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Why? Who? What's this blog about? It's about MEEEE!

Being a Widow

My experience of dealing with grief as a widow

Astrocytoma

About Jane's brain tumour journey: Astrocytoma.co.uk
 

BBC Newsnight discusses the Liverpool Care Pathway. And I cry.

27 November 2012

Tonight the BBC's Newsnight has a discussion on the Liverpool Care Pathway. The Liverpool Care Pathway is highly criticized by shitty news papers such as the Daily Mail who have no clue what they are talking about and yet still feel they have a right to send wrong and dangerous information in to the world that is untrue and misrepresents the fact. The Jobbing Doctor describes quite accurately how I feel about the Daily Rag and their 'journalism' in relation to the Liverpool Care Pathway: "The Daily Mail, in its own unique way, is a bilious hate-filled rag full of sensationalism and bias. Similar to the Sun, but for those with GCSEs, with slightly fewer pictures." But I digress.

The Liverpool Care pathway is a protocol that helps medical staff when patients are actively dying. It provides space for all active treatment to be revoked and focus ONLY of patient comfort and symptom control. This may (notice: MAY) include withdrawing artificial hydration. it does NOT say people should not be given drinks if they can still swallow. Nor does it say people should be dehydrated to death.

The main problem is not the Liverpool Care Pathway itself but the implementation of it. So communication is vital. But also, people are not supposed to be on the Liverpool Care pathway for weeks. So normally you will not be on it for weeks. But mostly just for days or even hours sometimes. It is for people who are ACTIVELY dying. Not just terminally ill. But when the body is physically shutting up shop. So if you don't give someone food and drink for days or weeks, it is not a good thing. But if they only have hours or a couple of days left, then it is not their main cause of death. It should be reviewed every few hours......

We could argue Jane was on it too long. She took about 12 days to die once in the hospice. By the time she went in to the hospice, she already was dehydrated for about 5 days due to no longer being able to swallow. So yes, Jane died of dehydration whilst on the Liverpool Care Pathway. In her case, the Liverpool Care Pathway hastened her death. And maybe she could have been given IV fluids. Maybe the Liverpool Care Pathway was not applied appropriately in her case. Because the fact that she took so long to die proves her body was not yet actively dying from the brain tumour. So the lack of fluids killed her. In a way, you could say she died because of the Liverpool Care Pathway. Which was wrong. I did not know this at the time and I had the impression Jane was pain-free.

But this may sound callous and harsh, she was going to die soon. I could have prolonged her life for weeks by giving her fluids and food through a tube. She would have slipped in to a coma eventually. But that might not have been for weeks. Or months. And she might have been able to communicate with me during that time. But most likely she would not have been able to make much sense of the world, hydrated or not. So we would have had a few more weeks but there is no way to measure what kind of quality of life that would have been for a young woman, fully incontinent, bed-bound, unable to understand the world around here or hold conversations of any kind.

I still think about it. Did I do the right thing? Probably not. I should probably have fought harder for getting her hydration sooner. The thing that is upsetting me more and more is the idea that I did not talk to Jane about it enough. I very quickly assumed the role of carer and probably very soon took over the decision making. I perhaps took away her right to decide too soon and did not put enough effort in trying to find out if she was still able to have thoughts about it.

But it was the way it was. She lasted longer than the doctors anticipated once she came to the hospice. And the problem with dehydration is that you can not, after a week of absolutely no fluids, suddenly decide to give loads of fluids again and say: oh, maybe this patient is not actually dying just yet, let's re-commence fluids. By then, someone may already be in organ failure so you are kind of on a path of no return.

No point in revisiting things. It wasn't as if she died unnecessarily from a curable disease. I think the best I can say is that she died earlier than she should have due to implementation of the Liverpool Care Pathway. However, the Pathway protocol itself ensured that her death was painless.

But then again, that is what thought then, and still think now, when I knew nothing about these things. The more I learn at university, the more angry I get. I did not know better. But doctors back then did, and did they do the right thing? Did I ask them enough questions?

I am afraid that learning more at university will make me re-visit and re-think the whole thing. And I am so scared that because of knowing more, I will have some belated trauma about Jane's death. I don't want that. I have accepted it and, mostly the way it went. If gaining knowledge about it means I am going to doubt every decision that was made back then, I prefer to remain ignorant.

PS: For those who are really interested in what the LCP *really* says, you can read the entire LCP document guidelines here. You will see that there is nothing wrong with the pathway itself and that the problems are its implementation.
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Music Review by Truly Indie: Corinne Lucy - Black

25 November 2012

I just need to mention this for a minute. Because I like this very much. My friend Corinne got a lovely review  for her song Black.

"It seems more and more common these days for young female singers to either "over sing" and lose sight of melody, or put on some kind of fake accent in a blatant parody of the popular singer of the day.

Every now and then something comes along and takes you completely by surprise. Someone with the imagination and talent to buck the trend... Enter Northampton's own Corinne Lucy..."

Read the rest here: Truly Indie: Corinne Lucy - Black

Now I might be biased because I think Corinne is pretty amazing, especially because she records all her songs in her own home studio, but it is nice to see other people agree. Here is the finished production of the song Black:

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And here is an older acoustic version of the same song.



Like what you hear? Check out Corinne's website at corinnelucy.com. Or her Facebook page. For more videos, there is also her YouTube Channel.

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On working. Kind of.

08 November 2012

So I have been at university for over a month now. So far the lectures have all been interesting and I really am enjoying learning stuff about how people communicate on different levels, how the body works and how disease impacts on the body. How a problem with your breathing can lead to heart failure. That kind of stuff. And some philosophical things too.

Ask yourself this: What is a definition of Healthy? Is it being free of disease? What about mental illness then? Is it being happy? What if you have diabetes that is fully under control so it does not have any impact on your life (think Steve Redgrave who won a bunch of gold medals as a diabetic)? You would say you were healthy eventhough you have a disease.

That kind of thing fascinates me.

On the down side, I still have not finished the assignments we were given a month ago. I now have only 2 weeks left to finish them and I am properly freaking out. I am struggling greatly with not knowing exactly what is expected of me. I am not the only one it seems so that is some kind of relief. Discussing it with others only makes it more confusing because people all seem to have a different idea of what is being asked of us. It appears that, as usual, I am thinking about this far too deeply, with others spending only a couple of hours on writing theirs and me spending hours and hours and hours reading interesting articles, only to then feel I have so much information that I can not longer make sense of it.

One of the biggest problems I have is not knowing what is expected of me. My course places a big emphasis on reflective learning, research and deciding for myself where the gaps in my knowledge are. This is an extremely confusing way of learning for me as I have no idea what is asked of me. It makes is nearly impossible for me to plan my time because if I come across a gap in my knowledge that needs more time, I have not planned for this and my schedule goes out the window. The fear of this is paralysing and makes it very difficult to concentrate on other work that I could be doing.

Furthermore, at the start of modules, we are told what the assessment will be but we are not (yet) told what exactly we are supposed to do for that. So they might tell us: a 3000 word essay to be handed in in 3 months on Topic XXX. I assume that we will be given more information later on in the module. But for me, this causes great panic. I need to know what I am supposed to do right away so I can give it a place in my head. Again, I panic and can hardly focus on the tasks at hand, due to fear of missing vital information about work that lies months ahead. This causes me great distress and makes me feel I am unable to handle the course even though I am perfectly able to reach the required standards.

I would benefit greatly from a tutor or study skills tutor who would help me by explaining exactly what is asked of me, right from the start of the module. So that I can relax in the knowledge that I have made a plan and that things are under control and that I am not missing anything vital.

I have bitten the bullet and have applied for Disabled Student Allowance. I don't know what this can do for me but apparently they might give me money (yay) from which the university can pay a personal tutor who can sit with me and help me organise things. It was very depressing to have to go to an interview and say: I have a learning disability, please help me. I am afraid that I will now have a sticker on my head that says: DISABLED STUDENT. I have never really seen my ADHD as a disability. It is just a part of me that I hate very much but hey-ho, there you have it. I guess I might as well ask for all the hep I can get and then see what is useful to me eventually. I might find things easier in the second year. No idea.

So here I am at 6pm in the university library, trying to do work. Instead I procrastinated and wrote this blog instead. Duh.

On a positive note: I went to Poole last week to see Girlfriend play a lovely little gig. Poole is a mere 3 hours driving from here. Luckily I did not have to drive. It was very lovely and of course Girlfriend was great. As usual. We have booked ourselves in to a lovely little old pub/B&B for New Year's Eve. Just the two of us, in front of a log fire in the old pub, totally ignoring time, probably falling asleep before midnight. It is in the middle of the Yorkshire Dales, almost in the middle of nowhere. Gorgeous. I can not wait.

Trois Vallees 2006 with Caz, Jane, me and Claire.
This morning, as I was watching The Gadget Show on Dave, I got a bit sad. They were snowboarding and testing gadgets. I felt a pang of sadness. I won't be snowboarding this year. I guess I could go if I really really wanted to but I don't want to go alone. Also, I am lazy. There is no driving force behind organising it so I am not doing it. And I won't have time. And I won't have money. And if I get injured when at university, I will have to drop out of the course until I can attend lectures again. I don't want to take that risk. It made me really sad. I fucking LOVE snowboarding. I would be extremely sad if I never did it again. Maybe I can sneak in to Milton Keynes indoor ski slope some time over the Christmas period and touch some snow. Ugh, totally unexpectedly just teared up. Friend walked in and said: what are you doing? I said: Looking through my pictures to find a nice one of me in the snow to go with this blog post. And suddenly I was all weepy...

Now I have procrastinated long enough to write this blog post. I must do some actual work.
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