March 2006

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days outcomes

If we do nothing Dad will have around 3 months to live, if we give him treatment he will have about 12.  It’s all a matter of time. We have to decide.   I am hoping that if the swelling goes down he will get a bit more functioning, so the 12 months will be worth it.  If we can talk with him, instead of talking to him I would want as much of that as I can get.  But if the trauma from the surgery goes away and he is still the same, then it would probably be better to just let him go.  No matter what we do he is going to die.
 

He told me today he didn’t want me to come in and see him anymore.  If he really means that I have to respect it, I just don’t know if he means it.  It hurt so much, I know he could just not want to be a burden, but if he really doesn’t want to see me, if he is rejecting me, I don’t know how to handle that.
 

I have 10 days to write an essay worth 20% and I don’t have a clue what I am doing.  I may have to drop out of the paper.  If I can’t do it then I can’t pass.  It might mean I take two papers in the second semester or put things off another year.  My lecturer is sick so she couldn’t spend much time with me. I don’t know what to do about that, I can’t seem to get a grip on the essay to even get started.  Will hopefully talk to her on Monday.
 

I feel like I have no support, everyone is telling me I’m wrong, I shouldn’t be feeling what I am feeling, that I need to be different, to think differently, to feel differently, to do differently.  I was told I was too sensitive, I have been told to just move on, to get over it, I have been told not to care.  Today Bob said I was just being hyper vigilant about what was happening, it felt the same as being told I was wrong and over reacting.  We felt attacked and alone and we yelled at him for that.
 

I am broke, I have spent too much on coffee and wine and quick food.  So financially I’m a mess.
 

I really need and want to go through to Queenstown next week.  I hope I can work that out.

Not good news

They said the operation went well.  I thought that meant that it was successful, that dad was going to be ok, and maybe even get better.  Today my brother was told at best Dad has 12 months to live. It’s going to kill him.  My Dad is going to die… soon.  I was there when my brother came back with the news.  I did my best to support mum, but I needed to come home too, to be alone.  This is breaking my heart.

 

 


 

What type of Fae are you?

My brother has arrived.  So I have been relegated to not needing to know what is going on and when I rang to find out how everything was, my mother gave me the quick disinterested brush off.  I shouldn’t complain, it gives me a break but fuck it, it is hard to be shut out of the situation.  Of course in my mother’s mind I am not really family so what else could I expect.  My mother has family with her now, they can support each other, I am hardly needed.  And of course when he goes home in about a week, it will be back to me.  Although I am hoping that by then a lot of the pressure will be off, we will know hopefully what Dad’s prognosis is going to be. 

 

Mum said last week that an old friend of the family wanted to ring me to see how I was going.  This was after telling my mother I was a little annoyed at all the friends and family in Dunedin not one had come to see how I was coping with it all.  My mother said she wanted to make sure I realised she didn’t ask this friend to give me a ring, that it was her idea and all.  No problem with me on that area.  Well this friend rings, and it seems her idea of support is using me for information.  She said she was really concerned about Dad but knew my mother was under a lot of pressure so didn’t want to add to it, so if I didn’t mind would it be ok if she rings me to get information over the next little while.  I don’t have a problem doing that, but well it is hardly what I would call support, or at least support for me. 

 

The support thing is a big deal for us right now.  We have virtually none.  Sure there is Sean and Bob, but they are here professionally, they are part of my recovery and seem to be looking at this in that way, they want me to challenge my beliefs, maintain my boundaries and all that stuff.  Now I am not saying that hasn’t got its place, I am actually grateful they are responding that way, because that is their role.  But it is hardly a place I can go and feel sorry for myself, or simply grieve about my Dad.  Friends who know about my past, the relationship we have with our partners, the details of my life, well I don’t feel a hell of a lot of support from them.  Mostly it seems what I get is that challenge of why are you giving them support they don’t deserve it.  This might be true for them, indeed I understand why they would be saying those things.  But that isn’t support, that means I have to constantly justify my actions rather than just talking about what I am going through.  When we got those types of responses on RQ when I wrote about what was going on I wrote something rather assertive about it.  I don’t know if it was heard, there were responses to it but right now I can’t face those emails because I think I would go off if I have to read again I am wrong for supporting my family in this.  David said he is there for support and yes it was wonderful having him here this weekend.  But there are a couple of issues, one this relationship is new and I don’t want to scare him off, to lose the building of a relationship because disaster has hit.  And he doesn’t really know the details of my past so I can feel some people getting irritated when he doesn’t get why some of this is hard for us.  And as I said family and family friends seem to have forgotten I even exist.  So yeah I do feel I am dealing with this mostly on my own.  David I am grateful for though.  He does hug me when I need it and sits quietly and listens when I rage.  But I don’t want to overload a new relationship. 

A hard day

I saw Dad today.  Fuck it was hard.  He is much more confused, distressed and bewildered that I had thought he would be.  I couldn’t feel the usual connection with him.  I felt like a stranger in the room.  Now most of that is probably because of the tumour and his anxiety and fear.  But it was heartbreaking.  The whole thing wasn’t helped by that feeling that I wasn’t really part of the family, more sitting outside looking in. 

I managed to be part of the conversation with the doctor though.  It seems the tumour is in the back left side of the brain.  It is in the brain not on it, which I don’t really get the difference, although to me it sounds worse.  But it does mean that Dad isn’t having seizures, they seem to occur when the tumour is pressing on the brain.  The tumour is very large and seems to be growing quickly, so much that the centre of it appears dead because it has used up its supply of nutrients.  The place of the tumour is affecting Dad’s language and comprehension abilities, which was really noticeable today, and probably affecting his sight on the right side. For those of you that don’t know the part of the brain that processes the information from the optical nerves is at the back of your head. 

The doctor explained all this, although it seemed to just freak Dad out a lot and he was relying on Mum.  A decision was made though, that on Wednesday he will have surgery.  The doctor will use an ultra sound device to work away at the tumour and get as much as possible out without damaging the healthy part of Dad’s brain.  This is big surgery, it will take about three hours.  There are risks, risks that the blood vessels might be damaged, risks of infection, and a risk of death.  But unlike what my brother told me on the phone when he said death was a high possibility the doctor said that these risks were about a 10% chance of happening, so although a risk, not as high as I was thinking.  They will then test what they evacuate.  I don’t know how helpful this will be, the doctor says he hopes to make him better and avoid making anything worse.  I don’t know if it will save his life, I don’t know if it will give him back his mental capabilities, but we all know that if we do nothing then this tumour will continue eating away at his brain and he will slowly lose more and more of himself.  He may need radiation therapy but at least that isn’t as hard on the body as chemotherapy. 

Today’s been hard.  It was hard to see Dad like that, it was hard to deal with family dynamics.  When I went out to have a smoke I got angry at Mum’s friend Joyce who was also down.  She expected me to take her up and show her when Dad was, but I just gave her directions and went outside.  Later she made some biting comment about getting lost.  I was barely holding everything together.  Hell when I went outside and someone asked me for a lighter I couldn’t stop crying.  I ended up calling Bob and he sat with me.  I remember waiting for him to come out and desperately trying to work up the courage to ask him to touch me, to stroke my arm, or hold my hand.  It felt so wrong but I knew we needed it.  He came out and sat down beside me and lightly rubbed me across the shoulders.  I was grateful that he did it, and that I didn’t need to ask. 

I found out on Friday.  My dad has a brain tumor.  He’s going to die.  He’s probably going to die.  Don’t know all the details until Tuesday when the doctors go over the scan, but from what dad and mum has said, it’s  large and invasive and there’s probably going to be nothing more for anyone to do.

There is still no news about Dad. It seems no one knows what is going on, the doctors don’t have a clue what is happening and why Dad is the way he is. This is frightening Dad and Mum is turning to me for support. I’m feeling really worried for Dad and trying to be a good daughter. But I admit it is hard. Mum rings and wants my support, cries down the phone to me and I try to listen, to offer her what I can, and yet at the same time there is all these emotion. We spent a week hating her, being angry at her and dad, it is really hard to shut that off. I know it isn’t showing, or even if it did my mother is too caught up in this crisis to notice which is a good thing, but it is stirring all sorts of shit up for us. I wonder if this makes me a bad person that I am not just concentrating on Dad, and being there for Mum, that I can’t just put aside all those other emotions and thoughts.

She says things that spark off this furious anger. They don’t even seem to be big things. They might even be overreactions on my part. She said the other day that she still believes what is happening to him is medical. I wanted to respond, so you are worried he is crazy like me. I mean from everything that she has told me it does sound like he has had some neurological event, it isn’t that he suddenly woke up one day and lost his marbles, it isn’t delusional thoughts, it’s memory and information processing that is happening. It reminded me of what Badger was talking about in therapy last week. How my mother has never asked, never wanted to know what we are dealing with. There is some relief in that but also anger. She doesn’t care, she doesn’t want to know. I read about families dealing with mental health problems of one of their members, I read the information out there about the consumer movement in mental health and how families should be part of the process. I understand the importance of that, the support that they can bring, and how any disability can affect all members of a family. But with my mother, she doesn’t want to know. Even when we were at our sickest, when we were in and out of hospital constantly, barely able to function, all she ever said was she wished we would just kill ourselves and get it over with so it wouldn’t keep screwing with her life. My mother doesn’t have a clue what we are dealing with, she doesn’t understand or want to hear about our anxiety issues, about our fears of leaving home, about the dissociation. Of course she won’t want to hear about the multiplicity or the post trauma, but those other things can happen without abuse, our dissociation, agoraphobia, anxiety disorders, they can occur just because. But when we try to explain it, like explaining how we need to drive ourselves places, how we can’t take a bus, she brushes us off. My mental health disability is a secret shame in her mind and she will continue to work to keep it at that.

Mum makes hints about me coming up and staying with her whilst this is going on. We are avoiding even acknowledging the hints let alone having to say no. It wouldn’t be a good idea. I don’t mind doing the good daughter routine by phone or if Dad comes down to the hospital here, but to pack up and stay with her for a couple of weeks. Well it wouldn’t be a good idea. It also triggered someone pretty badly last night and we had a series of flashbacks about our mother’s behaviour when our grandfather was dying of cancer. I really can’t go into details about that as it isn’t my memory, it isn’t something I experienced and it is up to the person to write about it if or when she feels comfortable. But it was horrific and although I am sure my mother wouldn’t do the same thing now, the similarities are too close.

I just got an email from my Queenstown man. Just saying he is missing me and thinking of me. We were talking last night (we talk nearly every day on the phone or online) and I was venting a little bit about the whole Dad situation and having to be a good daughter. He asked if there was anything he could do to help and I said just talking to me helps. I wanted to say, to ask that he lets me know I’m in his thoughts at times, but I was too nervous to ask, too messed up with my own sense of entitlement so I didn’t make the request. He’s probably got no idea what that 3 line email meant to me but it made me feel special.. no not special, it’s more like I am real to him, I am someone in his life that he cares about, not just out of mind, not just someone to have lots of bizarre sex with.

I just got a text from my mother to say that Dad isn’t coming down for the brain scan today. It frustrates me. I want to drive up there and demand that they find out what is wrong with him now. I want to push them aside and say, ok I will fix it. I don’t have a medical degree, I wouldn’t have a clue where to start, but being the control freak I am I want to get in there and get it done. I don’t like relying on other people, having to wait and be patient. They are probably doing all that can be done, but it isn’t me doing it so I feel useless and irritable.

There’s a lot going on, a lot of it is about my own stuff. It isn’t that I don’t care about Dad, that I am not worrying about him and waiting anxiously to know what is going on. It is just that alongside that I can not put my recovery stuff on hold. I can not stop trying to process my past and work on getting the future I want. I worry sometimes that makes me selfish, that I should be solely focused on him.

My mum just rang, Dad’s in hospital. They don’t know what’s wrong with him, he has extreme confusion and problems with processing things. They are querying a stroke, brain tumour or swelling around the brain right now, but they don’t really know what’s going on. Mum cried over the phone to me, I’m scared for Dad. I feel really guilty, the week past I have been so angry at them all, and now this. I know I didn’t cause this, but I still feel bad, a selfish daughter. I have never worked out how I feel about my dad, I love him and yet I know we are so angry with him. This could be really bad and I don’t know what I am feeling right now.

It was a very productive day. I went to my supervisor meeting this morning about my 480. It went really well. She mentioned a project on menstruation I did for her a couple of years ago and how I looked at some resource material as part of it and suggested that I look at that with this project. I really like the idea. It means that this essay isn’t just about doing a literature review, rather it becomes doing research. So basically I am going to look at what materials are being used in school to do sexuality education and what these mean for boys as they form their masculinity. Talking about it with my supervisor really enthused me, I am rather pumped about it all. I thought I would have to do just a normal long essay, reading the literature and then paraphrasing what is said to show understanding. But in this way I will be looking at something in current teaching practices and examining it with a critical lens using the already established literature research. It is no longer an essay but a piece of research.

And here is where the thrill comes in. When talking about this with my supervisor she said what I am doing has the potential to be publishable research. What this means is if I do a good job of this research then she and I will co-author a paper and submit it to some sort of academic journal. All going well, all going like I would hope there is a possibility that I could be published next year. It’s a scary thought, in a thrilling and exciting way. This is of course, dependent on me doing a good project, working hard and really getting in deep into the topic. But I would hope that I would anyway, and this just gives me extra incentive. My supervisor mentioned this a couple of times so it seems she is keen on it progressing in that way, and well it could be inferred that she thinks I have the ability to do a good enough job. I’ve been buzzing about it all day. I have always wanted to get published, it was always about my writing, but there is something even more thrilling about it being academic. I have a little grin when I think one day someone might cite me in their work.

After that start I went to check on my glasses. Long story short, after a lot of running around with dealing with WINZ I finally got my order of payment from them and was able to pick up my new glasses. I am not entirely sure if I like them. It strange I suppose after seeing the old ones all these years to have a totally different shape on my face. I think once I get use to that I will like them. I am worried that somehow my new helmet will damage the frames but I am trying to be careful.

On the way back from WINZ to the optometrists I called into Warehouse Stationary to pick up a small note book to keep records and notes from my 480. Last week I saw a really good computer chair there that was on sale by $70, costing about $100. I couldn’t afford it at the time, but speaking with David he said he would lend me the money for a week and we went down to buy it on Saturday. When we got there the chair had been sold. It frustrated me, but we both said it was meant to be. It seems we were right, because at the check out was a pamphlet of the sales and there was the same chair but for $90. They didn’t have any in store but were willing to order me one. So I will get a new chair for $10 cheaper than I was going to pay for it. So I am going to have a really comfortable leather chair for my computer work.

Probably the only shitty part of today was driving home from therapy in the middle of a thunder storm, so yeah I was dripping wet when I got home.

-Kate

The annoying woman seems to have dropped out of the class. What a relief. Class not nearly as overwhelming. I knew I would settle back into it. Yes you were right Sassy

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