FINDING MY WAY

HELLO, IT’S BEEN A WHILE

There’s been a steady flow of friends etc getting in touch over the last few weeks asking me if I am ok, how are you – that type of thing. When I have said that “I’m fine, thanks for asking” and then when I’ve asked them, “is there something wrong etc?” The general response from most people has been along the line off, “it’s just that I haven’t seen anything from you online for a while”. 

So to those out there wondering how I have been, “thank you for being so concerned about me, I apprieciate it. It’s just that over the last few weeks I have had numerous medical apppointments including CT and MRI scans and I have came back knackered. So when I am like that I am just in no mood to write etc. Thank you everyone that has been kind enough to ask about me etc”. It’s fair to say that I have found my way back to this site.

I was also on an unexpected ambulance trip to the Victoria Hospital Kirkcaldy exactly two weeks ago. The paramedics were really nice guys and they really looked after me. I was discharged later that night.

REGULAR SCHELEDULED CT / MRI SCANS.

It was Monday 18 February 2019 when I had my CT and MRI scans. Both of these scans were at the Queen Margaret Hospital (QMH). When sitting in the waiting room for my CT scan, the BBC News was on and they kept making reference to a meeting with a group of MP’s was going to happen soon at Westminster.

I was struggling to hear the news and I was then called for my CT scan. Before going into the room to get my scan, I had the usual testing my veins for the canula for the contrast to go through. My arms were some mess, as both were tried before the neddle managed to hold on to a vein. I had a good chat and laugh with the member of staff that does this at the QMH.

IMG_0653.jpeg

(This photo of my arms was 3 days after the scans.)

Then it was time for the scan itself, so once in the room the staff were telling me the best way to lie down etc. The scan lasted for roughly 10 minutes or so and due to me going for a MRI scan next, it was explained to me that the canula would be left in as I was also to get the contrast while getting the scan.

Once I let the staff know that I was there for my MRI, I was asked to just take a seat in the waiting room. Once again the BBC News was on the TV and it was the press conference of the Labour MP’s that had just resigned from the Labour whip.

While this was going on I got talking to a woman that was waiting for her husband to get his MRI scan. We had a really good blether about these MPs and I was giving it that they should resign completely from being MP’s, after all they were elected as Labour MP’s first and foremost!!

We really did have a good chat and I was then asked to get ready for my scan. Once I was ready, I was then asked what music did I choose to listen to when under the tunnnel. So for a complete change, I went for Dire Straits.

Many people that get a MRI scan will tell you how noisy it is, even when listening to music. During this MRI scan I could actually hear the music with no problems of hearing the noises of the machine. It was actually the first time in a while that I had listened to Dire Straits. 

While I am on the subject of Dire Straits, they were the first band that I went to see in Europe. Myself and an old mate saw a coach tour from London advertised in The Sunday Mail to see Dire Straits in Belgium. This was in April 1985, I had just turned 16 and one month later I would be leaving school. The gig was in The Forest Nationale in Brussels and what a great gig it was.

The band were promoting the Brothers in Arms album and they were heavily sponsored by Philips as this was the start of the CD revolution.

So during the MRI scan, I was actually getting some ‘flash backs’ of the gig in Brussels. The scan itself went well. Both the staff at the CT and MRI machines at the QMH Dunfermline are great. I had a good chat with the guy that first scanned me in away back in October 2010 when I was then diagnosed with a paras-spinal tumour and not chirosis of the liver!

It would be a week later when I would get the results back from these sets of scans when I would see my oncologist at The Western General Hospital Edinburgh (WGH).

ONCOLOGY

On Wednesday 27th February 2019, I had my schelduled once per year now oncology appointment at the DCN Department at the WGH.

Kirsty usually goes along to these appointments, when she can, with me. However it wasn’t to be this time. Nathan was now on his second day off school due to him having chicken pox, so Kirsty stayed at home to watch Nathan.

I arrived at the WGH roughly 20 minutes before my appointment and I really didn’t have long to wait. I had just put some music on my phone and I had my headphones on, then the next thing I could see and hear my oncologist shouting out my name.

Due to me suffering from ill health for over 12 years now, I have build up a really good patient – oncologist relationship. These routine appointments are usually 20 minutes long. That’s 20 minutes to go in to an appointment to discuss: general health, how you are felling, CT & MRI scan results, to be told that you have cancer or not, to be told if you are going to live or not. I’m affraid that 20 minutes is NOT enough time to discuss what happens next.”

This particular appointment went well and basically when it came to telling me the results, it was a matter of, “well Kevin the results of your scans are back and there’s nothing for you to worry about”.    

I had a wee sigh of relief and then the big daft smile came. We then had a brief chat about seeing my oncologist once per year now and my next appointment would be at the Royal Infirmary Edinburgh (RIE) as the DCN Department at WGH is being transferred there. This was actually supposed to happen in 2018, but there has been a series of delays.

We then had a brief discussion around how I feel ‘mentally’ during the time I get my CT & MRI scans. It can be hard and draining due to the various levels of chronic pain that I deal with and the tricks that it can play on the mind. Just before leaving I was told to speak to the receptionist and make an appointment for March 2020.

So that appointment is now out of the way and its now back to all my routine appointments as usual. 

MACMILLIAN CANCER SUPPORT

I have said before that I want to do some volunteering with a charity. Even though I am medically retired, I really would like be to involved in a volunteer position with a cancer charity. The reason for doing this is I that I feel that I still have the key skills required to help a charity, and that I want to ‘give something back’.

Several weeks ago I met with Janice Malone from MacMillan Cancer Support. I first became aware of Janice was when she appeared on the BBC 2 programme Timeline on behalf of MacMillian. 

 

 A couple of weeks ago now, I had a meeting with Elllie Bryant at Macmillian’s Edinburgh office. Ellie had travelled up here from the charities London office to interview me.

Ellie had told me that her position with the charity is; Senior Inovation Consultant for the Inovation team. Ellie told me that she is heading up two major projects for MacMillian. One is anEmotional and Practical project and the other is a Treatable but not Curable project.

So part of the meeting was a one to one interview on my cancer journey. As I have been dealing with tumours for a good number of years now, I agreed that Ellie could record the interview and meeting. This would make it easier to write about.

We both had a really good meeting and I was told that my contribitions would go into the final findings of both subjects.

Then last week, I had a meeting with the charities Engagement Lead for East and South of Scotland Jen Watson. After dropping Nathan off at school, I got on a bus to Burntisland. I met Jen in The Roasting Project – Coffee House, the last time I had been in there must have been 3 years ago. Our meeting lasted for a good 2 hours plus. We discussed my One of Fifteen campaign and Prog in the Park.

We also had a very good discussion about on what I can do as a volunteer for MacMillian Cancer Support.

Then later this week I will be meeting with the Volunteer Services Manager for  South and East of Scotland. 

Prog in the Park

While sitting writing this Blog, it doesnt seem that long ago when I first started to talk about holding a prog festival Kirsty. I actually first thought about having a prog festival in Dunfermline around about four years ago. Kirsty was and still is very supportive of me doing something like this. This was around the same time that the tumour I had surgery for in October 2015 was starting to grow. As the tumour started to ‘take shape’, my mind then focusing on my health issues during this time. I was then completely put off holding such an event. I knew that I had to focuss on my health and my family.

Then it was last year after the Afterglow – Genesis Tribute Band gig in PJ Molloy’s Dunfermline that I thought about holding a gig with Afterglow and other prog bands in Dunfermline. It was the day after the Afterglow gig and I was talking to Brian Neeson about the Afterglow gig. I have been friends with Brian via social media for a good few years now and the concept for what is now  Prog in the Park was born. 

Brian has put a lot into this event and I appreciate the time and effort that he has put into it. Thank you Brian for what your doing for Prog in the Park to be a success. My close mate Andrew McDonald (Duck) has been assisting myself and Brian ‘behind the scenes`for quite a while now. Andrew is our ‘tech advisor” and our ‘PA link’ guy. I really appreciate Andrew’s support and thank you mate.

The 12 hour festival is in aid of Maggie’s Centre’s and Sarcoma UK.

Prog in the Park is taking place on Saturday 6th April at The Glen Pavilion Pittencrieff Park Dufermline from 11:00 to 23:00.

The bands are: ALTRES; AFTERGLOW – Genesis Tribute Band; ALAN REED AND THE DAUGHTERS OF EXPEDIENCY; NODDY’S PUNCTURE – UK’s only ELP Tribute Band and STILLMARILLION – FISH ERA MARILLION tribute band.

Tickets cost £26 plus booking fee from https://ticketlab.co.uk/event/id/1844

Here’s Alan Reed with the brilliant Kingdom of the Blind to get you in the mood.

Please come on along, see some great bands and also help two great cancer charities.

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