The last 0.3 Mile of the Race

Two weeks ago today I had my LTR done. Today I had my stent removed.

The two weeks I found myself on the loopiest rollercoaster of emotions I could ever have imagined. Now, I am an emotional person anyway, but this….. Even this was a bit alien to me. As I have mentioned in recent blogs, I have been very lucky to receive huge amounts of support during my time here. But in reality, you can only really deal with the emotional nitty-gritty yourself.

I think my body purpousfully went into an ‘I need sleep – mode‘. During the times I had no visitors, where I could have endulged in the luxury of reading, or writing all I could really do was dose. I tried picking up a book but after about a page and a bit I was out. In retrospect, that was probably a pretty good thing. I think that was my body’s way of dealing with the stresses of the operation, the medication and also the anxiety I had been building up about all this for so long. And in a way, you could count this sleeping state as luxury. When does one ever have the chance to just lie there and do…….nothing?

What got me down quite a bit was this: I am generally a very active person, always on the go, always doing something. To then suddenly be confronted with the fact that for example the procedure of merely showering takes a good 2 hours and drains you at the same time is very demoralising. I wasn’t able to really move my neck which was a hurdle in itself. then making sure the trach is protected, and to begin with, the dressing that is taped to the doner site… All these little clusters of extra duties when all you are used to is turning on the tap and be in and out within 10 minutes is enough to make you not want to bother in the first place. And while I do place value on grooming myself, there were times I really had to motivate myself to get moving, or better said showering.

It is interesting to see how things work here in hospital. I have been an in-patient often enough to know what to tolerate and where to play up. I have to say, I have never really had to play up this much in hospital before. I know I am painting a picutre of being a monster patient. Trust me, there were situations where it was necessary. When you are in discomfort and don’t feel your best the last thing you want is to be manhandled in a way that gives the impression the nurse is dealing with a chunk of meat. On several occasions I had to push back a nurse for being far too rough – only to have to hear I was just too jumpy. And this was only one incidence.

Another interesting thing is questions. I honestly believe questions aren’t really welcome. They show too great a deal of independence and can lead to extra work for the staff. A further example: I have very difficult veins making me a nightmare patient for anyone who wants to even remotely think about placing a line. However the doctor who did my current one managed to find a superb one – unfortunately in an extremely awkward location, namely along the wrist by my thumb. No matter what you do there, it is uncomfortable. But even more so, if you try and push liquid through. Upon making it very clear that a) it was painful and b) I never tolerated bolus administration anyway (and let’s be honest, there are other alterntives of administering IV drugs which are far more comfortable) I got to hear ‘well if it is painful it needs to be changed‘ Upon asking ‘why doesn’t it hurt me then with a normal drip admin?’ I was simply told ‘I don’t know‘. (I am sitting here writing this with the drip actually running and it is posing no problem what so ever).

In fairness there are good staff here as well, but a good part of what I have witnessed all I could think was ‘really‘?

Now I am on the home strech. By the end of the week I will be allowed to leave this wonderful accomodation. How would I say to my son: ‘Two or three more sleeps‘. These two weeks have been a bit of a personal hell for me, one that I hope I will only have to go through this once. But now I am already feeling better. As I have mentioned, the stent is out. This is already allowing much more freedom of movement in my neck, decreasing all the build up tension of the past fortnight. With a smaller trach I can already make out some nasal breathing which is fantastic. I know that it is nearly over now. But, will this last 0.3 mile of the race be the hardest, just like it usually is?

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