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).
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.
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
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:
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 sarcomas: affect 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:
“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.
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.
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.
There has been a few times this week that certainly have had its moments here on Ward 102 at the Royal Infirmary Edinburgh (RIE). It really has been a hard week, especially as I thought that I would have been back home with Kirsty and Nathan.
Every time that I have ended up in hospital, I have always missed them. But we have been keeping in touch everyday and I phone a couple of times per day via FaceTime.
FaceTime calls have been great and I have been able to see Kirsty and Nathan, but its just not the same as being there with them. However, it has let me see how they are both keeping on a daily basis and not just hear their voices.
While this has been hard for me, I keep reminding myself that this is also hard for them and for the other patients here on the ward and in the hospital. Then of course there are the thousands of other people across the country that are missing there loved ones and seeing them as they are in a hospital.
As most people that know me, are aware that I have been in hospital many times now. When I been in hospital in the past, I have been able to receive visitors. But during these hard and unprecedented times with the country continuing to be on lockdown due to COVID-19, we still are not allowed to have visitors.
FAIRNESS NOT ELITISM
I am very fortunate to have a good support mechanism with having a family and friends network that help when I have ended up unwell and hospitalised. So I am so grateful to those that have helped out by bringing over some fresh clothing and supplies. They also take my ‘dirty’ laundry back for me.
Every time that this has happened, I have been fortunate enough to spend a short time with either a friend or a family member that has come over from Fife to the RIE.
The distance they have travelled is under a 50 mile return trip. I say this as it’s hardly a return trip of over 500 miles and its not as if it’s like driving from London to Durham.
So as I approach week 7 here in the RIE, I have not been able to physically see my wife Kirsty and our son Nathan. When I saw last weekend in the media that the Prime’s Ministers ‘chief advisor’ Dominic Cummings, jumped in his car with his wife and four year old son and the went to his in-laws in Durham, I was livid. Then to hear that he had done this twice, then I was furious.
Most people living in the UK are aware that it was Cummings and his advisory team to Boris Johnston and his Cabinet that drew up the UK’s lockdown instructions.
Even though I am ill and in hospital, I found the energy to be able to contact a few news outlets to air my views on the ‘Cummings Affair’ . One of the local newspapers, The Courier, featured my health story and views on Cummings and the ‘one rule for them and one rule for us’ elitist attitude.
You will be able to read my views here:
I am currently on my 6th week in the RIE on Ward 102. This ward specialises in cardiac and thoracic patients. The level of care by everyone from the housekeeping staff, students, clinic support workers, nursing staff, specialist staff, physio’s, doctors, registrars and consultants, really is remarkable. Thank you so much from the bottom of my heart.
For 3 weeks I was on an aggressive form of antibiotic that I was taking 4 times per day by an intravenous line (IV). Each treatment lasted 30 minutes and I also had to take 3 different types of anti biotic tablets on top of that.
I have a new regime now being hooked up to the IV line. For just over one week I was hooked up for 12hrs. I would have;
2 x 4hr sessions.
2 x 1hr sessions.
2 x 30 min sessions.
This was stopped and then for the rest of my time in here I will be on a programme of 3 x 2 hrs 30 mins sessions.
In total I will be in the RIE for 8 weeks and 6 of those weeks have been spent on an aggressive form of antibiotics.
The reason for this severe and aggressive form of antibiotics is due to a large abscess inside my chest. Due to the surgery that I had in October 2015 to remove the massive tumour on the wall of my chest I had to have a ‘chest rebuild’.
I have been told in the past that if I was to get a reoccurrence of the tumour, then I would be put on a palliative care package as its such a high risk operation and it could kill me.
Due to the amount of infection I have on my chest, the medical team I am under right now have said to me that once again, surgery is far to high risk. However, it hasn’t been totally ruled out and this is something that is not going to grind me down by worrying about it.
When I was first transferred from VHK to the RIE, I was in a single room on Ward 102. This was purely down to the risk from myself passing on my infection to different patients.
Once I had been for numerous tests, including the one for COVID 19 (I have had this several times now) I was then able to go into a 4 bed room. During the time in a 4 bed room for men, I have come across some fascinating people with some interesting tales about their life’s.
Every morning the doctors do their rounds roughly about 09:00 and then again around 16:00. Every time I get asked, “Hi Kevin, how are you keeping today?” My answers have been are varied, but one thing I usually end with is, “At the end of the day I fully understand why I am in here and what you are doing to get me back home”. Then followed by, “Yes it’s frustrating being unable to get back home to my family and I appreciate what you are all doing for me”.
This is usually met with “you are doing really well Kevin and it’s really encouraging to see that you are being really positive about it, especially with how long you have been in here.”
A lot of patients that I have shared a room with have also shared the same sentiments about my positivity and we end up having a blether about it. I usually say to them take being positive while being unwell helps.
But one thing that has also helped me and how I have this positive attitude is how strong Kirsty and Nathan are being. Not just about me being in hospital, but how they are coping about the COVID 19 and lockdown situation.
Yesterday, Saturday 30 May 2020, My niece Anne Marie (she is more like my wee sister) had come over with a bag of fresh and clean clothes and some supplies that I had Kirsty for me.
This time I was allowed to see Anne Marie and spend some time with her as long as I had to wear a protective mask outside the room on the ward. So with it being such a nice day, we both had a coffee outside (we both observed the social distancing rule) and had a wee blether.
When I finally got back to my room and when I was going through the clothes and my ‘supplies’, I got a pleasant surprise when I noticed a home made ‘Get Well Soon’ card from Kirsty and Nathan. This put a smile on my face as I settled back down in this very hot hospital room. This cheered me up even more and I appreciate the effort they have put into making it.
Once again, thank you for reading this and Stay safe and Stay alive
The other day while exercising by walking up and down the ward with my mask on, I was having a read of the staff and public notice boards. There is some really interesting information for NHS Lothian staff and patients alike.
The Ward that I am on, Ward 102 at the Royal Infirmary Edinburgh is a specialist Cardiac and Thoricac ward. The ward can take a maximum of 34 patients.
So on the notice boards, you can also see Thank You cards from patients, due to the current coronavirus pandemic, a lot of children have sent in rainbow paintings for the room windows. It really is great and heartwarming to see this.
I also came across an original poem called: One Hundred and Two. So I thought that I would share that with you.
WARD ONE HUNDRED AND TWO
It’s now early morning and the sun is up
Here comes a bonnie lass with a plastic cup.
One pill for this and two pills for that,
A jug of iced water, breakfast after that.
I glance in the mirror, don’t like what I find
Dracula and Frankenstein come tae mind.
Nurse shouts, “*****” give yourself some slack.
Now into the shower and I’ll wash yer back.”
Feeling much better I look around
The ward is full, everyone sleeping sound.
Another day brings a new lot in
Nurses settle them down behind the blue curtain.
I feel their pain and sense their fear,
I talk like crazy to bring them some cheer.
Trying to tell them it’s going to be fine
This pain and discomfort will all pass in time.
It’s all thanks to you I am home getting better,
This is why I send you this letter.
Too many names to mention and remember,
But will I forget you? No chance, never!!
So it’s love to you all, let me bid you Adieu
To the wonderful crew at one hundred and two!!
When I first read this, I couldn’t believe it for I share the exact sentiments of the author of this, however, I just wouldn’t be able to write it in his unique style. So thank you for writing this and sharing this.
I know that the staff really like this and as a patient for the third time in this ward I love it. The team on this ward, along with several others here at the RIE, Western General Hospital (WGH) Edinburgh, Victoria Hospital Kirkcaldy (VHK), Victoria Hospice, Queen Margaret Hospital (QMH) Dunfermline and Inverkeithing Medical Practice where my health journey began and continues, have saved my life several times now.
While I sit on my hospital bed writing this I once again like like to say thank you so much for everything that NHS Fife and NHS Lothian staff have done for me. You have not only saved my life, but you have ensured that I can have a decent quality of life with my wife Kirsty and my sons Jack, Ben and Nathan.
With everything that is going on across the UK with Coronavirus and the level of selfishness that we are witnessing daily, my faith in humanity was restored on Tuesday 12 May 2020.
It was roughly at 16.45 and the nurses had set me up to my ‘pic line’ so that I was able to get my third IV antibiotic treatment of the day. It must have been a good 10 minutes into the treatment and I could hear a phone call to the ward reception that is just outside the room that I am on the ward.
During this short phone call, I could hear my name being mentioned by a member of staff and her saying that I was “hooked up” to the IV line and getting treatment. Then the next thing I could hear was, “can you bring it up please?”
Then a few minutes later, a 12” Pepperoni pizza from Dominos had been handed in to me. This was right at the moment when we settle down for what is called in here at the Royal Infirmary Edinburgh (RIE), “suppertime”, 5.00PM. Now talk about perfect timing or what!!
The pizza was bought for me by Paul a fellow patient that shared Room 16 on Ward 102 with me for a few days before going in for his operation. What had come about is that we were discussing what we were looking forward to eating when we got out of the hospital and back home. For some reason, I had said a Dominos Pepperoni Pizza and Paul had remembered this.
In my time I have been so fortunate to have met so many people that I would class as a ‘good guy’ and Paul is certainly one of them. He is a 73 years old (he looks a young 60-year-old) married gentleman from Edinburgh and he was telling me that he still works.
He had been telling me that throughout his years, he had been fortunate enough to work around the world as a deep-sea diver.
When we were discussing where we lived, he told me that once he owned a property in Inverkeithing at the Ballast Bank known as the ‘shed’. At the time, the company he had made small deep-sea exploratory submarines. I actually remember this company very well as when it first opened the media had covered it.
We had a really good discussion about Inverkeithing as at the time when I used to frequent the Queens Bar, he drank there and in the old lounge in the Queens Hotel.
Before being discharged, Paul had come along to my room to see me and say goodbye. I had really enjoyed spending some time in his company while he was a patient in the hospital beside me, his stories helped the day go a lot quicker.
When I was first hospitalised to the Victoria Hospital Kirkcaldy(VHK) a few weeks ago now, little did myself and Kirsty know that I was actually so ill, never mind that I would have to stay in the hospital for so long.
As the ambulance was en route for me to take me to the VHK, Kirsty had packed clothes and toiletries for me. There were enough clothes etc for a few days for me. These didn’t last that long and by then I was now a patient at the RIE.
I found out that patients were able to get clean clothes and other stuff dropped off for them. So I was delighted that my niece Anne Marie brought clean fresh laundry for me a few weeks ago.
When a family member or friend is doing this, its a matter of the person being able to press the bell on the door of the ward, then a staff member then is able to pick this up and then bring it around to you at your bed (room). The rules brought in to deal with coronavirus mean that you can’t see the person.
Once I had run out of clean clothes again, my mate Andrew had brought even more across for me last week. Both had quite a bit of dirty laundry to go back to Kirsty.
Andrew had asked me if I was needing some things picked up from the shops when he was coming across, so I sent him a wee shopping line. It was things like cans of Coke, Crisps, Scotch Eggs etc.
When Andrew had arrived at the ward to drop the clothes and shopping off, the ward senior charge nurse let me go to see him briefly, as long as I had my mask on to ‘protect myself’. It was really good to catch up with him. When he left and when I went back to the ward, the first thing I did was get some salt and eat the Scotch Eggs. They were braw and went down a treat.
I really can’t remember who it was that I had been talking to, but I had been saying that I would be asking Kirsty to shave my hair as it was starting to look like a ‘burst couch’.
On Sunday afternoon, one of the nursing staff, Kelly had heard me talking about this and to my surprise, she said that she would quite happily do this for me. However, Kelly had explained that the clippers she had would cut my hair really short as these were surgical clippers, the ones used to shave patients before going for surgery. I had just laughed and said that is exactly what I was after, then a few minutes later I had a great short haircut. This was exactly what I was after and certainly no complaints from me about the shortness.
At the end of the day, I am so grateful to Kelly for doing this for me. Now Kelly really didn’t have to do this for me and I was and still am grateful for this. At the end of the day, I see this as another random ‘act of kindness’. I have thanked her for this kind act as I am grateful for the work that her and all nursing colleagues do for me and continue to do for me while being a patient at the RIE on Ward 102.
INTERNATIONAL NURSES DAY
On Tuesday 12th May 2020, it was International Nurses Day. I have already highlighted this on my Facebook page and the One of Fifteen Facebook page.
I have always had admiration for the work that nursing staff do. This goes back to when my mum was a nurse when I was a lot younger, a lot lot younger.
My mum had worked on the various hospitals that used to be in Dunfermline before the four were knocked down. My mum before she retired from the health service went on to be a ‘district nurse’ and this was a job she really enjoyed.
My sister Theresa was also a nurse, a senior charge nurse in charge of a mental health day hospital in the Queen Margaret Hospital (QMH) Dunfermline before she retired.
Finally, my sister-in-law, Nicolle is a nurse at the QMH Dunfermline. So it’s fair to say that due to this family affair with nursing, I have nothing but admiration for every single nurse.
My mum used to say that for her it wasn’t a ‘career’, for her it was a ‘calling’, ‘a calling to help people when they need help the most’!
Nurses care for our loved ones at some of the most difficult times in their lives. Right now, the care and attention that I am receiving from the nurses on Ward 102 at the Royal Infirmary Edinburgh (RIE) really is fantastic. Then when we turn on our TV’s and watch the news and see what nurses are doing during this coronavirus pandemic really leaves me in awe of them.
I have always had admiration of the work that nursing staff do and carry out on a daily basis. This goes back to when my mum was a nurse when I was a lot younger, a lot lot younger.
I can remember growing up when she was training, when she qualified and when she went on to work on the wards in various hospitals in Dunfermline.
My mum later went on to be a ‘district nurse’, a job that she enjoyed before her nursing career was cut short due to ill health. My mum passed on so much encouragement to many many students nurses and she was well respected due to this caring quality about her. Still to this day, when I see a nurse at my local health centre, Helen, she speaks so fondly about her before I get an injection in my arse!
My sister Theresa was also a nurse, a senior charge nurse in charge of a mental health day hospital at the Queen Margaret Hospital (QMH) Dunfermline before she recently retired.
Nicolle my sister-in-law is also nurse and she works at the QMH Dunfermline. So it’s fair to say that due to this family affair with nursing, I have nothing but admiration for every single nurse and I am in awe of them.
My mum used to say that for her it wasn’t a ‘career’, for her, it was a ‘calling’, a calling that would let her help people when they need help the most in their lives!
Being totally honest, it wasn’t until a few days ago that I became aware that the date of International Nurses Day was today. Please support this day and celebrate it for our nursing staff as this is a unique group of staff and people that deserve this worldwide recognition.
Please accept my apology for the lack of any updates on either the Prog in the Park 2.0 (PITP 2.0) Facebook Group, FacebookPage or on proginthepark.com
PFollowing on from my admission to the Victoria Hospital Kirkcaldy (VHK) Fife in March with pneumonia, I find myself in the Royal Infirmary Edinburgh (RIE) where I have been battling severe infection. This has left me totally exhausted and in no way well enough to respond to ongoing PITP 2.0 or at times my day to day well being to loved ones.
Once again, the quality of care from staff with NHS Fife and NHS Lothian really has been amazing.
Please be rest assured that I postponed PITP2.0 due to Coronavirus Covid-19and it will now go ahead in most likely April 21 and it will be in aid of MacMillan Cancer Support. Thank you so much to those people that have already bought their tickets for PITP 2.0 and they will automatically be transferred to the event next year. If anyone wants a refund that has bought a ticket, then please contact ticketlab.co.uk
The original ticket price is £25.00 and that includes the booking fee. If I have to increase the ticket price then please note that existing ticket holders will have no extra to pay and any ticket increase will be kept very low.
There might be a change or two in the line up for PITP 2.0 and this is something that I will keep you updated.
Thank you so much for your understanding and I appreciate you support.
Stay safe, stay indoors and keep blasting out you favourite prog rock music.
My intention was to write an article about what I was going to call APPOINTMENTS, APPOINTMENTS, APPOINTMENTS for my One of Fifteen social media campaign. I actually wrote quite a bit about the number of appointments that I had earlier this year. This included the appointment for an MRI scan and scan results I got recently when I had my oncologist appointment.
Then last week I was dealing with Prog in the Park 2.0 and how Coronavirus (COVID – 19) is responsible for the number of concerts and other events being either postponed or cancelled. So I felt it was better to write what’s happening now!
Today, Thursday 19 March 2020 I received either phone calls or text messages saying that three medical appointments would be cancelled.
When I was checking the answering machine after getting home after I dropped off Nathan at school. I had a missed call from the Sleep Clinic Royal Infirmary Edinburgh.
I called back and I was told that my forthcoming appointment was now cancelled.
It wasn’t much longer than that when I received a text message from my local GP surgery which was letting me know that my next appointment is now cancelled. That appointment is for a date next week and due to all my health issues ongoing severe health issues, it was a double appointment.
Then just around 2:00pm, I received a phone call from my physiotherapist. My next physio appointment which was due in the first week in April is now cancelled. When we were talking about cancelled appointments I was told that the physios were calling all their patients, not only to cancel appointments but also to ask how we are keeping and is there any issues that’s cropped up.
We had a good chat and I was told that if the physiotherapy department doesn’t hear back from me by the end of July 2020, I would be discharged. This is even though they are aware that some patients like me still need appointments. So basically I call back at the end of June to keep getting these appointments.
In the space of a few hours, three of my regular medical appointments were cancelled. However, I know that this is only the start of what will be more to come. I fully understand that the Corona Virus (COVID-19) is the number 1 priority for our NHS.
It really is the times like this and with this crisis in place that we really do need to get behind our NHS and not go about making flippant negative comments that we all hear from some people.
I had to make and take a hard decision about Prog in the Park 2.0 and if it goes ahead or not. At the end of the day, the last thing I want to do is put my own health, my families, friends and those attending health at risk. So I wrote to the venue, pa company, bands, stallholders and everyone involved that I was postponing PITP 2.0.
I put the following statement on the PITP 2.0 Facebook group and page;
PROG IN THE PARK 2.0 STATEMENT ON CORONA VIRUS (COVID 19)
Thank you for your patience about Prog in the Park 2.0 (PITP 2.0) and if it still goes ahead on Saturday 4th April 2020 or if it’s postponed. I did promise a statement on it this weekend.
At the time of writing this, a Facebook alert came up regarding the Fish gig at the end of the month in Edinburgh. This coronavirus is really hammering into all aspects of life and I am not prepared to take a cavalier attitude with it.
One thing I am not prepared to do is put myself, my family, my friends, and everyone involved with the production of PITP 2.0 and every one of you that was intending to be there at risk.
It really is with a heavy heart that after taking counsel, I am postponing PITP 2.0. There has been a lot of hard work been put into this by myself and others and I am gutted that it is now postponed.
I would like to thank everyone that has assisted me with PITP 2.0 and rest assured it will be going ahead later in the year.
If you have bought a ticket for PITP2.0 then this will be fully transferable to the rescheduled event.
A lot of work was put into PITP 2.0 and it was going to be a cracking day. This week I have been chilling out and looking after my health. Next week I will be working on finding an alternative date for all concerned.
Thank you for the support that you have all given me.
This virus is going to go on for several months and who knows the effect it will take across all aspects of society. Please take care and stay safe. #Coronavirusisabawbag
When it comes to updating this website recently, the best word to describe it is “tardy”.
I am sorry that I haven’t updated this site for a while. I could go into the depths of my ‘bullshit’ reason/s why this hasn’t happened, but so much has been going on recently.
I have had a lot of various appointments recently and some of these have been medical. Other appointments have been with MacMillan Cancer Support andother appointments have been to do with Scotland’s Indoor Prog Rock Festival in aid of cancer charities, Prog in the Park.
I am at the stage in my life that my health appointments are basically like a car MOT. A lot of cancer patients will describe their appointments after surgery and then their treatments package of either radiotherapy or chemotherapy like this. I have had surgery and then radiotherapy so many times now and when the appointments are all finished it feels bizarre
So the stage I am at now is that I have a CT and MRI scan once a year (unless I am rushed into the hospital). I will most likely have these appointments at either the Queen Margaret Hospital Dunfermline or Victoria Hospital Kirkcaldy.
Then when my scan is finished, the results of these are then sent to my oncologist at the DCN Unit at the Western General Hospital Edinburgh.
Throughout the year I have numerous other appointments I attend. I see my GP at least once every two months. Due to how complex my health needs are now, my GP tells me to book a double appointment. These appointments are at Inverkeithing Medical Group Friary Court Inverkeithing.
Then every twelve weeks I see a consultant at the Victoria Hospital Kirkcaldy for botox injections into my right shoulder blade. These injections help with the area where one-third of this shoulder blade was removed.
Every ten weeks I see a nurse at my local GP practice. This is for my HRT injections up my backside. With a combination of five major operations, 60 radiotherapy treatments and two proton sessions, this has eradicated my natural testosterone levels.
The botox and HRT appointments are a programme of appointments I have to go for until I die.
Then every six weeks I get my physiotherapy sessions to help with the way my head lies to one side. These are at the medical practice in Dalgety Bay. They are usually at a time that I get a bus once I have dropped off Nathan at school and I have time for either a coffee or a cooked breakfast.
There are other hospital appointments that I have throughout the year, but I won’t bother going into detail about them.
Someone once said to me, “oh I don’t know how you cope with having to go for all of those appointments”. My answer is quite simple really, “at the end of the day, I just get on with it. After all, this routine is about helping me to get better, as I want a better lifestyle”. “I want to feel better so that I can have more and more quality time with my wife and son’s”.
There have been other times when I am out and about and some people will say, “ Good morning or hi Kev or Kevin, how are you today?” My reply is often either, “ Good morning or hi, oh you know me, same old same old” or “ah same shit different day” or “what a braw day, how are you keeping?”.
I am not being ignorant with this reply’s, but the last thing I want to do is reply with something like;
“oh hi Zoe (I don’t know a Zoe), well it’s like this, I had a terrible sleep last night, I was up at the toilet several times and I must have seen every hour on the clock”
“I’m feeling really shite today, my spine is in agony, all the areas where I have had surgery is also giving me grief”. But I don’t, I just want to downplay it and then get on with what I am doing.
So that’s the routine with my medical appointments. It’s a routine that can have different effects on my body and mind. I would be a lier if I turned around and said that these appointments didn’t bother me, of course, they do, after all I am human, just like you.
On Wednesday 4th March 2020 I was at the Western General Hospital (DCN Unit) Edinburgh for my now yearly appointment with my oncologist. It was only a matter of 10 or 12 days before that I was at the Queen Margaret Hospital in Dunfermline for the MRI scan.
The appointment/s that I have with the oncologist is the ones that I like to have someone with me. This is due to the type of news that you can hear at these appointments. Kirsty usually comes along with me to these, however, Theresa my sister accompanied me.
The oncologist that I usually see is currently on holiday and I met with Mr Grant. As Mr Grant came out of his office and shouted out my name and when I went to introduce myself to him, I automatically put out my hand to shake his.
I then sensed a bit awark-ness as he told me that he would usually have no problem shaking my hand. However, due to coronavirus (COVID-19) he told me that guidance includes not to shake hands when meeting someone.
I met him years ago, however, he was fully aware of my background due to the numerous health service internal case conferences that my case has been discussed at.
We discussed my latest results from the MRI scan I had and I was delighted when I was told that there is “nothing to worry about”. These appointments usually last 20 minutes, however, it lasted a wee bit longer. It was a really good appointment as there were issues that we discussed that haven’t been addressed for quite a while.
I was recently at an appointment with an optician as I haven’t been for one for several years now. When going through this appointment I was really encouraged when the optician said that I had ‘excellent eyesight’. However, when it comes to looking at things in the distance, I need glasses for making out the finer details. So I will have to get into a habit of wearing these for watching TV, gaming, movies, football etc.
I have also been getting on with the preparation work for Prog in the Park 2.0 Scotland’s Indoor Prog Rock Festival in aid of Cancer Charities and that is going well. There are regular updates on the PITP 2.0 social media sites and also at proginthepark.com
Tickets are £25.00 which is great value and you can get them from the website. If you would like to sponsor PITP 2.0 or make either a donation or donation or provide a prize for either the raffle or auction, then please contact me at: