A purely self-indulgent, stupid post, coming up!
So, it's been nearly 7 months since my Dad passed away. His headstone is now up at the cemetery. That was an ordeal in itself. It sort of made it all final....I can't describe it really. I know he's gone and I'll never see him again, apart from in my head and photo's but it was the final thing that confirmed it all.
I'm a bit ill at the moment and when I'm not feeling right, I get a bit emotional.
Most days I'm okay and can smile at memories of him, remember him how he'd want to be remembered.
But some days it's like a physical pain in my chest and I can only see his eyes open, for the final time when the life support was turned off. It's that which haunts me. Along with seeing him in his coffin, more than a week after he died.
I still have the feeling he didn't want to go. He didn't want us to give up on him. Others say that him waking up was his way of saying goodbye. I still don't know. I truly hope he didn't suffer. Though looking into his eyes that final time, it's hard to imagine him not suffering. Knowing we were all there to say goodbye for the last time while he was unable to communicate.
I still don't speak of him much. I don't talk about my feelings or how I feel about the way he died. It still feels too big. Maybe I should be over it by now, or at least on the way.
I feel bad when I cry in company of others, I don't want them feeling uncomfortable or annoyed with my emotional outbursts. Usually I have to just take myself away and be on my own.
Like I said, most days I'm okay. I think of him everyday and can be happy and normal. But days like today just bring me back to square one.
I know I have great people in my life. My boyfriend (oh how I hate that word!) is supportive and kind but sometimes I wonder whether I'm too damaged, broken. Friends and family say it's okay for me to be emotional but it's not okay, not really. It's not okay for me to lay myself open. I have a hard time telling people my feelings (not just sad stuff, things that should come naturally, just don't, for me - it's a big thing to tell someone how I feel), even those close to me. Sometimes just a hug will suffice. Other times I need to take myself away, on my own. Which is what I did today. But then, when I'm on my own in this situation, I crave company. Silly!
I've cried for most of today, which is probably a good thing. I think I needed to let it out to get past some of the feelings I've been having. No one can do anything for me, sometimes I don't want advice or to talk about it. Sometimes just having someone near is enough. Other times I need to be by myself, to grieve or cry or wallow or whatever. Some may see it as self pity, maybe it is. Maybe it's not. I don't know. All I do know is that I'm dealing with it to the best of my capabilities.
I've had a lot of dreams of my Dad, lately. Then I wake up and feel a huge sadness. Not a sadness for me, but for him. He had so much to give. I know I'm not the only person in the world to be affected by someone's death. I know death is a part of life. But I've never known anyone close to me who's died. I still don't know if I'm reacting in the wrong way. I miss him so much. I watched him die, while they turned off the life support and for 2 years before that, seeing him weak, frail....wasting away and everything else that happened....and I couldn't do a damn thing about it. All I could do was be there for him. I felt and still feel useless.
I have regrets. I feel guilty for things. The last time Dad was able to talk (2 weeks before he passed away), Mum and I had a silly disagreement and I cut my visit to the hospital short. If I'd have stayed longer, I would have had longer talking to him.
I feel guilty for just accepting what the doctors advised, that turning off the life support was the best thing for him.
I was at that hospital, nearly every day, every time he was admitted and I feel as if I didn't use that time wisely. None of us admitted to the fact he was likely to die....not even the doctors.
I had so much hope. He had so many plans.
I went to the cemetery today. It really is a lovely spot. Everytime I've been, it's been sunny. I sit and talk to Dad and often feel like a right loony :-D But it helps me.
My sister and brother-in-law are doing the Great South Run in memory of our Dad and to raise awareness and funds for Myeloma UK. If you can, please sponser them. The link is http://www.justgiving.com/run-redpath-run/
Anyway, that's how I'm feeling today. I feel a complete idiot for writing all this but it has helped a lot. Tomorrow will be different :-)
Remember, let those you care about know that you care about them, as often as you can.
Take care.
(In edit: I feel much better already. I guess sometimes bearing your soul helps!)
Tuesday, 22 September 2009
Wednesday, 15 April 2009
Not written for a while....
My dad passed away 23rd February at 8pm. That'll be why I haven't written for a while.
I've been trying not to write about it here or anywhere as it was all a bit too raw and wouldn't make for happy reading!
This isn't going to be happy reading and is a little self indulgent, I apologise. I feel it's time to talk about things and so I am doing just that :)
Not a day goes by that I don't wish he was still here. Or wish that things were different and he never got ill in the first place. That's not the reality though, so I guess wishing and wanting don't really get us anywhere. It's false, not reality.
At first I was angry, so angry. I have my reasons and it wasn't just because he died. It was the fact that he didn't get the chance to do some of the things he wanted to do. The treatment was supposed to give him a little time to enjoy some life....in the end it was the treatment that killed him. On his death certificate it states he died of Clostridium Difficile (C.Dif) and Pneumonia.
It wasn't even the cancer. He was in remission.
He didn't die naturally. They had to turn off the machines. But then I suppose that is natural in a way as without the machines he wouldn't have been here anyway. Difficult trying to weigh it up in my head.
They discussed with us on the Sunday (22nd) the fact that he wasn't improving and that we should say goodbye, but they would continue to support him and care for him until his body gave up. That didn't happen in the end. We went to see him Monday and they said they were switching everything off because his body was giving up. I asked if he'd be asleep (sedated) when they did it and they said he'd definitely not be aware of what was happening.
We were given about an hour to contact the rest of the family, to say goodbye. In the end there were 16 of us in the small room.
This is so hard to write but I've not spoken about it to anyone, nor even thought about it. It feels too 'big' to deal with. Everytime I think about it I have to block it out, do something, think something else. I know I'm delaying dealing with it and that isn't good but I can't seem to deal with it.
I'm going to try to write it.....it might help.
So, there were 16 of us around him, all said goodbye, kissed him and stood/sat waiting for them to start turning things off. It took approx half an hour for him to go.
The last 10 minutes will stay with me forever.
He woke up.
He knew we were there, yet couldn't speak, like he hadn't for a couple of weeks.
His eyes were wide and he kept trying to move. People were comforting him and saying hello and other things I can't remember.
All I remember is his eyes, so sad but not giving up.
He struggled and tried to sit up.
All I remember thinking is that we're killing him. We're giving up on him. I know that isn't true, I know nothing else could be done.
It was his body that was ruined, not his mind.
I just feel, even now that he didn't want to go. He didn't want to die. I'm angry and upset that I was told he'd be asleep, not aware.....but he was.
I cannot get that out of my head. I can't close my eyes at night without seeing his yellow eyes open, him knowing we were all there, saying goodbye when his mind was ok, he seemed ok, like they'd got it wrong and he'd live afterall.
He died with his eyes open. They didn't close them until we left. I broke down and had a panic attack, couldn't breathe. Got myself together and went outside. Some family came out too. All I got was "You'll have to support your mum now, she needs her family" and "Your poor mum" etc etc. My dad had just died and who cared about how my sisters, brother and me were feeling?
We went back in when they'd taken all the tubes and stuff out and sat with him for a while, not quite believing he'd gone.
I haven't been back to the hospital since. I don't think I could go back there.
I went to see him 4 times, in the funeral home. He didn't look like my dad. But he was dressed in his own clothes, we'd chosen them. I wrote a letter and put it in his pocket.
We had the funeral two weeks after he went. It was going to be on my Birthday on the 3rd March but I said no. Mum was all for it.
It took a lot of arranging, vast sums of money and a bit of arguing. My mum wanted to have it all her way, which maybe we should have let her do but we wanted to help, be a part of it and just do something. I did the music for the church. We had Pachelbels Canon in D to enter, Barbers Adagio for Strings for during and Vivaldi's Four Seasons - Winter to end.
I also did the cards to go on our flowers. And helped with financial stuff and informing companies/people of his death.
It was a beautiful service in a beautiful church and so many people there. I did a reading which was the following:
I know I didn't look at anyone throughout the whole service, I don't think I could have done it if I'd known how many people were there.
The burial was the hardest. I'd never been to a funeral before so it felt especially hard having to bury my dad, not having any previous 'experience' as such. That sounds funny, saying that!
I've been to the cemetery a lot, since. It's been sunny every time. He's in a lovely place with a beautiful view. He always wanted to be buried there.
Family relations have been strained. I'm taking the brunt of my mums moods. Trying to carry on as normal but it's so hard. Some days I feel guilty for laughing or whatever but I know he wouldn't want us to be sad and unhappy forever.
I have the 'public' persona, the one that is okay and can handle anything, doesn't get down, has a laugh, doesn't care that friends seem to have disappeared, isn't grieving and most of the time, that is me. But there are times when I just want to scream or hide away or just shout at anyone about anything!
Truth is, most days I find it hard even getting out of bed, wondering what the point is. I know things will get better as time goes on but I also know it'll never feel right and there'll always be a dad shaped hole in my life. We've had a few family occasions since dad died and they've been very hard, each one of them. But we get on with it. You have to :)On the whole, in general, I'm okay most of the time (once I'm out of bed :D ).
I have a wobbly moment most days but I remember my dad, think about him, smile and move on.
I'm most disappointed in people in general. They expect you to be over it, buck up, sort yourself out, straight away. Or they don't talk to you as they don't know what to say. 2 months on (nearly) and people still can't talk to me about it or anything really. It's okay for people not knowing what to say, I don't either. It's hurtful though. I'm not feeling sorry for myself. The way I see it is that you can't rely on anyone except yourself. And it's personal pain. I don't expect anyone to understand or know or even care, afterall most of my friends didn't know him. But its the silence or trying to skirt the issue that gets to me. He meant something to me, he still does. Just because he's died, it doesn't mean people should stop speaking about him or tiptoe around it, family included!
Some of my friends have been wonderful, others not so. But I guess that's life and you learn not to get caught up in stupid things like that.
The most surprising thing to me is the kindness of strangers. People I don't know, trying to let a little light into my life. Kind words, thoughts and niceness. I really appreciate it too.
So anyway, I've now learned that the only person I can rely on, is myself :)
And that's that. There's probably tons more I've forgotten about but I think that'll do for today :)
Thank you for sticking with me and if you're one of those strangers I was talking about, thank you, sincerely :)
If you're one of the friends who haven't abandoned me, thank you, from the bottom of my toes :)
Take care,
K :)
I've been trying not to write about it here or anywhere as it was all a bit too raw and wouldn't make for happy reading!
This isn't going to be happy reading and is a little self indulgent, I apologise. I feel it's time to talk about things and so I am doing just that :)
Not a day goes by that I don't wish he was still here. Or wish that things were different and he never got ill in the first place. That's not the reality though, so I guess wishing and wanting don't really get us anywhere. It's false, not reality.
At first I was angry, so angry. I have my reasons and it wasn't just because he died. It was the fact that he didn't get the chance to do some of the things he wanted to do. The treatment was supposed to give him a little time to enjoy some life....in the end it was the treatment that killed him. On his death certificate it states he died of Clostridium Difficile (C.Dif) and Pneumonia.
It wasn't even the cancer. He was in remission.
He didn't die naturally. They had to turn off the machines. But then I suppose that is natural in a way as without the machines he wouldn't have been here anyway. Difficult trying to weigh it up in my head.
They discussed with us on the Sunday (22nd) the fact that he wasn't improving and that we should say goodbye, but they would continue to support him and care for him until his body gave up. That didn't happen in the end. We went to see him Monday and they said they were switching everything off because his body was giving up. I asked if he'd be asleep (sedated) when they did it and they said he'd definitely not be aware of what was happening.
We were given about an hour to contact the rest of the family, to say goodbye. In the end there were 16 of us in the small room.
This is so hard to write but I've not spoken about it to anyone, nor even thought about it. It feels too 'big' to deal with. Everytime I think about it I have to block it out, do something, think something else. I know I'm delaying dealing with it and that isn't good but I can't seem to deal with it.
I'm going to try to write it.....it might help.
So, there were 16 of us around him, all said goodbye, kissed him and stood/sat waiting for them to start turning things off. It took approx half an hour for him to go.
The last 10 minutes will stay with me forever.
He woke up.
He knew we were there, yet couldn't speak, like he hadn't for a couple of weeks.
His eyes were wide and he kept trying to move. People were comforting him and saying hello and other things I can't remember.
All I remember is his eyes, so sad but not giving up.
He struggled and tried to sit up.
All I remember thinking is that we're killing him. We're giving up on him. I know that isn't true, I know nothing else could be done.
It was his body that was ruined, not his mind.
I just feel, even now that he didn't want to go. He didn't want to die. I'm angry and upset that I was told he'd be asleep, not aware.....but he was.
I cannot get that out of my head. I can't close my eyes at night without seeing his yellow eyes open, him knowing we were all there, saying goodbye when his mind was ok, he seemed ok, like they'd got it wrong and he'd live afterall.
He died with his eyes open. They didn't close them until we left. I broke down and had a panic attack, couldn't breathe. Got myself together and went outside. Some family came out too. All I got was "You'll have to support your mum now, she needs her family" and "Your poor mum" etc etc. My dad had just died and who cared about how my sisters, brother and me were feeling?
We went back in when they'd taken all the tubes and stuff out and sat with him for a while, not quite believing he'd gone.
I haven't been back to the hospital since. I don't think I could go back there.
I went to see him 4 times, in the funeral home. He didn't look like my dad. But he was dressed in his own clothes, we'd chosen them. I wrote a letter and put it in his pocket.
We had the funeral two weeks after he went. It was going to be on my Birthday on the 3rd March but I said no. Mum was all for it.
It took a lot of arranging, vast sums of money and a bit of arguing. My mum wanted to have it all her way, which maybe we should have let her do but we wanted to help, be a part of it and just do something. I did the music for the church. We had Pachelbels Canon in D to enter, Barbers Adagio for Strings for during and Vivaldi's Four Seasons - Winter to end.
I also did the cards to go on our flowers. And helped with financial stuff and informing companies/people of his death.
It was a beautiful service in a beautiful church and so many people there. I did a reading which was the following:
1 Corinthians 13I just about got through it. I don't remember much of speaking it.
The way of love.
If I speak in the tongues of men and of angels, but have not love, I am a noisy gong or a clanging cymbal.
And if I have prophetic powers, and understand all mysteries and all knowledge, and if I have all faith, so as to remove mountains, but have not love, I am nothing.
If I give away all I have, and if I deliver up my body to be burned, but have not love, I gain nothing.
Love is patient and kind; love does not envy or boast; it is not arrogant or rude.
It does not insist on its own way; it is not irritable or resentful;it does not rejoice at wrongdoing, but rejoices with the truth.
Love bears all things, believes all things, hopes all things, endures all things.
Love never ends.
As for prophecies, they will pass away; as for tongues, they will cease; as for knowledge, it will pass away.
For we know in part and we prophesy in part, but when the perfect comes, the partial will pass away.
When I was a child, I spoke like a child, I thought like a child, I reasoned like a child. When I became an adult, I gave up childish ways.
For now we see in a mirror dimly, but then face to face. Now I know in part; then I shall know fully, even as I have been fully known.
So now faith, hope, and love abide, these three; but the greatest of these is love.
My dad was a man who was always and will always be loved.
I know I didn't look at anyone throughout the whole service, I don't think I could have done it if I'd known how many people were there.
The burial was the hardest. I'd never been to a funeral before so it felt especially hard having to bury my dad, not having any previous 'experience' as such. That sounds funny, saying that!
I've been to the cemetery a lot, since. It's been sunny every time. He's in a lovely place with a beautiful view. He always wanted to be buried there.
Family relations have been strained. I'm taking the brunt of my mums moods. Trying to carry on as normal but it's so hard. Some days I feel guilty for laughing or whatever but I know he wouldn't want us to be sad and unhappy forever.
I have the 'public' persona, the one that is okay and can handle anything, doesn't get down, has a laugh, doesn't care that friends seem to have disappeared, isn't grieving and most of the time, that is me. But there are times when I just want to scream or hide away or just shout at anyone about anything!
Truth is, most days I find it hard even getting out of bed, wondering what the point is. I know things will get better as time goes on but I also know it'll never feel right and there'll always be a dad shaped hole in my life. We've had a few family occasions since dad died and they've been very hard, each one of them. But we get on with it. You have to :)On the whole, in general, I'm okay most of the time (once I'm out of bed :D ).
I have a wobbly moment most days but I remember my dad, think about him, smile and move on.
I'm most disappointed in people in general. They expect you to be over it, buck up, sort yourself out, straight away. Or they don't talk to you as they don't know what to say. 2 months on (nearly) and people still can't talk to me about it or anything really. It's okay for people not knowing what to say, I don't either. It's hurtful though. I'm not feeling sorry for myself. The way I see it is that you can't rely on anyone except yourself. And it's personal pain. I don't expect anyone to understand or know or even care, afterall most of my friends didn't know him. But its the silence or trying to skirt the issue that gets to me. He meant something to me, he still does. Just because he's died, it doesn't mean people should stop speaking about him or tiptoe around it, family included!
Some of my friends have been wonderful, others not so. But I guess that's life and you learn not to get caught up in stupid things like that.
The most surprising thing to me is the kindness of strangers. People I don't know, trying to let a little light into my life. Kind words, thoughts and niceness. I really appreciate it too.
So anyway, I've now learned that the only person I can rely on, is myself :)
And that's that. There's probably tons more I've forgotten about but I think that'll do for today :)
Thank you for sticking with me and if you're one of those strangers I was talking about, thank you, sincerely :)
If you're one of the friends who haven't abandoned me, thank you, from the bottom of my toes :)
Take care,
K :)
Sunday, 22 February 2009
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!
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!
Tuesday, 10 February 2009
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
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
Monday, 9 February 2009
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
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
Friday, 6 February 2009
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
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
Thursday, 5 February 2009
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 :)
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 :)
Wednesday, 4 February 2009
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
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
Friday, 30 January 2009
The story so far...
Welcome to my blog.
My Dad, aged 47 has Multiple Myeloma. The link provides more info on the condition but here are some basics:
He was diagnosed over two years ago. Since then he's had numerous treatments, hospital stays and an uncertain future. He's been in remission twice, the first time was for only 2 months.
I'm not really sure how to start this as it's going to be more like an essay than a blog. On the whole, it'll be honest, open and sometimes harsh, as well as a bit of heartache and other bad stuff thrown in. Sometimes, I'll write inane rubbish, just 'cos I'm like that :D
It was suggested to me that I write a blog/diary to express my thoughts and feelings as I have no other outlet to discuss such matters. So, here's me, taking advice (for a change) and laying myself open.
Before I start, this isn't some oh woe is me thing....not at all. It's just me, trying to sort out things in my head, letting "stuff" out, even the deepest, darkest things that I daren't think about.
Ok, let's start.
In just over two years, my Dad's gone through: Chemotherapy, Radiotherapy, at least 30 pills/meds a day, stem cell transplants, bone marrow biopsies, physiotherapy, lumbar punctures, a tumour behind the eye, unable to walk, septic shock, liver damage, short term diabetes, kidney damage, bone damage, pins and plates in his arms, mental health issues, MRI/cat scans, daily injections, heart damage, C Diff, lots of other 'minor' things and last of all personality damage.
Prior to that, he was fit-ish, worked hard, was a good laugh and was fair and a good dad.
He was diagnosed (after several mis-diagnosis') with MM as he had broken his arm lifting something, so they investigated more because it was unusual.
The first year he had Chemo and all the other stuff associated with it. It was a difficult time but we kind of got used to it and although it's hard, not knowing how long we had left with him, he wasn't ill as such, we knew he had cancer but the treatment all went well, he didn't suffer too badly.
After his own stem cell transplant failed to work, he was given the option of a donor transplant. His sister very kindly offered and luckily, was a match. In August last year, 2008, he underwent the transplant.
He was due to be in isolation for 6 weeks, meaning that he was in a room to himself, in a cancer ward at Southampton General Hospital.
Things didn't go quite according to plan as he managed to go into septic shock, meaning his life was very much in danger.
He was transferred to Intensive Care where he spent 6 weeks. His bowels, kidneys, liver, lungs and heart were all suffering damage. His skin was peeling off, his fingers were like thick sausages. He has tubes coming out of him everywhere, it was very scary for him, and us.
We were told, each week, that he may only have 48 hours left with us. That was pretty heartbreaking and very difficult to come to terms with. I only told two people at the time - my close friends. I texted, rather than called as I was a mess. Now, I wish I'd spoken to someone....but what's done is done.
During this time Dad was very confused, mumbling rubbish and having disturbing dreams that he thought were real.
We knew something wasn't right with him. Apart from the body stuff! His speech was very slurred, he was making strange noises and most of the time we didn't understand what he was talking about.
After a few days, he was convinced he didn't need to be in ICU. He insisted he wanted a tv but it being ICU, he couldn't have one! So I went and got his portable DVD player for him. We chose a disc and he tried putting it in the player and changing the sound, but he couldn't do it. Later on, he was distressed about other things he'd thought had happened.
Looking back now, some of it is quite funny. But at the time, it was seriously worrying.
The nurses in ICU didn't know him like they did in the cancer ward, so they thought that was just him.
We tried telling them, over and over again, that's not my Dad/Husband....but they refused to listen.
In the end, we spoke to his cancer consultant who decided to do some brain scans.
It turned out, he had a swelling on his brain. They didn't know if it was blood or fluid. We were told that if it was blood, there was no way they could operate and he'd be like this forever.
If it was fluid, they could possibly drain it out or leave it to sort itself out.
Weeks later, we were told it was fluid and it had corrected itself. Those nurses soon started listening after that!
It was particularly painful that he refused to talk to me, or even look at me as he thought we'd had a row (we didn't, it was one of his dreams) and I wasn't talking to him. I was at the hospital every day for 3 months, yet he barely knew any of what was going on.
No one told him how ill he was, as the doctors didn't think he'd understand. He became restless and angry and because of the pressure his heart and rest of his body was under, they sedated him. Because of the other drugs and meds he was being given, the sedation had to be administered to exactly the right level....which was hard to get right.
He'd often wake up mumbling, then try to get out of bed. He thought he was fine and didn't need to be there.
One such time, I was on my own with him in ICU and he pulled himself onto me and tried to climb out of bed. For an ill man, he was bloody strong! That was horribly scary but we laugh about it now.
Other things happened, him being treated worse than a dog by some of the nurses...etc. But I won't go into all that right now.
Once he was stable, he was back in the cancer ward. He was bedridden but his speech and normality were starting to return. He couldn't remember anything of what he'd said or did while in ICU but we were just happy to have him stable and well, within himself. We didn't tell him anything of his condition as the consultant didn't want him distressed. He had realised he'd lost a lot of time though and was getting distressed, so in the end we had to tell him.
Time came for him to start getting up and about, he still had a long way to go but his kidneys/heart/lungs etc were improving.
The next stumbling block (literally!) came when he couldn't walk. He couldn't balance, he couldn't stand....nothing.
Slowly, after 2 months he was able to walk, with the aid of a frame and/or person. The physios came to see him 2-3 times a week to take him for small walks along the corridors. He wasn't allowed anywhere else as he was meant to be in isolation.
Soon, he was allowed home for a day.....a day turned into overnight, then it was 2 nights. They wanted to ease him back into coming home. He'd become kind of "institutionalised" according to the consultant and they didn't want him rushing into things too quickly.
Christmas week came and he was allowed home for Christmas Eve & Christmas Day but had to go back to hospital Boxing Day.
Boxing Day he was discharged :D
Since then, he got a little better. But then went downhill, rapidly.
The next blog will be the aftermath of all the treatment, the family rows/bickering, the daily struggle and basically the stuff no-one tells you about.
I'm not sure how my family/friends might take to this blog if they ever see it. I hope no one is offended or upset about this or any forthcoming posts. I just want to be honest and I know there are others out there, who have been through similar and know that the actual reality is far from what is shown in the media or what people perceive.
I'm sorry if this has gone on a little long. I have found it quite therapeutic to put things into words though.
Reading it back, it's more facts than emotions, but emotions can wait....there's plenty of time later, for me to tell you all about those! :D
If you've come this far, I thank you.
Kay Bee :)
My Dad, aged 47 has Multiple Myeloma. The link provides more info on the condition but here are some basics:
- MM (Multiple Myeloma) is an uncommon cancer that develops in around 3,000-4,000 people in the UK each year.
- Myeloma accounts for 15% of blood cancers and 1% of cancers generally.
- It is most common in people aged 65 and over.
- It is a cancer of the bone marrow.
He was diagnosed over two years ago. Since then he's had numerous treatments, hospital stays and an uncertain future. He's been in remission twice, the first time was for only 2 months.
I'm not really sure how to start this as it's going to be more like an essay than a blog. On the whole, it'll be honest, open and sometimes harsh, as well as a bit of heartache and other bad stuff thrown in. Sometimes, I'll write inane rubbish, just 'cos I'm like that :D
It was suggested to me that I write a blog/diary to express my thoughts and feelings as I have no other outlet to discuss such matters. So, here's me, taking advice (for a change) and laying myself open.
Before I start, this isn't some oh woe is me thing....not at all. It's just me, trying to sort out things in my head, letting "stuff" out, even the deepest, darkest things that I daren't think about.
Ok, let's start.
In just over two years, my Dad's gone through: Chemotherapy, Radiotherapy, at least 30 pills/meds a day, stem cell transplants, bone marrow biopsies, physiotherapy, lumbar punctures, a tumour behind the eye, unable to walk, septic shock, liver damage, short term diabetes, kidney damage, bone damage, pins and plates in his arms, mental health issues, MRI/cat scans, daily injections, heart damage, C Diff, lots of other 'minor' things and last of all personality damage.
Prior to that, he was fit-ish, worked hard, was a good laugh and was fair and a good dad.
He was diagnosed (after several mis-diagnosis') with MM as he had broken his arm lifting something, so they investigated more because it was unusual.
The first year he had Chemo and all the other stuff associated with it. It was a difficult time but we kind of got used to it and although it's hard, not knowing how long we had left with him, he wasn't ill as such, we knew he had cancer but the treatment all went well, he didn't suffer too badly.
After his own stem cell transplant failed to work, he was given the option of a donor transplant. His sister very kindly offered and luckily, was a match. In August last year, 2008, he underwent the transplant.
He was due to be in isolation for 6 weeks, meaning that he was in a room to himself, in a cancer ward at Southampton General Hospital.
Things didn't go quite according to plan as he managed to go into septic shock, meaning his life was very much in danger.
He was transferred to Intensive Care where he spent 6 weeks. His bowels, kidneys, liver, lungs and heart were all suffering damage. His skin was peeling off, his fingers were like thick sausages. He has tubes coming out of him everywhere, it was very scary for him, and us.
We were told, each week, that he may only have 48 hours left with us. That was pretty heartbreaking and very difficult to come to terms with. I only told two people at the time - my close friends. I texted, rather than called as I was a mess. Now, I wish I'd spoken to someone....but what's done is done.
During this time Dad was very confused, mumbling rubbish and having disturbing dreams that he thought were real.
We knew something wasn't right with him. Apart from the body stuff! His speech was very slurred, he was making strange noises and most of the time we didn't understand what he was talking about.
After a few days, he was convinced he didn't need to be in ICU. He insisted he wanted a tv but it being ICU, he couldn't have one! So I went and got his portable DVD player for him. We chose a disc and he tried putting it in the player and changing the sound, but he couldn't do it. Later on, he was distressed about other things he'd thought had happened.
Looking back now, some of it is quite funny. But at the time, it was seriously worrying.
The nurses in ICU didn't know him like they did in the cancer ward, so they thought that was just him.
We tried telling them, over and over again, that's not my Dad/Husband....but they refused to listen.
In the end, we spoke to his cancer consultant who decided to do some brain scans.
It turned out, he had a swelling on his brain. They didn't know if it was blood or fluid. We were told that if it was blood, there was no way they could operate and he'd be like this forever.
If it was fluid, they could possibly drain it out or leave it to sort itself out.
Weeks later, we were told it was fluid and it had corrected itself. Those nurses soon started listening after that!
It was particularly painful that he refused to talk to me, or even look at me as he thought we'd had a row (we didn't, it was one of his dreams) and I wasn't talking to him. I was at the hospital every day for 3 months, yet he barely knew any of what was going on.
No one told him how ill he was, as the doctors didn't think he'd understand. He became restless and angry and because of the pressure his heart and rest of his body was under, they sedated him. Because of the other drugs and meds he was being given, the sedation had to be administered to exactly the right level....which was hard to get right.
He'd often wake up mumbling, then try to get out of bed. He thought he was fine and didn't need to be there.
One such time, I was on my own with him in ICU and he pulled himself onto me and tried to climb out of bed. For an ill man, he was bloody strong! That was horribly scary but we laugh about it now.
Other things happened, him being treated worse than a dog by some of the nurses...etc. But I won't go into all that right now.
Once he was stable, he was back in the cancer ward. He was bedridden but his speech and normality were starting to return. He couldn't remember anything of what he'd said or did while in ICU but we were just happy to have him stable and well, within himself. We didn't tell him anything of his condition as the consultant didn't want him distressed. He had realised he'd lost a lot of time though and was getting distressed, so in the end we had to tell him.
Time came for him to start getting up and about, he still had a long way to go but his kidneys/heart/lungs etc were improving.
The next stumbling block (literally!) came when he couldn't walk. He couldn't balance, he couldn't stand....nothing.
Slowly, after 2 months he was able to walk, with the aid of a frame and/or person. The physios came to see him 2-3 times a week to take him for small walks along the corridors. He wasn't allowed anywhere else as he was meant to be in isolation.
Soon, he was allowed home for a day.....a day turned into overnight, then it was 2 nights. They wanted to ease him back into coming home. He'd become kind of "institutionalised" according to the consultant and they didn't want him rushing into things too quickly.
Christmas week came and he was allowed home for Christmas Eve & Christmas Day but had to go back to hospital Boxing Day.
Boxing Day he was discharged :D
Since then, he got a little better. But then went downhill, rapidly.
The next blog will be the aftermath of all the treatment, the family rows/bickering, the daily struggle and basically the stuff no-one tells you about.
I'm not sure how my family/friends might take to this blog if they ever see it. I hope no one is offended or upset about this or any forthcoming posts. I just want to be honest and I know there are others out there, who have been through similar and know that the actual reality is far from what is shown in the media or what people perceive.
I'm sorry if this has gone on a little long. I have found it quite therapeutic to put things into words though.
Reading it back, it's more facts than emotions, but emotions can wait....there's plenty of time later, for me to tell you all about those! :D
If you've come this far, I thank you.
Kay Bee :)
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