THE NEW REGIME

IT’S JUST NOT THE SAME

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:

ANTI-BIOTICS

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.

POSITIVE ATTITUDE

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.

FINALLY

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

Kev

Published by One of Fifteen

I am 1 of only 15 people worldwide diagnosed with maligant myopericytoma. Life threatening surgery in October 2015 at the Royal Infirmary Edinburgh saved my life. I am now trying to find the #14others diagnosed with this rare form of cancer. Please help me. https://about.me/kevin.oneil

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