him. Although, sometimes when I would be feeling too weak, our friend who’s daughter is in the same class as Nathan would sometimes take him, and back to school for me. Something I am really grateful for and appreciate.

I am not going to say that 2020 was all that bad as we had some good times throughout the year. Although like so many, I did miss getting on a plane and going on holiday, but hopefully I’ve plenty years in me for many more.

As Christmas was approaching I was starting to feel really unwell. It was gradually building up and I would feel it when I would be walking back from Nathan’s school with him.

A few days after Christmas I started to go downhill and feel really unwell. It was on the 29th of December that Kirsty had called my GP for a home visit. After the GP had checked me over, he told me that I had pneumonia and he prescribed an anti-biotic for me. My GP did say that I should consider going to the hospital, but with it being the festive period I didn’t want to go in.

Between myself, Kirsty and the GP we agreed to see what the anti-biotics would do. 

HOGMANAY

My close friends and family would tell you that when it would come to Christmas and New Year, if you were to ask which one I would prefer then it would be New Year. That’s changed back to Christmas, thank’s to a certain wee boy and the big kid in me!

Since the first time I went ‘first footing’ in my teens in the 80’s, through my twenties, thirties and then up until I became ill, I loved Hogmanay and New Year’s Day.

Even though I very rarely drink alcohol these days, I still like to bring in the ‘bells’ with a beer or two. Hogmanay 2020 was really the first time that Nathan wanted to stay up for the ‘bells’. However, I had over ideas due to being ill and in agony.

Kirsty had to call the GP surgery again and at 5pm the same GP that saw me only two days earlier was back at the house to see me. After he checked me over, he had no option to arrange for me to have an ambulance pick me up and take me to the VHK. He was in the house for quite a while and he explained to me that due to the time of year and the Covid-19 pandemic that I would most likely have to wait. But he explained that if I got worse then we were to call 999.

As the hours from 6pm were counting down to the New Year, and while I was in bed in agony, Nathan would shout up how long we had left of 2020. It was a good distraction for me.

At around 9pm I had a phone call from a paramedic wanting to know how I was due to the ambulance shortages due to the high volume of calls. When I told him about the pain I was in, he said that he would put me “up the list”. However, if it got a lot worse, then I was to call 999. I didn’t see the point, I just carried on with the pain.

Then at 11.20pm (ish) came the knock on the door I had been expecting. When Kirsty answered the door, it was two lovely female paramedics to take me to the VHK. The paramedics were both lovely and really funny and they made our day when they said that they hoped that when it came to around the ‘bells’ that it “would be with lovely people, and you are”.

The paramedics had spent a wee while getting me ready to take me out to the ambulance. I can remember when it was finally midnight and then 2021, I could hear the fog horns from the River Forth and the sound of many fireworks going off when I was settled in the ambulance.

HAPPY NEW YEAR

We arrived at the VHK about 12.30am and I was greeted by the nurse that would be looking after me in the Medical Assessment Unit. I managed a laugh when she told me that I was the ‘first footer’ and we wished each other a Happy New Year.

Once settled I had a chest X-ray and then a CT scan. About an hour or so when a doctor told me the results that I had not only picked up pneumonia, I had picked up a series of infections in my chest and in the area that was ‘rebuilt’. So due to those results I was transferred to the RIE.

Once again the paramedics that transferred me to the RIE were both brilliant and we had a good blether. They told me that I was to go to Ward 112, the cardiac/thoracic High Dependency Ward (HDU). Once there, I managed to have a laugh to be greeted by the senior charge nurse for the ward who I have met before. I was greeted with  “Happy New Year Kevin, so you’re back to see us again. We have got a lovely room for you”. The reason I was in a room was due to my infections in my chest and to keep me away from other patients.

After a few days in HDU, I was transferred to the main ward 102. This was my  fourth time in both these wards over the years and I have got to know a lot of the staff. 

Over the three weeks I spent in the RIE, I had nothing but a great service from all the staff that was directly in touch with me. It really does help that I have got to know them and they know my health condition. 

I was finally discharged on 20th January 2021, even though I was still in a lot of pain. However, I am gradually getting better, building up my strength and stamina.

I have got nothing but the highest respect for the staff in the RIE, the VHK, The Western General Hospital Edinburgh and the Queen Margaret Hospital in Dunfermline. After all, I have lost count how many times that the NHS have saved my life now! Myself and Kirsty reckon at least between four and five times. Something that I will always appreciate and I will continue to tell those that are prepared to listen me.

PROG IN THE PARK 2.0 – NEW DATE

I am delighted to announce that Prog in the Park 2.0 will take place on Saturday 2nd April 2022.

Thank you to those that bought tickets for the original date in April 2020 and the rescheduled date of March 21. Your ticket is fully transferable for the new date.

Tickets cost £25.00 including the booking fee and to order them you will find the link at – proginthepark.com

I will be over the coming weeks be making announcements about who will be on the bill on both The Main Stage and The Glen Stage (wee stage).Thank you all so much for your patience and understanding, I like so many others can’t wait for the return of live music.

Kevin

“SCOTLAND’S INDOOR PROG ROCK FESTIVAL IN AID OF CANCER CHARITIES – PROG IN THE PARK 2.0”

Hi everyone,

The following text below is what I have sent to everyone involved with Prog in the Park 2.0.

“SCOTLAND’S INDOOR PROG ROCK FESTIVAL IN AID OF CANCER CHARITIES – PROG IN THE PARK 2.0”

Please accept a very belated Happy New Year and all the best for you and your families over 2021. I say belated as I celebrated bringing in the ‘bells’ for the first time in my 51 yrs in the back of an ambulance outside my front door.


You see I was rushed to my local hospital, Victoria Kirkcaldy just as the bells tolled to bring in 2021. Then after an emergency x-ray then CT scan, I was then transferred to the Royal Infirmary Edinburgh (RIE). So I was in the RIE from the early hours of New Years Day (for the first year I didn’t even hear the U2 song!) until 20 January 2021, when I was finally discharged. Since being back home I have been mostly bed bound due to the high levels of chronic pain I am in, even though I have a high pain threshold!


So what’s been wrong? Once again I have an infection in my chest which has reached the area that was rebuild of my chest took place during life saving surgery in 2015. With the love of my wife Kirsty and wee boy Nathan, I am getting stronger everyday.


But enough of me, what about Prog in the Park 2.0? Well I am so sorry but due to all the Covid-19 restrictions that are currently in place here in Scotland, then there is no way that this will be going ahead in March 2021.


So what of the future of the PITP 2.0 project? Well I can assure you this, I am determined that “SCOTLAND’S INDOOR PROG ROCK FESTIVAL IN AID OF CANCER CHARITIES” project will happen sometime in the Spring of 2022.


Why 2022 and not later this year? For one, even though I have a complicated ill health condition, I need to clear this year, just in case! I am sure you can all appreciate this. I also can’t see something like this going ahead this year.


We all desperately want to see you all live and in person again and I am desperate to help that happen, with of course your continued support. Prog Rock in Scotland needs an event like this and I appreciate you working with me to see this dream of mine and others happen.


In the meantime, I hope that you and you families keep safe during this pandemic and trying times that we all are going through.


Stay safe  Stay alive


Best wishes
Kevin O’Neil

Prog in the Park 2.0

proginthepark.comkevoneil@sky.com

MERRY CHRISTMAS

Merry Christmas everyone to you and your family. I hope that where ever you are and whatever your circumstances are, that you all have a good day when it’s here.

Due to the terrible year that 2020 turned out for all of us, so much has been made of what we can do, who we can see and when we can see them. I am so fortunate that I will be with the most important people in my life, my wife Kirsty and sons, Nathan and Jack.

I hope that when you are all celebrating Christmas that you can just pause for a few moments to reflect on those people that will be on their own for so many reasons.

Please also think about all of the public service workers that will be working over the festive period keeping us safe. One group of workers I always think about are everyone in our National Health Service.

All of us have had to endure the many challenges that Covid-19 has thrown at us and we have all had to adapt to many changes effecting how we life.

Many people will know that I spent 9 weeks in hospital earlier this year. At the end of March, one of the GP’s at the Inverkeithing Medical Practice came out to the house after Kirsty had called them. I ended up in an ambulance and ruched to the Victoria Hospital Kirkcaldy (VHK). I ended up spending a week in there with pneumonia.

Only 2 weeks later, I was back in the VHK for 2 days before being transferred to the Royal Infirmary Edinburgh (RIE). I ended up spending 8 weeks on Ward 102, and at times the High Dependency Unit (HDU).

I ended up being really ill with Sepsis and I have been left a rare chest infection called Staphylococcuss Lugdrenesis. I have already written about this, but what I left out was that on 3 separate occasions Kirsty received phone calls to say that I was that ill, I ‘might not make it through the night’!

I will never be able to thank all of the staff that not only saved me, but got me back on my feet. But I did manage to send a gift to the staff on the ward for what they did for me and my family. Thanks to them I am here and able to celebrate Christmas with my family.

My ill health and health journey, has made me appreciate and value life more than ever. It has also made me appreciate Kirsty and everything she does for me and our family even more.

Please have a Merry Christmas and that you and your family are able to have a great day, where ever you are and what restrictions that we are all facing.

I came across this amazing piece of festive art by Stuart Crouch Creative. This really sums up what I feel about 2020 and moving into 2021.

Thank you Stuart for giving me permission to use this piece of art. It really does sum up how this year has been and we can only hope that there is some ‘light at the end of tunnel’ sometime in 2021.

Merry Christmas everyone and all the best to you and yours.

The Healing Power of Music….

Sarcoma UK – Prog in the Park April 2019Podcast

The inaugural Prog in the Park was in aid of the cancer charities – Maggie’s Centre’s and Sarcoma UK. I decided that Maggie’s Centre’s would be one of the charites due to how supportive that they have been with me and my family during my cancer journey.

I was going through 30 radiotherapy treatments during January and February 2012. Then four years later, I was going through another course of 30 radiotherapy treatments during January and February 2016. When I was going through all these treatments at The Edinburgh Cancer Centre Western General Hospital Edinburgh (WGH), I would sometimes drop in to the Edinburgh Maggie’s centre. I would either go in for a coffee and a blether, to seek advice or for somewhere to sit and collect my thoughts.

When I have had appointments at the Victoria Hospital Kirkcaldy (VHK) Fife, I would often drop into the Maggie’s Centre for a coffee and a blether. So it was only natural that I would choose Maggie’s as a charity to raise awareness and much needed funds for.

Please go to maggies.org for up to date information on the services they have available.

My Sarcoma’s

When I had surgery to remove tumours from my spine at the WGH in January 2012, I was informed that it was a glomus tumour that the surgeons removed. I was back at the WGH in October 2012 for further spinal surgery, this was due to a reoccurrence of the first tumour.

The pathology result from this second operation showed that the glomus tumour came back and growing at a fast rate. When I asked for more information about glomus tumours I was told that these are part of the rare sarcoma group of cancers. My oncologist told me that out of the roughly 240 odd different types of cancer, sarcoma’s are more or less half the amount of cancers.

Then in October 2015, I had the surgery that removed a massive tumour from the ‘wall of my chest’. I won’t go into this much as it is well documented already on this web site and my social media sites, but 1 month after surgery I was told that I have ‘malignant myoperyictoma’. 

Malignant myopericytoma is also a part of the sarcoma grouping of tumours, however, this is extremely rare. I was told that it’s so rare that I am ‘one of fifteen’ people in the world with this condition. Several months later, I started my ‘One of Fifteen’ social media campaign.

Sarcoma UK

So when it came to choosing another charity to raise awareness and funds for it made sense to include Sarcoma UK.

At the inaugural PITP both Maggie’s Centre’s and Sarcoma UK were represented at the festival, with information stalls and staff and volunteers from the charity on hand to answer any questions.

Sarcoma UK’s Digital Communications Manager, Enda Guinan represented the charity at PITP. But Enda spent some of his time interviewing myself, my wife Kirsty, Alan Reed, Altres and a few others about their involvement at PITP.

The interviews also covered the subject matter for Enda’s podcast –

The Healing Power of Music – an area that has helped me throughout my many many years now of living with ill health and chronic pain.

You can hear this podcast at:

https://sarcoma.org.uk/news-events/i-am-more-podcast/kevins-story-healing-power-music

You can also find this at – Apple Podcasts/ Spotify/ Soundcloud

Prog in the Park 2.0

Tickets for PITP 2.0 cost £25.00 and can buy them at:

proginthepark.com

PITP 2.0 is in aid of MacMillan Cancer Support. Keep checking here and the social media sites for updates and for news of a competition that I will be launching soon.

Stay safe  Stay alive

Kevin

 

WORLDWIDE 🌎 SARCOMA AWARENESS MONTH JULY 2020 & SARCOMA AWARENESS WEEK UK 29 JUNE -5 JULY 2020

#SARCOMAWONTWAIT – 29 JUNE – 5 JULY 2020

Across the world, July 2020 is Sarcoma Awareness month. Here in the UK, Sarcoma Week is from today Monday 29th June – Sunday 5th July 2020. The charity Sarcoma UK has a list of events which include:

Demand early diagnosis, saves lives: Today the charity is launching a report that tracks the experiences of people across the UK that has shared there experiences of life with a sarcoma with the the charity. The report also outlines Sarcoma UK’s pledge to improve early diagnosis in the UK.

Release your ballon, schools out race: Why not take part in the School’s Out Race at 8am on Friday 3rd July 2020. You will find more details about this balloon racing, including how to join at: https://ecoracing.co/race/view/10

The charity are organising other events and you can find out about them at:

https://sarcoma.org.uk/get-involved/26-challenge/sarcoma-awareness-week-29-june-5-july

#NIPCANCERINTHEBUD

UNDERSTANDING SARCOMA

Sarcomas are uncommon cancers that can affect any part of the body, on the inside or outside, including the muscle, bone, tendons, blood vessels and fatty tissues.

15 people are diagnosed with sarcoma every day in the UK. That’s about 5,300 people a year.

There are around 100 different sub-types of sarcoma.

When I first had surgery to remove the tumours on my spine in January 2011 and October 2011 I was advised that these were part of the sarcoma group of cancer’s.

Then in October 2015 when I had surgery to remove the massive tumour from the wall of my chest, I was told that the tumour is called malignant myopericytoma and it’s also from the sarcoma group of cancers. 

Due to the size and rarity of this tumour, it took one month to diagnose. The tumour was sent to pathologists across the UK before it finally ended up in the USA, where it was finally diagnosed.

Sarcomas commonly affect the arms, legs and torso. They also appear in the stomach and intestines as well as behind the abdomen (retroperitoneal sarcomas) and the female reproductive system (gynaecological sarcomas).   

  • Bone sarcomasaffect about 611 people in the UK each year – 1 in 9 sarcoma diagnoses are bone sarcoma. Not all bone cancers will be sarcomas.
  • Soft tissue sarcomas:  are the most common type of sarcoma, around 88% of sarcomas are a type of soft tissue sarcoma.
  • They can affect any part of the body; they develop in supporting or connective tissue such as the muscle, nerves, fatty tissue, and blood vessels.  Soft tissue sarcomas include:  
  • GIST: is a common type of soft tissue sarcoma; it develops in the gastrointestinal (GI) tract, a long tube running through the body from the oesophagus (gullet) to the anus (back passage) and includes the stomach and intestines.  
  • Gynaecological sarcomas (sometimes shortened to gynae sarcomas) occur in the female reproductive system: the uterus (womb), ovaries, vagina, vulva and fallopian tubes. You may also hear the term uterine sarcoma. They can affect women of any age.  
  • Retroperitoneal sarcomas occur in the retroperitoneum. This is an area behind the peritoneum, the lining of the abdominal space that covers the abdominal organs. The retroperitoneum is deep in the abdomen and pelvis, behind the abdominal lining, where organs such as the major blood vessels, kidneys, pancreas and bladder are located.

More research needs to be done to fully understand how these cancers develop and spread and how best to diagnose and treat them. People can survive sarcoma if their cancer is diagnosed early, when treatments can be effective and before the sarcoma has spread to other parts of the body.  It is vital that patients be referred to a specialist sarcoma team as early as possible. 

You can read more of this report from Sarcoma UK at:

https://sarcoma.org.uk/about-sarcoma/understanding-sarcoma-0

The report also examines; FACTS AND FIGURES, INCIDENCE, SURVIVAL and AWARENESS OF SARCOMA.

“IT SOUNDS LIKE SOMETHING FROM A HARRY POTTER MOVIE!”

I’M SO SORRY, WHAT DID YOU SAY IT WAS CALLED AGAIN

During the time I was recently in the Royal Infirmary of Edinburgh (RIE), I had built up a good relationship with all the staff on Ward 102. There was some staff that I got on a lot better with than others, but these things happen all the time and in all aspects of life.


In general though, I can say that all of the staff that I saw within the eight weeks were all great. There is always the different staff members that you get on that bit better with. It can be for instance, certain clinical support workers, nursing staff and doctors.


There was about four or five of the junior doctors I would get on with and be able to talk freely with. Mike, was one of those junior doctors. Mike was fascinated with what I have been going through with my health over the last 13 year, as were several others.


Due to the type of infection that I had in my chest, I was ‘hooked up’ to have anti biotics delivered by Intravenous (IV) Infusion. There was several days that I would be ‘hooked up’ for twelve hours. Then it was down to seven hours then finally it was roughly 4 hours. These treatments were all spread out throughout the day.


During these IV sessions I would either listen to some music via my iTunes account, or watch TV series on my iPad via Amazon Prime, Netflix, Disney Plus, Apple TV or Sky. This really did help fight the boredom during these treatments and also help take my mind off thinking about it.


I would call Kirsty and Nathan every day and if I got a decent reception I would call via Facetime. During these calls Nathan would see the machine that delivered the IV treatments. I would say to Nathan that if I had to go to the toilet then I would have to take the machine etc with me. The nurses etc would say to me that I should name it due to how long I was on the thing. So I asked Nathan to come up with a name for it, he decided to name it after a video game character called Marx.

“Well there’s another 4 hours of my life I won’t get back with this lot being pumped into me!” 😉
My homemade Get Well Soon Card from Nathan. Kirsty helped him a ‘wee bit’.


This was my third time on Ward 102 at the RIE and a lot of staff had remembered me from those occasions. The consultant I was under this time was Mr Zamvar, in the past it was Mr Walker (now retired) and Mr Will.


Mr Zamvar and his registrar Mr Baggi, both explained to me that I was needing to have my bloods regularly checked. This was to see how my body was reacting to the anti biotics that I had to take. There would be some times that the nursing staff would find it hard to find a vein to put the needle in to draw the bloods from me. So it was left to some of the junior doctors to do it. So Mike, Osman and Aspen were the doctors that would carry out the task.


Just before the doctors would look for a vein to put a needle in me, they would always say sorry. I often asked them why are they sorry, after all these guys were getting on with their jobs. Then this often would lead to us having a good blether about whatever was happening in the world , etc.
During the times the doctors would be do their morning rounds, I asked a couple of times what the name of the infection was. The reply was usually met with it being rare and the microbiologists still trying to find out.


It was in my seventh week during the doctors morning rounds when Mike told me “ oh I have some news for you Kevin”. He said, “The infection that you have is called, Staphylococcuss Lugdrenesis and this is really rare”.


My automatic reply to this was, “I’m so sorry, what did you say it was called again?” When I told Kirsty about this when I called her after the doctor’s rounds, she said,“It sounds like something from a Harry Potter movie Kevin”. The next morning when the doctors were doing the rounds I said to them what Kirsty had said about Staphylococcuss Lugdrenesis. Even though the doctors all had masks and PPE on, you could tell they were smiling. Mr Baggi had commented to me, ” it’s really encouraging to see that have kept a good sense of humour and that your upbeat. We really don’t know how you manage especially with everything that is going on with you”.

“YOU HAD US ALL REALLY WORRIED ABOUT YOU KEVIN”.

Before I spent all this time at the RIE, I was a patient at the Victoria Hospital Kirkcaldy (VHK). I was in there for four days and I was diagnosed and treated for pneumonia. I felt really rough when I was first discharged and I wouldn’t have imagined that less than a fortnight later I would be back in the VHK.
Before ending up back at the VHK, I was in such a bad way with pain and Kirsty could see how bad it was, she called our local medical centre.

Due to the COVID-19 pandemic, the medical centre is running a triage system and Kirsty described all my systems to a GP when she called. It wasn’t that much longer after Kirsty had been speaking to the GP when she arrived at the house to examine me. Once she finished examining me she told myself and Kirsty that I will have to go to the VHK.


The GP excused herself and she went to her car to make some phone calls. After making her phone calls, she explained to Kirsty that an ambulance was on its way to take me to the VHK. Then she said to Kirsty to pack an overnight bag for me and also to include all of the prescribed medications that I am on.

The short time I was in the VHK, I had various examinations and scans. It was when the scan results came back, I was told that I would be going to the High Dependency Unit (HDU) then Ward 102 at the RIE, the specialist ward for cardiac and thoracic patients.

A rare smile from me when I was in HDU


I was talking to Kirsty about my time in the VHK and the ambulance transfer from there to the RIE and there is very little that I can remember from that time. In fact there is very little that I can remember from the first two weeks in the RIE.


It came to a point that when the doctors were doing their rounds and when they would explain to me what would happen with treatments etc, I just wasn’t taking it in. So when I was on the phone to Kirsty I explained this to her, Kirsty would then call the ward to speak to one of the nurses that was looking after me.


During the first few weeks in the RIE I was told that I had Sepsis and that I was really ill. Due to how ill I was, I was really confused and there was times that I didn’t know where I was. The times that I was confused, there was a few times that a member of staff would sit at the door of my room due to how ill I was. It was also to ensure that I didn’t hurt myself when I was in this state.


Throughout these first two weeks in the RIE I can remember very little about it, although I have had a series of flash backs. During this time and due to the infection I had to be in a side room and be away from the other patients. I can remember that I had ‘passed out’ in the side room a couple of times one day.


When I felt less confused and when the doctors and nurses told me about these periods of confusion I asked Mr Zamvar about why I was like this, he replied, “Kevin you are seriously ill and the infection is making you feel this way. It is understandable that you have feeling been like this”.
He continued by saying, “You will notice a big difference soon when we start treating you on the IV anti biotics”.


As I have mentioned already, I had no idea how ill I really was and it was when I was on the phone to Kirsty, she explained to me what I was going through and how ill I am. Kirsty said to me that I was really ill and even though I was being treated, I that I will be ill for a considerable amount of time.
There was quite a few of the nursing staff would say to me that there was a few times that I had them worried that I was in such a bad way that it looked as if I wasn’t going to ‘make it’. I said to them that I really couldn’t remember much and I thanked them for being concerned, but more importantly, for nursing me and getting me better.

THANK YOU FOR EVERYTHING

In between the IV sessions and when I would get my next medications, if I was feeling up to it, I would go for a walk. Before doing this, I always asked if it was ok for me to do this and if so, I would be no longer than one hour.

There was times that I went for a walk due to it being a beautiful day outside, or, I wanted to get away from the general noise in the ward or even just for me to clear my mind.

A couple of times I would go to the cafe for a bacon roll and a coffee. Other times I would buy a coffee from the coffee shop in the main hospital reception area and I would drink it outside when it was a nice day. Sometimes I would go for a walk around the hospital grounds and the walkways in the area and sometimes I would go to either Marks and Spencers or WHS Smith’s.

There was several times that I would buy boxes of chocolates or biscuits for the staff on Base A or Base1, whatever it is called on Ward 102. This was always the group of nursing staff that looked after me. This was just my way of saying thank you for looking out for me.

Another time I bought a box of chocolates for one member of staff as she took the time to cut/shave my hair. This was my way to say thank you and that I really do appreciate her doing this. 

I have also sent the staff on the ward a couple of ‘thank you’ cards. I went on to Moonpig or whatever one it was, and I ordered a card and I made sure that it would arrive after I was discharged. The first card I sent was in Week 5 and it was at the end of the first three weeks on IV treatment. Then Mr Zamvar and Mr Baggi told me I would have to stay for another three weeks to fight the infection with more IV treatments.

Then I sent the second card in time for when I was finally being discharged. I know that the staff appreciated the chocolates, cards, etc, however, I want to buy a gift for all the staff on the ward.  So I spoke with the senior staff charge nurse on the ward and asked her what I can buy them something that will last, rather than chocolates and flowers. This is so I can show my appreciation for what all the staff did for me.

Once again, the NHS has not only saved me, but they have helped me to get back on track with my life. While I recover, I can never thank this amazing group of staff and our NHS enough for what they had done and continue to do for me so that I can have a decent lifestyle.

Stay safe  Stay alive  Kev x

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