When I consider the four L's of the blog title I think of them like this. Life obviously covers everything like a big circle round it all, but within that there is something akin to a colour chart where the other three overlap in certain ways (some of which I understand and some I clearly don't - there's even moments where they all come together and illuminate).
Today I want to talk about the most difficult one for me to be absolutely open about, which is love. Now I know I have spoken about my love life on here before but it has been an editorialised version, mostly because they're not just my stories to tell and I feel just rude sharing too much of that, and anyway that's not really what I want to go into. I'm more interested in talking (again) about the more Platonic kind. Anyway, the actual love life can be summarised quite quickly when you boil it down - self sabotage and a some bad luck. The other stuff is probably more interesting.
This last week I went to the transplant clinic down in the Freeman in Newcastle and, after going through the whole rigmarole of the testing procedures to make sure that things are going ok as far as they're concerned, the reception I got from the doc at the clinic when I walked in to his office was amazing - he was so very thrilled to see that I was not only doing well but compared to when he last saw me, when they were mostly convinced that I was either going to shuffle off this mortal coil or at the very least still be utterly dependent on oxygen, that he positively beamed. It was every bit as boring a clinic as I had hoped and had only very small changes to make to my drug regime. This pleased me massively. Such a quick exit allowed me to get up to the ICU ward and to see my friends before lunch when everything goes a bit crazy. As fate would have it the first two docs that I saw were the ones who had been most pessimistic in my time down there and I grew to heartily dislike them, but to their enormous credit they were absolutely bloody thrilled that I walked in to their ward unaided.
Then I got to see my people. The ones who not only cared for me in a medical sense but properly cared for me. It's a bloody good thing I enjoy a good hug as I was getting plenty of them and the chance to talk to so many of these people whom only a few had even heard me speak was just fantastic. Doctors and nurses and physios came over for a chat. They even phoned Suzanne, who had been my physio from day one but was now working across town at the RVI, for a brief chat. It was just amazing. Some of these people have become genuine friends and it was especially good to see Nikita, who is the first nurse I remember looking after me and Johnny, who spent a lot of time with me and even came on the transfer up to Glasgow with me. The doc who woke me up on the day I was under anaesthetic for my trachae insertion just to tell me the score in the Celtic game against 'them', Kevin, was also on shift so made a point of stopping by. The whole thing was just magical.
At this point I want to highlight something. It is the update my sister Janine put up for this time last year. Not only should we think about what can happen in a year but what actually happened in 6 months as it was nearly 6 months to the day that I exited hospital and I haven't been in as a proper patient since. I know these dates so precisely because of the arrival of my niece Mia btw.
"It has taken me a while to figure out how to write this post....... we have known for a wee while now that things have not gone as well as we would have expected with Paul. There have been many ups and downs with his post transplant recovery. The positive things are that there is no apparent signs of lung rejection and after the issues with the narrowing airway, the stent seems to be doing its job effectively.
One of the main problems is the fact that he still requires to be ventilated via tracheostomy and there have been issues getting him off the ventilator. The main problem is that there has been damage to his diaphragm which affects his ability to breath on his own without assistance. The consultants between the freeman and the rvi have had many meetings regarding the best care required for Paul and the forward plan is that he will remain at the freeman and continue with his rehabilitation until they can liase with ventilation service in Glasgow and get him moved back closer to home. We are still unsure of when this is going to happen but hopefully sooner rather than later. There is a possibility that Paul will not get off the ventilator at all because of the damage to his diaphragm so he may be on home ventilation permanently. This is a long way down the road and the main focus at the moment is getting paul under the care of the ventilation service in Glasgow and take it a day at a time with his rehabilitation getting him fitter and as healthy as possible to get him home whatever it takes. Paul, and us all, are understandably gutted by this but he still feels that having the transplant was the best option as at least we would not still be thinking 'what if?' And he has had the opportunity many people do not get. I want to thank everybody again for their continued support through all of this, when Paul gets back to Glasgow he will definitely be looking for some visitors and think he needs some better chat than ours!!!!!! I will still be doing updates on here but I feel that I have been a bit repetitive as things have slowed down so won't be doing it every night now so please don't worry if you have not heard from me in a few days. Night all x"
As you can see things weren't going so well. I was destroyed by this stage, mentally and physically. The break they gave me to try and strengthen me up before moving to Glasgow served only to lead me into the hardest period of the whole time. Feeling like nothing was progressing in any way just led me to some dark places and even the family commented that putting a pillow over my and smothering me would have been a relief. I was suffering, and so were they.
That things turned in my favour after my move is no slight on the team in Newcastle. It was a matter of my body utilising time to recover after the serious trauma of the original surgery. The failed attempts previously to get off the ventilator were doomed to that end because the nerves just weren't firing to get the correct muscles operating. That I was frustrated with some of the doctors was only in what I perceived to be a defeatist attitude rather than anything else. In some way it felt they regarded me as an inconvenience, especially on ward rounds. They were not great at communicating what I understand now to be their own frustrations that they couldn't fix things.
What has this all to do with my opening ramble? It is true that the physical stuff needed time and it would have probably happened just the same in Newcastle or Glasgow but in Glasgow I had more access to friends and family that I didn't have in Newcastle. As I have suggested from my visit to clinic last week the folks down there became my friends but I needed the fully formed team that I had essentially banned from coming down to see me when down there. As I've explained before I found the notion of any of them spending a whole day in transit only to just maybe see me awake for a matter of minutes at most to be too upsetting for me to allow it. It was entirely selfishness on my part but I was fine with it as a decision. Mostly.
When back home I was happier to allow them in as time was less of a constraint and they could take some time with me and hopefully get something out of it. This panned out to be true, not least because it wasn't that long before I did start getting better. Improving physically gave me something to talk about for the first time in a long while and that was a massive deal. Chatting about progress, no matter how small, was incredible.
At this point I had no shortage of offers of visitors, which was great, but often they didn't materialise. People had good intentions, of that I have zero doubt, but that is what the road to hell is paved with. What I needed were actual shows and they were a bit thinner on the ground. At the time, and for many, many months after I was very bitter about this (and I'm sure it's a subject I will re-visit with specifics) but if anything, my 40th birthday party showed the lengths that some will go to to come and see me when the opportunity presents itself, and I have made the decision that I need to focus on that than to look at the fact that the odd person didn't make it. There's been enough negative stuff in the last little bit of my life without inventing some to throw on top of it. Even considering the ones that didn't make it there were more than enough decent reasons - it was two days before Christmas after all.
I have loads of things lined up with some very old friends and have decided it's about time I organised things with friends from the various places I've lived all around the country too. The support I had from them when things were bad deserves repaying too. I've even reached out to people that I perhaps wasn'tso friendly with when I was younger on the premise that none of us are the people we were when we were younger. You can never have too many friends in my opinion. Of course the flip side of that may turn out to be true and people I did like when I was younger may turn out to not be the people I want to spend time with but let's give them that opportunity first.
I want to make sure in amongst all this that the main topic of conversation isn't me. I know that it's unavoidable in some ways but let's not let it dictate absolutely everything. Even I get bored talking about me eventually after all.
