The last few days have been a complete roller coaster both in and out of pain, and also progress and hindrance.
For me the battle has been one of day and night, and the difference that you get in empathy, care is pretty steady but being this I’ll, alone most of the time, empathy actually counts and will make the difference between pain feel and sleep, or in pain and hurting.
There is not a lot to do in hospital except, look, watch, listen and observe, some cannot, I am sadly surrounded by ‘people’ who are not in a good way compared to me, I admit I am making progress, very bloody slowly and I’m sure after last nights fun, sometimes progress gets knocked back a lot by those you hope are putting you first.
Anyway let’s get in to: “My Observations”
I am presently on a good ward, but there is a big difference between night and day, and not just the good and the bad, I may even think of the correct term but all will become clear.
On my left I have a poor old soul who is on a very long journey, we talk often, alway s say hello each morning, but my feelings are this, I feel that ‘He’ feels that he is terminal, but as yet I have not managed to get a definite to confirm this, I also think that everyone around him is really trying their best to keep him ‘chipper’ so to speak, something that you feel would be a normal thing here in hospital, he is very tired though, some days you reall can tell that he has had enough, sometimes this changes minutes by minute, he has family and friends that visit, but you cannot help but wish that it was more often, he really brightens up when he gets visitors, and it drops so quick when gone.
He does give over the good fight, always giving be battle talk so to speak, but sometimes you hear him in his sleep and he sounds so low.
There are a few good nurses that spend a little more time with him than maybe they should, the nice side of nursing, the bad side is when you hear him in pain, like me, always when they are moving him, sometimes you hear the annoyances in their voices when the patients do do things fast enough.
I’ve learnt myself through this stay that quite often, simple tasks that are such an easy task like rolling on your side can be a real killer, in my case this task not only takes a nice day of zero pain, into instant 8-9/10 pain within just one little movement, you have not completed the task yet and may not have even made a much of a visible move, but the pain button is hit and you need to relax and calm down, something that is now out of your control.
This is when you see some nurses visibly give up with you, other times any movements can be so helped with a little help, but this rarely happens, but it can often mean the difference between a task taking 30 minutes and the same task taking 10 minutes with a lot less pain.
Some nurses even shout at you, telling you to hurry up, zero empathy, it’s even if this is just a way to earn some money, and not that they do it because they care.
So sadly my poor friend in the bed on the left is sometimes not getting the care he deserves as a human being.
I truely hope that things are not so terminal for him, he does seem to want to fight.
Now the one on the right is a very strange case.
He at least has had confirmation of the fact, but that said, sometimes it sounds like he has just been told he has cancer and is automatically assuming that it is terminal.
His younger family have been in and many a tear has been shed, but in between his pain bouts, he is very clued in.
He seems to have a foreign partner who is very controlling, yesterday there was a phone call fo him from the NHS (cannot help but listen sometimes through thin curtains), she wouldn’t let him speak to the person even though you could tell that he wanted too and was answering for him, there are also the very strange way that she talks to him, maybe I’m wrong but you just get the feeling that she’s trying to cut his younger family out of any inheritance and it really sounds so cruel sometimes.
I was saying he was diagnosed with cancer, I picked up yesterday that he even has not gone through chemotherapy yet, maybe he is reading terminal without even fighting for it.
I suppose we all fight cancer in our own way, I have never let it prey on my brain at all, for me the cancer is invisible, inside somewhere, unseen, so therefore I cannot do anything about it, where as this PEG for instance is something I can see and feel, and we hate each other, I am more worried about this PEG than the cancer that causes it to be there.
So in between the observations that you cannot help but make when sat in a bed, you also, see and hear the joys and wows of the staff.
This is where you see a Hugh difference, between ‘Light and Dark’, ‘Night and Day’.
It does not effect everyone, but it’s like a good portion of the night team really don’t care to even show you empathy, and during the day, the day teams are just so difference, you may see the odd member that just does not care at all, but most are brilliant.
Take me and tonight, this wound site for the PEG was healing, bloody slowly but certainly getting better.
Prior to the change of shifts, it was very carefully cleaned, and dressings changed.
Things were good.
Later I felt I was getting soaked in smelly stuff, It looks as though the drain had leaked again but from the PEG site instead, at this point I was asked to vacate the bed so that they could clean it, I asked for some pain meds and after a while they were administered and waited a while.
Now when I take the morphine it kicks in around 10 minutes in and all is fine.
20 minutes in and I am feeling a lot of pain, I just cannot work out if they are telling me it’s morphine and it’s something else, or they are just short dosing me, but always during the night shift, I feel a lot of pain after morphine has been injected into my arms, never happens at all during the day!
Now pain is easily 9/10, I’m starting to cry, I have to get myself vertical in bed, no help at all and the somehow lift myself up on to a walking frame and then walk to the toilet, no help, and somehow without moving my stomach muscles at all because each movement there takes me from 9/10 to 12/10 and a pain level I would nor ever see anyone else go near.
I eventually get to the toilet and collapse on the seat, again no help, they are too busy cleaning my bed – obvious priority.
It took me 30 minutes of constant crying to relax enough to start thinking about getting myself off the toilet and back to bed.
So I get up, stagger to the door, in obvious pain, oh and one handed having to carry the drain pipe and bag along with the PEG feeding tube to stop them from being caught on something, just outside the toilet I was screaming for help, which eventually turned up, not knowing what to do.
No don’t get me wrong here, I had not told them what I wanted them to do but, surely if you see someone in front of you, in a hell of a lot of pain, you know that they have a big tramour to there chest, straight into the stomach muscles, they also should know that any even minor movement hurts of a level that incapacitating, and they can visibly see that you cannot support yourself.
Yet they don’t know that you need support, even a kind word would have been nice, eventually I told the I needed help getting too the bed, one was quite supporting, the other gave me their hand that offered no support at all.
I was taken to the bed, but I really don’t know how to get from standing to horizontal in as painless a way as possible, I was just told to turn round and sit down, I could not feel the bed, the bed was not raised to meet me, the drop near killed me, again screaming out in pa.
It seemed up to me to lay down and get my legs up, very little advice and help was offered,
Eventually I am on my side, this was my choice, but at least ‘I was not falling any further, I ended up crying myself to sleep.
NO EMPATHY AT ALL.
I woke up at 1:20 am, tired and in a lot of pain, fluid on the bed from the PEG site – I AM NOT GOING THROUGH THAT AGAIN!
Twice now they have done this to me, twice now they have set me back, twice now it’s damaged me, treatment like this ‘Never’ happens during the day shifts, presently 6/10 and waiting for daytime to give me morphine, I really am pissed off with all the pain, most of it generated by night staff telling you to do things that they should know that you cannot.