How much can change in 12 days?

A lot.

I won't go into the highs and lows, the hope and despair as frankly, I can't be bothered. What's the point anyway?

Today we were told that there is zero chance for Dad. His lungs are too damaged, as well as the other problems he has.
We've been given 24 hours to say our goodbyes.

I'm numb really. Actually, I'm not. I'm angry. Not at anyone....just at the unfairness. I know the only certainty in life is death. I know that. Yet it hurts so much when it happens. He's not even gone yet and I'm talking like he's not here.
I had hope. Look where that got me.
I still have some sort of belief that the Docs are wrong, that he'll suddenly wake up. But I know I'm deluding myself. It's a coping things.

I'm angry because he's been through so fucking much. He's only 47. For over 2 years he's battled, fought, given everything he had....for what? To die in a hospital bed, not able to even have a last "good day".
He hasn't spoken for over a week. He's been sedated most of the time. He can sometimes hear us, but that isn't enough. I need to know he knows that I love him and I'll miss him. I need some acknowledgement that he understands. Maybe that's selfish. But if I could have anything right now (apart from a miracle) I'd want him to be aware and coherant while we tell him we love him, that we'll never ever forget him. I'm so proud of him.

Just thinking about not having him around is enough to tear my heart to shreds. I've never lost anyone before.....so I don't know how I'm supposed to react. All today we've all been trying to ignore it but it's there, all the time.

I'm scared for my family. We've been talking about his will and debts and allsorts today. There is soooo much to do when someone dies. There's no grieving time. Everything has to be done NOW.

I don't want him to die yet. He had so much more to give to life. But I guess it wasn't meant to be.

My poor mum. She lost her parents when she was my age, soon after she lost a daughter, then her sister a couple of years ago and now she's going to have to bury her husband.
If there is a God.....why would He inflict that on anyone?
I don't believe in all that myself, but I know mum kind of does.

Dad wanted to be buried. But the place he wanted to go isn't accepting anyone. So that's crap.
Do you know how much funerals cost? It's fucking disgusting.

My mind keeps wandering. To memories of childhood and the last few years and the final weeks.

I don't know how people cope with death. Especially not like his. I'm not saying his is any more disturbing....but it is to me. Apparently it's all down to acceptance. I don't think I'll ever accept the way it's happened.

I know it's personal pain and most don't give a damn, they didn't know him etc. I still feel stupid for writing all of this. But if I don't, it just goes round and round in my head until I can't take it anymore.

I know the next few days/months are going to be the hardest of my life. I'm thinking of not having a Birthday this year. It doesn't seem right. My little sister is 18 in April....it'll be hard for her.

There's so many things I'm sad about, stuff I can't even express at the moment. Maybe I'll look back on this blog in a few years and laugh at my idiocy.

I don't know if I'll write again. Maybe I will. Maybe I won't. I've closed my FaceBook and other online accounts for now. I can't be trusted to not say what's on my mind. People don't want to hear it.

It's amazing how many people avoid you when you're crying. I was sat outside yesterday and today, balling my eyes out. I looked a complete state. The amount of people that sat down on the same bench, only to move away after a few seconds was amazing. If you ever want to clear a room, start crying.

I'm disappointed in some of my closest friends. I shouldn't be. I feel guilty. But people say "I'm here for you, call whenever you want" or something along those lines. They know I won't call. That's not me. What happened to people calling me? It just seems it's mostly always me doing the calling, writing, texting and I've had enough. I'm just glad and lucky I have my family. It's not self pity either, I know I have some fantastic friends and I'm grateful. I just wish some would be a bit more pro-active in getting in contact at difficult times. I might just sit and cry, I might not want to talk about the situation....but knowing people care and can be bothered, that might just help right now. I dunno.
It's amazing the things you think about when something like this happens. Like I say, idiot.

Right well, it's way past my bedtime. If you've read and stuck with me, thank you.

Maybe I'll write soon.

Take care....and tell those close to you that you love them and care for them, as often as you can. Because someday, you won't have that chance anymore.

K

p.s I apologise for the swearing!

Positivity.

So today I visited Dad again. Another 7 hour stint in the hospital.

Today was much easier to cope with. He looks a bit better. I'm not sure if that's because I've got over the shock of seeing him yesterday. Mum reckons he looks the same.

Today the nurse shaved him and moisturised him as well as doing his mouthwash for him. She was really helpful and lovely. Such a contrast to what went on in September when he was in ICU.

It helps us to know he's being looked after well. They talk to him and tell him what they're doing, when taking temperature, blood, giving him things...everything. It's comforting to know they're treating him like a person.

Today they took him off the ventilator and sedation for a few hours. They don't like to leave the patients sedated for long periods and they wanted him to breathe on his own for a bit to monitor his output and to stop his muscles from wasting. He didn't wake up but they weren't expecting him to. He made a few facial expressions and moved his hands a bit.

They've found out what the bacteria is in his lungs so they're treating that and targetting it with the correct meds.
He's being sedated and put back on the ventilator tonight and they will take him off both for a few hours a day from now on.

We've been told it'll be "a long haul" in recovery and ICU, longer than last time.

He hasn't gone downhill though so far, so it's positive.

They're checking his para-protein levels and we'll have results in the next few days. That's to check on the cancer.

His bone marrow and platelets have taken a knock so they've topped him up with platelets today.

So in conclusion, the doctors have said he's still not "out of the woods yet" but he's stable. Not getting better but more importantly, not getting worse, at this stage.

I'm feeling a bit more positive today. I've been chatting away to him and have found it easier seeing him. I just hope he gets through this and will be able to have some quality of life, afterwards.

Take care,

K

You think things can't get much worse, then bam...they go and get worse.

My upset on Friday was caused because my Dad was transferred to the High Dependency Unit due to his difficulty with breathing. He was put on oxygen which was really helping him.

He has a very sore mouth and throat at the moment, one of the side effects of his cancer treatment. The nurse tried to feed him....even though he was being fed by tube. He couldn't talk to tell her not to feed him so got very agitated. Luckily my Mum arrived and told the nurse the history. Does make me wonder why they bloody have patient notes....if they don't bloody read them!

So anyway, he then needed to go to the toilet and is currently in nappies, but they'd taken it off and he hadn't had one on for a few hours. He got pretty upset that he'd soiled himself....he'd tried writing a note for the nurse to read but she couldn't understand what he was trying to say.
At that point he couldn't have a catheter or other stuff put in due to the high risk if infection due to his immune system being so low.

I went and saw him Saturday and he looked pretty ill. But throughout the day he started looking better, his sats were much better and things looked ok. He was still on oxygen but they were positive about his situation.

Yesterday my sister and mum visited him and again, he was looking and feeling slightly better. Things looked ok. He still wasn't talking but he was writing things...albeit with his right hand...he's left handed.

He did write that he thinks he's a waste of space and other such nonsense......damn near broke my heart.

But last night they moved him to intensive care as he was having real breathing difficulties.
It turns out he has bacterial pneumonia....pretty much life threatening. He also has something else in his lungs which they're trying to work out how to treat as they don't actually know what it is.
His heart isn't working properly, due in part, to last time in intensive care when he got septic.
His blood pressure is very low and they tried to re-position him today to see if that helped. It didn't.
He's not breathing at all on his own. He's on a ventilator, which is doing it all for him.

He's been fully sedated, so that he doesn't get agitated and put more pressure on his heart and lungs.

The doctor came round and told us to expect the worst. He told us to "prepare" ourselves.
How the hell do you prepare yourself? I'd love to know.
I don't think you can. When it happens, it happens but surely you have to have hope? Positivity? It may well be futile but without hope, what is there? I'm not giving up on him just yet.
He's a fighter, he's fought so hard in the last 2 years. I'm just so scared that he's used all his strength up in previous battles.
It doesn't help that he's malnourished. He's skin and bone, there is nothing else there.

For weeks he was telling the clinic that he was having trouble breathing, eating and food down. WEEKS!
They're supposed to spot the signs of various complications.....obviously not in this case.

Oh his consultant is all happy and smiley, while we're sat there crying, upset etc etc.....he joked it was his fault. Well yeah, part of the blame is on the clinic that was supposed to be monitoring him.
He was only admitted into hospital because we pushed for it!
Then it turns out he's actually pretty bloody ill. Yeah, we knew that!!!!

I'm so angry. I think I'm displacing my sadness and turning it into anger. I can't control the sadness but I can kind of control the anger.

Thing is, he had the treatment to prolong his life, give him some sort of quality, before the end.
And now, it's not even the cancer doing all this!!!!
So it may well be a waste.
I may never get to speak to him again.

I'm trying so hard not to see him in my head, when I close my eyes. As all I can see is him looking so, so ill. Skin, bone, tubes, machines, blood. I can't see him how he normally is.

I always hide my feelings when my family are around me. It's like this switch goes on and I can't show any emotion until I'm on my own or away from people I know. I went out to have a cigarette and phoned a friend. I couldn't stop crying. I suppose it was good for me, to let something out. But as soon as I went back in again, the switch flicked on. It was only as I was saying goodbye to him, on my own, that I cried again.
We've been told to speak to him, even though he's sedated. It's so hard to speak to someone who isn't really there. I didn't really know what to say so I talked rubbish. Maybe it'll help him to know we're there, if he can hear us.

I'm so scared. I'm embarrassed too. I'm embarrassed at writing this, letting out my feelings and feeling sorry for myself. Thing is, I'm not sorry for me. I'm sad, upset, distraught but I can get on with it...I have to. It's everyone else I'm scared and sad for. Especially my Dad.

It's probably good that he doesn't know what's happening at the moment.
I just want my Dad back. I want to be able to speak to him, see him smile, have a bit of a life before the end. I hope that happens for him.

I've rambled a bit, I'm sorry. All I ever do is apologise lately.

I'm going to bed. Been at the hospital from 10am this morning and feel drained. Hopefully I'll sleep.

Goodnight,

K

I don't want this life anymore. It's so selfish but I'd love to be able to have a new life. I've had enough of this one.

I'm quite lost for words, winded by more bad news and sadness today.

I've tried phoning a few friends, no one is picking up. I'm alone and lost. I've no idea what to do, say or anything. I'm hoping that by writing this it might take me out of the pity-pit I'm in and bloody well get on with it. Thing is, my family have been getting on with it for so long, there has to come a time when you just snap. Can't think, can't do anything except dwell on something that's happened.

Will explain later.

K

Hospitals....yuck.

So today I spent more than 6 hours at the building site that is supposed to be Southampton General Hospital.

I'm pretty angry actually. Most of the reason Dad went into hospital was because he wasn't eating, was being sick whether he'd eaten or not and was out of breath just talking. He was on anti-sickness tablets, along with all his other meds but they weren't working.

So, you'd think he'd actually be given something to eat, being in hospital because of malnutrition and all.
No. He'd had nothing since yesterday morning, and that was a quarter of a banana.

He was told to write a diary of everything he's been eating. Thing is, he thinks he's eating something when actually, it's less than a baby would eat. Bless him, he has been trying but the thing with the diary is, he'll put down that he had a banana, or some beans on toast...when in fact he's had a quarter of a banana and 2 mouthfulls of beans on toast.
So it's up to us, once again to nag him, practically force him to eat because no one is checking what he's eating....or whether he has even been given anything!

His bedding hasn't been changed since yesterday, when blood and other bodily fluids were spilled....so that was up to us too.

Quite rightly, we had a word with one of the Doctors. They wanted to put a tube down, to feed him in the short term. But I pointed out that that isn't going to help him if he just brings it all up again. Also, he needs to get used to eating....he's got a psychological fear of food and it's all very well feeding him by tube in hospital but when he comes home, it'll be back to square one again. So they've now said they'll monitor him more. But, they're chucking him out tomorow.

So basically, because it's not actually the cancer that is affecting him at the moment, we have to get on with it and see him weak, fragile, wasting away and not able to breathe properly, until they can find out what's actually wrong with him.

I know the nurses and doctors do a lot...and I know that most of them are excellent at their jobs. But the amount of times they've said something out of order or made my Dad look/feel stupid....it's just wrong. Of course, you can't say anything to them as he tells us after the event has happened.

God, just seeing him hurts. He can hardly talk....he can barely walk. He's out of breath after 3 or four words. He's skin and bone. He's in pain and he's had enough. Sometimes I wonder how much more he can take.
I know the whole family is feeling helpless and useless. It feels as if we're nagging him all the time...eat this, drink that. But it's because we don't want him dying just yet! He knows that, deep down.

The whole death thing hasn't really been brought up. Mum refuses to accept that it's likely to be sooner rather than later. My brother and sisters don't really want to think about it either. I don't want to think about it but every now and then, it pops into my head. People say you should prepare yourself. How do you prepare yourself? It's easy to think "oh next year I might not have a Dad" but analysing that and all that goes with it, not so easy.

It's like a time-bomb. The last 2 years has been a waiting game. That sounds awful really. But it's true. Dad's had so many problems to overcome that I'm scared that whatever comes next, he won't be able to fight it because he's used everything up in the previous battles. Every time I get a phonecall from my mum, my heart stops. Is that THE call? Is that it?
I can't bring myself to think about the end. I'm scared for my mum, my brother and sisters. I'm scared for me. I'm scared for him. It's hard, knowing the end is near but not knowing when it's going to happen.

There are some out there that think "I know we're all going to die one day, so why worry about when?"
My reply to that is, you don't have to watch your loved one suffer, waste away. You don't have to wonder how it's going to happen...will it be the cancer, or the treatment? Will he be in pain? The hardest thing is seeing the decline.

I'm rambling again. Sorry. I don't really have anyone I can talk to about it all....so this is my outlet.

Thanks for reading, I'll update again soon.

K :)

Emotions?

I'll be honest, I felt quite embarassed about posting a blog. It's so personal and can come across as "look at me". I guess I just want people to understand me. Maybe other people out there have had similar thoughts and feelings and can identify with things I write. Maybe not. I don't know.

Generally I'm pretty numb, emotionally. Some people see it as not caring when in fact, it's the complete opposite. I care so much that I can't express what I'm feeling.

I used to be a complete wuss. A cry baby. An emotional wreck. I don't know when that stopped. All I know is that now, it's very difficult to cry. Difficult to even think about things.

My Dad's back in hospital. He's constantly being sick, is very frail and isn't eating for fear of being sick. I was talking to someone the other day and we agreed that it's rarely the cancer that kills people, it's the treatment and aftermath!

Even now I'm finding it hard to assess my emotions and how I feel about things. It's just too scary to acknowledge things.

Sometimes I really want to talk about things. But I don't. Mainly because people don't really want to know how things are. It's an English thing....people ask "How are you?" instead of saying "Hello". They don't really want to know your life is falling apart, you feel like crap etc etc.
Nowadays I just say I'm fine...getting on with things.
I'm not though. My life feels like it's on hold. Waiting for something. I don't know what. Or maybe I do. I just don't want to say it out loud.

I don't have many real friends. Two live a few miles away and I see them every other week or so but we dont' really talk about bad stuff. The others live far away from me.....and I don't keep in touch as much as I should. I just find it hard to be "normal" and not being able to call because of having no credit most of the time, I just get on with things myself.
I'm a bit of a loner, I suppose.

I know my Dad has a shorter life than most. I know he's suffering. The treatment he went for was to prolong his life. But at what cost?

He currently has no quality of life. Hasn't done since September. Sometimes I wonder if he hadn't had the treatment, maybe he'd have had a better end. Like doing things he'd always wanted to do and enjoying the time left. Not like now, in and out of hospital....not going anywhere, not doing anything, not being able to walk or talk much.

Seeing him breaks my heart. I saw a picture posted on FaceBook of him, which was taken sometime last year. Looking at that and looking at him now, it's like it's not my Dad.
He's weak, frail, lost his hair, lost his weight and muscle. He's changed personality wise too. Everyone used to like my dad. He was chatty, bubbly, happy. Now, when he's home he sits on the sofa, watching tv all day. Theres no conversation. The only things we talk about are about what he wants for breakfast/lunch/dinner. This person isn't my Dad.

I don't blame him. Of course I don't. Sometimes I want to shake him and snap him out of it. But I also know it's physically impossible for him to get up off his bum and do something. I don't know how I'd feel in his situation. The same as him, probably.

Now I feel I'm rambling. I think I'll stop here for now. I may write again a bit later.

Take care,
K