Le mother

I had a kinda mini argument with Mum today, its odd, but kinda shows me how differnt our views our and perhaps why we irk each other often.

I cant recal how we got onto the subject, but we were talking about the end of the year. I said its been a good year, to which she looked at me and, oh thanks! I said what? She said, I got Cancer this year. To which I replied, you survived cancer this year. To which she said, you dont know that yet, not till I get my next scan. To which I replied, well you look pretty alive to me and unless you drop dead within the next 24 hours, then you survived cancer this year.

I then continued with, there has been no unexpected or untimely deaths, I have been to theater 14 times with no real issues and gernally things are going ok. To which she kinda grunted and said, you hardly had life threatening surgery. To which I replied, and its hardly minor surgery. For a while, I have no viable airway, my airway is open to the world and there are a lot of risks to it. To which she kinda made one of those whatever faces and walked away.

It just makes me think, how differnt our thinking is these days. I do wonder where I get my thinking from if the person I spend most time with is so differnt. Or does it then become a case of, well I dont want to turn out like that so I will try hard to be the opposite.

It also make me think about how I put things to my mum. I do downplay things such as surgery, always sugar coat and higlight benefits whilst skipping risks. Is it wise. Im not sure. On one account, its almost as if she belittles some of my issues as pettite almost, perhaps that is my fault. But if she knew more, if things were said straight, what would happen then? I think she would stress more, get more depressed and so on.

But then, my head goes back to the summer, when I thought she was begining to understand. A few times, it seemed like whilst she was ill, she sort of knew some of the issues I struggle with, and when I mentioned that I was still holding on to hope that I wouldnt be ill forever and therefore wouldnt need to live close by forever for her to look after me, she teared up, as if thinking dream on.

Its not that I want sympathy or pity or even think my life is tough, its just that I never seem to know where I stand with her or how she views me. One day, she is telling me what I cant do and that I need to look after myself more, the next day, that I am not doing enough and should be doing other things  at my age.

I know I have always had difficulty with my sense of self, I have no idea who I am, which is what has lead to some of my issues in the mental health setting. I cant help but think, that perhaps mum has the same issue, maybe thats why I feel the way I do.

I dont know, I guess I am rambeling. And whilst I do think I am a lot differnt from my mum, I also see a lot of the parts I hate most about myself in her. Espcially the competitvness, even in things that shouldnt be a competition. I know she spends a lot of time compering her ills with my ills and on a discussion with Dad last month in regards in to travel insurance, she near took his head off for suggesting that I am sicker than her. I am just not sure, at this point, how I can persuade her to look at herself as not being sick. She has had the surgery, she has done chemo and radio and the only thing now is a anti cancer drug once every 3 weeks. She should be improving, moving on and getting her life back. They would expect by now, for the average person to be back at work, back at life and moving out of the ill catergory. Yet she seems to be clinging to it. She has a tablet she has to take once a week. You take it and for the hour afterwards, you cant lie down and you cant eat or drink. To my mind, it wouldnt be a problem, you would take it, then go shower and dress and such and by that point, carry on with normal routine. But to her, its this huge deal. She tells everyone how hard it is and how much it gets in the way. Really, if your going to complain at something like that, then its nothing.

I'm just bitching and rambeling at this point with no real purpose. I just wish I could wave a magic wand and somehow know here I stand and who I am. Just finding things hard with her at the moment I guess. I frequently seem to find my Dad and I rolling ours eyes behind her back. But i guess she is just as hard on him and that hurts too.

At this point, I want to run away. I want to be well enough, to go escape, to run far far away start fresh and build my own life and my own self and know exactly where I stand in the world.
One day.
Next year.
This year, I am going to get well.
Next year, Im going to rebuild my life.

Wallowing

It feels like I have written here in forever, in reality its not that long.

I have been avoiding here a little. Wallowing perhaps.

Sometimes, I can look at things and I can say, wow look how far I have come. Look at all the amazing people I have met from being ill. Look how much I have gained.

Other times, I can look at things and feel nothing but bitter feelings, anger and resentment. Its hard not to picture the places I might have been in life had I not gotten sick. If I had just gotten sick from some sort of natural cause, would I have dealt with it better? It feels sometimes, that its harder, knowing that it wasnt natural, it didnt just happen, it was the result of one person. I think that also makes the psychological side harder to deal with.

The last week, has kind of been differnt again from the above. This week has more so been a mood that makes me ask why things are so unfair in life. Why do some people and families get to breeze through life without a care, while others seem to face continual set backs.

There seems to be a lot going on at the moment. Lots of things and people are crumbling, lots of people close to me falling apart or getting sick. Of course I worry about them, but at the same time as worrying, I am trying to hold myself together and appear strong for them. Its not fair if I am the one always sick or struggling if they get pushed out. But of course, covering up is never an easy subject.

I guess I have had a few scares and wake up calls this week. And my reaction? To shut myself away, to ignore everyone and block everyone out. To curl up, within myself.

The last few days I have been in a very dark place indeed. Looking back, its kinda scary to how bad things got at one point. I dont know. Words are hard at the moment. It feels like there is this big black hole inside me. Somedays, it just sits there pulsing, so I can feel it, letting me know its there. Other days, it grows, it feels heavy and weights me down. When it gets to heavy, I instead, turn over and wrap myself within it. To snuggle down with it, and pepping out, is like walking into bright sunlight.

I know there is hope, I know how well I have things, I know that I am the fortunate one and that others need me right now. But sometimes, logic dosnt make sense or my heart dosnt want to follow. Its then when things get dangerous.

At the moment, communication, just seems to not be worth the energy expenditure that it needs.

Time for a hair trim.

So blogger has just told me that I am not following any blogs and have no posts to read, even though there is a list of like 20 bloggs on my follow thingy. :s How odd. So if I dont reply to your blogs, its not my fault, google is against me! lol

Im exhausted again. And my plans that I have had all week for an early night have failed, every night!
Liver clinic went fine, all bloods are normal and yep. ENT, well most of the clinic was cancelled as the surgeon was off. So considering I was supposed to see him a fortnight after my discharge in January, I still have not seen him. Its not essential that I see him as I am in London, but it would have been nice to have had some back up with things. Clinic was pretty much a waste of time tbh. The consultant didnt listen to a word I said, I asked him the same thing 3 times and he gave me an answer totally unrelated to what I had said. I asked him about my tube change 4 times before he actually realized I was asking him a question. I mean, I know my voice is crap, but he works in ENT, he should be considerate of this and listen and if he cant hear, then he is in the right department to go get his ears checked!

GP appointment was fine too. It was only a check up on my mole. They dont think it looks 'suspicious' but they dont like the way it is raised. So, given the risks of my meds, I am to keep an eye on it. And keep using the cream on it. If it hasnt gone flat in about 2 weeks, or it changes in any way at all, then I am to go back as I will probably need a referral (though I am already under dermatology anyway so I can prolly just organize that myself) But its all measured and stored on the computer.

So what else is new?!?!
I got bored of my hair. (theres a novelty)
I decided to give it a trim. I wanted to put some choppy layers into it and some more layered shape at the front.

Before

After

The fringe still needs some off. I like having a long fringe as I can clip it back and it looks kinda funky. But I have a feeling for the next 2 weeks + I wont be doing much with my hair. So I have decided to cut it a bit shorter so it dosnt get in my eyes of a night and annoy me.

Oh and finally booked some place for my parents to stay in London. Its student accomodation, so I keep joking with them that they are becoming students again and various other jokes such as you cant teach an old dog new tricks. But the place is just around the corner from the hospital. Not only will they have their own room with a couble bed, TV and Desk, but also free internet! Which is great, but not so great as they dont own a laptop. Which is a bloody shame, but might see if I can find one, like putting my old one back together so that they can at least keep in touch with people at home easier. And because it will provide some nice communication for my mum when she is on her own.

Oh and even more on the plus side, they have their own kitchen, which means they can cook, rather than having to survive on takeaways. And it also means that when I can eat, I can get them to make yummy things like pasta (Which I lived on when I was in ICU with throat issues. Its tasty and filling yet gentle on the throat)

It all feels so real now. I think I am more aware of this surgery than I have been of any of my others. I just hope that I am not going to come down with a bump after it. The first surgery I had after all my major stuff was for an ovarian cyst and an appendicist. I was in pain to begin with, but I took it all calmly and the whole, I have come through worse, this will be easy. It wasnt easy and when I awoke in agony I couldnt push the morphine button enough. My stomach also wouldnt handle food and I just got very miserable and distressed.

The next surgery would have been my first hernia repair. I didnt think much about it, until the night before when I was alone in hospital miles from home when I went into panic. I stayed up the entire night watching films as I couldnt settle. I was afraid it was going to be like the last surgery, but i was nowhere near as bad.. Yes there was some pain, any surgery there is, but I have little feeling in my abdomen anyway from all the surgery so i managed it ok.

Then I had a couple of throat ops, but they were never that painful. My second hernia repair, I went into fairly laid back. Been there done that type of thing. Again it was painful, but I was more aware of what to look out for. The pain was bearable, but I was afraid to cough due to it, so I did end up getting my pain meds increased but it was mainly so I could handle a chest infection that I developed.

They were my main surgical things with a load of throat operations laced in between them all. Most of the time at the moment, when coming around from laser and such, I would have between 4-8mg Morphine, though usually written up for 10. It would depend on how much my body shakes. As odd as it sounds, I can deal with pain to a point, but my body complains and all the usual things like my pulse shoots up and my breathing shoots down. But the worst one is when my body shakes uncontrollably. They were worried once that I was going to have a seizure, but the pain meds settled it.

So I am hoping I can cope with it well and just sleep most of it off. But I am also worried that I will do what I did when I had my cyst out and go into meltdown afterwards and not deal with the pain. So fingers crossed and time to stop over thinking hehe.

On Christmas, Hospital, and choices

WOW its like a week since I have written. I didnt realize it was so long. Guess, I have been pretty busy (well not really busy but doing other stuff) this week.

I have been going out during the day most days. Most of the time I go home and sleep in my own bed for a few hours, but I have also been out shopping a few times (with the aid of a wheelchair) and I have managed to do the majority of my christmas shopping (just one left to get)

Its been rather surreal. I came into hospital in November and there was no real sign of christmas and it wasnt that cold. Now when I go out I see all the decorations going up, hear the carols on the radio, see the ice covering the ground, see the snow falling and definitely feel the chill of the December air around me. It feels kind of safe to come back to my room in the evening. My room where the only sign of Christmas is the advent calendar on my shelf and 2 christmas cards on my window sill amidst the get well soon cards, where the temperature is constantly controlled day and night. Its easy in here to pretend that Christmas isnt happening, that being out is merely a dream. That is until I open my blinds and see the Ice rink outside my window that appears on the flat hospital roof.

Its not that I dont want christmas to come. I mean I  used to love christmas, before the whole incidence thing I mean. But accepting that it is actually coming means admitting how long I have been in here for and how much there still is to do. Usually by this time of year, I have cleaned the house top to bottom, shampooed the carpets, helped get all the decorations up and tidied. My mum has usually made christmas cakes for all the family and is moving on to eccels cakes and mince pies. We have usually spent Saturday nights watching films while doing all the wrapping up. Under the tree is usually overflowing with presents all ready to be opened. But not this year. This year everything has gone on hold. Everything has stopped while I try to get well again.

Its pretty sad. It kind of reminds me of 7 years ago. When I skipped christmas and everyone around me just went through the motions for the sake of the kids. The kids are older now, they understand more. But of course that dosnt make things right.

In other news, my voice has pretty much gone now. If I really force it, I can just about get a squeaky whisper out. But even that takes a lot of work. My two surgeons are arguing about what to do next. One of them wants to change the tube to one that will hold my upper airway open as well. That way my voice will be restored.

But there are a lot of issues with changing this tube. For starters it will be a smaller tube, which means I would be more breathless than I am already. Considering I struggle with stairs and cant walk to far without nearly collapsing as it is, becoming more breathless is a bad idea. I would imagine it would probably mean using a wheelchair the majority of the time. And bear in mind that this would be for life, not just for a recovery period.

Then there is the issue of cleaning the tube. At the moment I can just take the inner tube out and clean it, when it gets blocked. I wouldnt be able to do this with the new tube, so I dont know how I would manage to clean it.

But on the other hand, I would have a voice.

I think I need to sit down with my family and both surgeons (hopefully when I have a voice) and discuss the options, pro's and con's and decide then. They have booked me in for surgery on the 20th January although im not sure what they intend to do then.

I am also booked in for more surgery on the 23rd December. My ENT surgeon is going to try and temporarily widen my airway so that I have a voice once again. If im lucky I will get christmas out of it then.

I have a lot to think about. I have a feeling 2010 is going to be another one of those bumpy years.

Sinking

Ive been meaning to write for  few days. I put it off last night as  I was in a foul mood. I have no idea why I was in such a mood, you know when you just get in a mood for no reason and cant seem to get out of it. It was odd, as I was on my own all day yesterday, I was in isolation (I will explain i a minute) so I couldnt just go wander around the ward or anything and the staff had to gown up to come in so most of them didnt bother. Then mum text and said do you mind if I dont come in till later. She wanted to go for a walk around Birchwood and do non essential shopping and stuff) so it was 7 before I spoke to anyone properly. I spent most the day sleeping, curled up in a ball.

But as soon as she did come I didnt want her there, I didnt want to speak to her or anyone. I just wanted to curl back up and go to sleep. So I was very short with her and I couldnt help it. She started going on about speaking to one of the nurses where she works who deals with trachys and how I should have this care and that treatment and this equipment. I felt like saying I know but what do you want me to do about it. Its just so frustrating. I know they should be doing more but maybe if I was to try and speed them up it would mean me admitting how much things have got to change.

She kept going on about how I should be using my humidifier more, cleaning my tubes more often, changing my straps more often, having a new filiter every day. I felt like saying to her, well you know what, we could complain about the lack of info we have been given, but since you have complained every time I have been admitted so far its taken with a pinch of salt now. I mean last time, you had my dad fuming, you couldnt visit because 'you were too upset' and all because a nurse had canceled an appointment that I could not make it to as I was admitted. I mean really was it worth making such a fuss over something so stupid? And now that I could do with pushing them I wont because i have had it being a moaner.

So you just visited again today and im still in the same mood. I told you what Mr page had said to which you replied im sure the other doctors secretary could have told him if he was sick, so I said im only telling you what was told to me. We sat in silence then for a few more minutes until you got up and said you were going home to do some washing and that was it.

I know im not being a very nice person right now, but truth be told im struggling. I think im sinking into a bad depression. Im sleeping most the day and not talking to anyone. Building myself into a little box where no one can enter. Putting up those walls and believe me this time they are strong walls, I dont think I can take them down even if i want to. And suddenly and probably predictably, my mind races back to suicide and self harm.

I want to harm, but I know it will be messy and I dont have any dark bottoms I can wear to cover up. Different ways of killing myself are running through my mind, all the new possibilities that exist with my trachy. If only the bin hadnt have just been emptied, I could have gotten a syringe out of it and used it now. I could have been gone by tea time. I have no real means to do it in here, its so damn frustrating. Im impulsive enough that I would do it right now, without thinking about it.

Maybe its being stuck in this room too long. I say that it is approaching 3 weeks but its closer to 4 if you forget that I got out for one day near the beginning.

They say home hopefully on Monday, but I cant see it happening.

Man Im sinking low.
I hadnt realized till now how suicidal I was feeling again. But I will continue to paint a happy face on things. The staff here know me as someone who dosnt moan about being here and all the treatments and such. And I will wait. I will wait for one of them to slip up. To leave something in my room that they shouldnt. And then maybe I can act upon my desire.  I know its selfish especially this close to christmas, but I have had enough pain, enough of trying to adjust, just enough. Im sure in time they will forgive me and see that it was truly for the best.

I have just had 3 hours of uninterrupted day sleep in my own bed in my own room *sigh* ah bliss.
Unfortunately, no I am not home just yet but have been granted a few hours off the ward each day to start adjusting to being out and about again and to see if I find any problems. But anyone who knows me knows how much I love day sleep.

Yeah, so my weekend, not what I planned but yeh.
Started off on friday my doctor told me I could go out for a few hours each day between my meds. He cant send me home yet as I dont have the equipment, but thought it would be a good way of breaking my time up and such. So Saturday morning, right after 10am meds, I left the hospital for the first time in 15 days. Went home and saw my tortoise and had a good snuggle with them. Man I have missed them. Forgot how cute the baby one is when he sits in your hand and stretches his head out to rest on your thumb.

I decided that I didnt really want to stay indoors as I was fed up of being stuck inside, but as I was getting pretty heavily out of breath just walking around the house, I wouldnt be up to much walking. So we went to a supermarket where I was able to lend a wheelchair. By the time we clipped the trolley on the front it felt like an armoured tank, but at least I was out. I kept a scarf around my neck covering my trach and so got some funny looks as I hardly look in need of a wheelchair.

Navigating around the shop was pretty hard, but it was nice to be able to pick my own magazines, drinks, junk food. Right at the end of the shop, we walked in to Sid, my college tutor. He asked how I was and said I was looking well and such. Was a bit awkward. I have never ever walked into him outside college and my first few hours out the hospital and I do, how typical.

So went home and had tea and went back to the hospital, absolutely shattered. I basically curled up and slept for 3 hours, waking around 8. Had a shower and a sandwich and gossip online with some friends and went back to sleep again.

Sunday, got up and ready to leave the ward again at 10. Mum picked me up and we went home. We were waiting for my dad to get up from his night shift and then we were going to go surprise my sister by visiting her new house and have a bit of dinner on the way home.

I had only been in ours for about 30 mins when I got a killer headache and started aching all over. Soon I was throwing up and virtually crying in pain from my head and my joints. I couldnt stop shivering and had two jumpers and a blanket on. They bought me back to the hospital.

My obs where taken and my pulse was high as was my temp. I still couldnt stop throwing up even though I had eaten very little. Its really hard to trow up with a trachy as you get out of breath so easy. They called the doc to examine me and gave me some anti sickness. He couldnt find anything wrong as my chest and everything sounded clear. So he ran bloods (Thank god for my hickman line). He wanted to draw normal blood too but he knew what my veins were like as he had been asked to cannulate me a few times when he was on nights and my cannulers kept failing. He had a look and alittle poke but gave up. Said that if the bloods showed wrong results or anything he would come back for another go.

So I spent all of Sunday sleeping and throwing up. By tea time I was starting to feel better, though I still had a temp, but I was able to keep fluid down again so mum bought me some food in, which also stayed down.

Slept right through the night but morning obs showed that my temp still hadnt come down, even though I felt cold. Saw my normal doctor again, he was worried about my temp and said I would probably need anti biotics but they where still waiting on cultures.

I slept most of Monday morning, had my dinner and then mum came to collect me. Went home and decided to go for a nap in my own bed.. Didnt think I would sleep for a further 3 hours. Had my tea and came back to the ward again. So that was my weekend. So much sleeping is unbelievable. But tonight my temp is back to normal, my heart rate is back down to where it usually is for me and I feel a hell of a lot better. So hopefully im going to avoid the anti bioitcs and I have just slept whatever it was off.

Mum thinks that perhaps i over did it on Saturday. I dont know. But I felt rough on sunday.

Where also looking into getting me my own wheelchair. Not exactly what I had planned to ask for for christmas, but looks like im going to be needing it. Dreams of jumping on the coach to visit friends in scotland and london are getting further and further away. Plus being in a wheelchair sucks. Not to mention my parents are old, they really cant push me around all the time. My dad has bad arthritis and my mum needs a knee replacement so pushing me around is far from ideal. But I just dont see any other option at the moment. Walking more than 10 steps I get out of breath and its so tiring. It just feels like a huge step backwards. Getting a trachy was supposed to cure me of my breathlessness, but it hasnt and I dont know why or where to go to next. I cant help but think perhaps there is something else wrong with me to make me this way. I havnt had the courage to ask yet.

back to the ward

Well I did end up in hospital, again!
I was feeling really breathless, so mum said why not go the walk in centre and get your oxygen saturations checked. i agreed to this, thinking if there fine then I have nothing to worry about and if there low, i can go look for treatment.

Well I got there and was taken through to triage and hooked upto the machine. The nurse looked at the numbers and said hang on I will be right back and went to get another nurse to help her. My pulse was 145. They took it mannual and said it was irregular. Listened to my chest to which they said it was clear. They then said they that they wouldnt be happy with me going home. They were going to send me to the royal, but I mentioned that I was on C ward in the cardio hospital. they didnt know how to have me addmitted to there as there is no A&E.

So they rang the ward, who put them thruogh to my consulatants registrar who said he would admit me. 5 minutes later the hospital phoned back and said they had a bed for me. So i go to leave and the staff at the walk in then say there not happy for me to go in my condition with my mum. they wanted to phone an ambulance to take me incase there were any problems on the way down there. After much persuasion I managed to talk them out of it on the condition that I went straight there and used a wheel chair to get from the car to the ward.

So that was me stuck in the ward yet again. didnt get any sleep as i was in the main ward where people where in and out all night. saw my surgeon the next morning and told him what happened. He said he would take me down for another broncoscopy while I was in so he could check everything and then I could go home.

Went down for my bronc at 4 and came back at 5. Asked the nurse if i could still go home that night, she said she doubted it, but could go home early next morning. the surgeon came to the ward to see me and again confirmed that I could go home first thing the next morning. I looked at him and said can I go tonight please. he thought for a moment,t hen said, you do live right opposite the hospital, so I supposse so as long as you come straight back if there are any problems.

So by 8 i was home again. YAY.
Thought i was going to get readdmitted though. Went to sleep about 11 but at 3am, I woke struggeling to breathe. It once again felt like i was breathing thruogh a straw. I couldnt cough as my throat was so sore and dry. I spent about an hour trying to clear it. in the end I decidied that i would plug my nebulizer in give it one go and if it didnt work then I would go wake up my parents an go back the hospital. Luckily, by the time I ran one neb through I was able to cough it clear. Still scary though.

So i have woken up this morning, feeling crap, too hot, too cold, sore throat, headache, aching all over. feel really rough. Suppossed to be going for a blood test on the way home too. Was suppossed to get it yesterday but of course being on the ward meant I couldnt. I just need to sleep, but im in college now. Not that it is doing me any good being in here, I cant concentrate on anything and so im just traweling the web.

In other news Peters trial got adjourned till Janurary. I am considering writting to him if i can, not sure yet. Bloody january though.

Oh well enough moaning for one post.

Please

I keep trying to work on this stupid assignment for networking. Not only is it one of my worst areas of computers, but it is taking me twice as long as it should due to having to research everything as I missed the lectures with being stuck in hospital. I dont understand half the concepts and its just becoming annoying. That and the fact that right now I have the concentration of a fish. Im hoping its the steroids that are making me like this. I get to stop them completely on Sunday. So we will see how i feel then and of course if my blood pressure comes down.

Mum went shopping on her way home from work today so I sorted my own dinner. I was in the living room when she came in and I had just finished my yoghurt I was having for desert. I started telling her that we forgot to put the baby tortoise to bed last night as he had dug down in the soil and we forgot to undig him and put him in the bed.

She then proceeded to lecture me on how little I have to do and I still cant manage to do the one thing I was suppossed to do right. That I never do anything for the torts (felt like saying yeah, Ive just been showering the baby twice a day and doing his eye drops, that I have never once seen you do!) Which then lead on to the usual lecture about how lazy I am and how little I do, (all this was while she was loudly unstacking the dishwasher and slamming pots and pans around) How little I did yesterday. I would have washed up, but she had already said she wanted to stack the dishwasher. And during the day I was working on my assignment. Just grrr.

I have really low self esteem as it is, but when mum starts putting me down, what little esteem is there just vanishes. I find myself fighting to hold in my tears. I could never cry in front of her, that would be a sign of weakness, it would let her know that she has won! the last time I lost control and cried in front of her was when we were on holiday and she was being awful to me and bethany. I felt so sorry for Bethany as she had never experienced anything like it before. And I started crying and couldnt stop. It went on for a good few hours, even when i got called out to eat tea. To which she told me I should be ashamed crying in front of Bethany. Gee thanks mum.

This song kinda sums up a lot of how I feel right now.


In more positive news, I went two whole days without using my nebuliser. I had to use it this afternoon after coughing my guts up and I should probably use it again now, but dont want to wake people up. But two days is good. Something must be improving. Even if I still cant breathe. Felt breathless all day today for no real reason. Dont feel blocked up, but just moving around making me feel like im lacking oxygen. Not a nice feeling. And yes I have tried walking slower but it far to hard. I cant physically make myself walk slower.