Well I'm finally back at home after spending a few days at my mum's house. The bad news just seems to keep coming, with every little glimmer of hope quickly being snatched away again.
My step dad is still in hospital. He had his chest drain inserted on Tuesday, and as yet they have not been able to clear his lungs in order to seal the space. The fluid was pouring out initially, and all was well as his breathing was easing, but then his blood pressure began to plummet so they had to stem the flow of fluid, in order to allow his bp to recover. The only problem with that was that he was collecting fluid quicker than they could drain it. At one point it was estimated that he was collecting around 3 litres of fluid around his lungs over a 24 hour period.
We had a bit of an up last night as the flow slowed dramatically, and I stupidly allowed myself to think that maybe, just maybe he would be able to have the talc procedure soon. Should have known better. They took him to x ray this morning, and it turns out that the reason the flow had slowed was because the drain had become dislodged-he still has a fair amount of fluid built up around his lungs. For reasons unknown to me they can't just reinsert the drain-they are leaving him without it over the weekend and will give him a new one on Monday if he needs it (but as there was fluid there when he got x rayed then its safe to say he will need a new drain). It remains to be seen whether they can clear all the fluid, so they can do what they need to do so he can start treatment.
I don't really know why I'm so desperate for him to get treatment though. I know they cant cure him, I suppose I just want him to have a little more time living. At the moment he is just stuck in a hospital bed with nasal prongs topping up his oxygen, and he's not even properly with it. He's utterly exhausted and as weak as a kitten. Yesterday he thought I was my Daughter, during the night the nursing staff were concerned as he was babbling incoherently-they asked if he knew where he was and he gave them his home address. He is on restricted fluids at the moment and my Mum and I tried explaining to him how much he could have. Rather than hospital issue jugs of water he has 500 ml bottles, so we put 2 on his table and said that in a day he can have those 2 bottles plus a cup of tea each time the tea trolley comes around. After half an hour of explaining it in the simplest of terms he still didn't understand. He said hello to me about 4 times today, even though I was sat right next to him the whole time I was there, and he just babbles away to himself, not even proper words half the time. He has always been a talker, but even the old Navy days stories have stopped now. He goes between rambling, fidgeting and fiddling around with things on the over bed table thingy, just picking things up and putting them down again.
Probably the worst thing is that nobody is telling us anything. We only found out about the chest drain issue because Mum went off to ask someone when she noticed it had gone. Is it wrong of me to think that a phone call at least to keep her informed might have been an idea? There is open visiting on his ward between 1100 and 2000, and there is somebody there with him the entire time (he HATES being alone, so me, mum and my step sister are taking it in turns), yet there never seems to be a doctor around.
So yeah, I've spent the last few days at my mums, partly for company for her, and partly just to help out so she can relax a bit without having to worry about cooking dinner/walking the dog etc etc. Plus I just wanted to keep an eye on her. She's coping amazingly well so far, but the cracks are beginning to show and I just wanted to be there for her. I only decided to come home today because I am completely and utterly exhausted, despite sleeping well while I was there. I need a little time to myself as I know if I don't get it soon I'm gonna start to lose it, and if I do that then I will be no help to her at all.
I just honestly don't know how long I can carry on like this. I know I have to, but as the days pass it's getting more and more difficult to find the strength to do it. This little corner of the internet is helping as I can at least let things out here (it may well be jumbled/nonsensical but I just let the words flow), work are being incredibly supportive (from a personal point of view, as well as the trust wanting to do what they can to help), and I am also lucky enough to have friends supporting me too. Somewhat surprisingly is the fact that the person who seems to know exactly what to say (or what I need to hear) is someone that I have never actually met. Just somebody that I follow on twitter (friend of a friend type thing). We've tweeted each other a few times since we've been following each other, just general chit chat kinda stuff, but over the last couple of days their messages to me have made me smile and cry at the same time. Both very needed, and both very welcome.
I am hugely grateful for all the support-it gives me the strength to be there for my mum apart from anything else. I just need to find the same kind of support for my mum, so next on my to do list is to contact Macmillan/Marie Curie and to have a chat with my GP to see what help is out there. At some point my step dad will be going home, and shes going to need all the help she can get both physically and mentally. I'll do what I can, but I know I have my limits, and I know she feels bad for 'burdening' me with it (her words, not mine I hasten to add).
So another day draws to a close and I have to say that I am grateful for that. Will soon be time to crawl into my bed, and 'forget' about it all for a few hours, then see what tomorrow brings.
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