Introduction

Prior to my hospital admission for a ketamine infusion for chronic pain I struggled to find information that would help me understand what I was getting myself into. What would it be like, what would happen to me, what would I be doing for the nine days of the hospital stay? This blog follows my experience from deciding to have the ketamine infusion, my expectations and journey through it and out the other side many months later.

I am planning on videoing every day so I can chronicle and upload my experience. I have never done something like this before but I am motivated by how little information I could find and, importantly, how little Australian information.

I have found it difficult to decide whether I am writing in the past or the present as my writings have also been fluid. Please excuse me if I drift between the two depending on how I was/am feeling at the time.

I have no expectations on the end result of the infusion, as my pain specialist Raph said many years ago: Karen. Nothing will take your pain away. To imagine not taking any pain meds and for my pain to go away is like believing in fairy tales.

My inability to get a clear picture of what it was going to be like made me determined to document my own experience, so hopefully someone else who is looking for information will find my journey helpful.

My desire for this blog is for it to become a place where people can share their experiences with having ketamine infusions. I would like to see it develop into a useful resource for people looking for information before they make a choice whether they will have this treatment. If you would like to share your experience please send me an email to: ketmainekaren@gmail.com  You will find other people's perspectives at the very end of this blog.

Background

In 2003 I was involved in a car accident that left me with severe neck pain, degenerative changes in discs and restricted movement in my left arm. I can give a long, detailed history of my prescription drug history, different procedures and treatments that I have had since the car accident. However I don’t believe that it is relevant to this blog.

Prior to the ketamine infusion I was on 25mg of Durogesic (fentanyl) patches that I changed every 72 hours, along with 10mg of Endep (amitriptyline hydrochloride) every night and a top-up of usually two Panadeine Forte (paracetamol and codeine phosphate hemihydrates) about mid afternoon every day. There were also days when I needed two Panadeine Forte at 8am so I could get out of bed. Some days I would take four of them.

I am very careful not to abuse pain killers and if I feel I need to take more than two Panadeine Forte a day then I really think about whether I need it, or whether I just think I need it. My pain specialist says I am on the equivalent of 85mg of morphine, I don’t know why I’m not a zombie but I do struggle getting up in the mornings.

I do know that you have a choice about pain and how you choose to let it affect your life and I manage mine by pretending it doesn’t exist. When I am struggling I remind myself of one of my first visits to Raph, my pain specialist and he showed me the front of a book on pain. On the cover was a drawing of a cartoon character walking up and down along a graph with changing curves. He said to me: the line on the graph represents pain, it is always changing. His comments have stayed with me and on a bad day I know that there will be better days in the future.

I have adapted my life to manage my problem, I try to limit my driving, I can drive somewhere if it is an hour each way but I can only do this once a week. My car is modified so I drive with a spinner/knob - this means I don't have to use my left arm. I can’t carry a handbag or any shopping but walking is really good for me. 

The restricted movement and pain I have is part of me and after 14 years I don’t know any difference. It's how you deal with it that is important. I am lucky that the more I move, the more I walk the better I am.

However this blog is not about my history but my future and whether this procedure will help me. 

Two months before

I have been seeing Dr Raph, in inner Melbourne, Victoria, Australia, since 2003 and in September 2017 I was struggling with my pain so he suggested that I should see a colleague of his, Dr Malik, to discuss whether a ketamine infusion might be useful in helping me manage my pain better.

Malik was very friendly and pleasant and asked me various questions about my medical history. He said that everyone had different experiences and outcomes with a ketamine infusion - some people could be pain-free for a month, three months, six months, a year or maybe it wouldn’t make any difference at all. I decided it was worth the nine days out of my life to take the gamble that I could be pain-free for a while. 

Malik didn’t give me a lot of information on what to expect, apart from the fact that I would have to stay in the hospital for nine days and, even though it is possible for me to work remotely, he didn’t think I should continue working during this time.

My hunt for information

I wanted to find out more about what I was going to be going through so firstly I asked my neighbour Martina who is a nurse. She said that she is often involved with the administration of ketamine infusions so I decided she was a good place to start. Martina said: we start you off really high and then start decreasing the amount and we ask you how you are feeling a lot. You might experience hallucinations – you will be fine. I did not find that this really helped me understand, I needed more information.

I searched online but could find very little. I found a couple of people’s blogs or attempted blogs. They would start off writing but after a day or two into their hospital stay they would stop. I was later to have the answer on why this occurs.

From friends and family I received sideways looks and comments like, “you’ll be having a great time” or “special K, ah....... “ How could I possibly have a good time in a hospital room on my own or maybe, even worse, in a shared room!

My concerns

My concerns in agreeing to the infusion are mainly related to the long hospital stay, at this stage, more important to me than whether it will benefit me. I lead a busy business and social life and being restricted to hospital for nine days is very concerning.

I wasn’t happy to find that the hospital was a suburban private hospital 30 minutes' drive away when we live within easy walking distance of many private hospitals in inner city Melbourne.

Dr Malik told me that he did these procedures in the first week of each month and it would depend on when/if my TAC (Traffic Accident Commission) approval came through when I could be booked in. 

As it was now September 2017 there are only a few months left to fit it in before the end of the year and summer holidays. After waiting a few weeks I phoned TAC and to my surprise the person I spoke to said she could approve it over the phone. It was approved straight away, which made me wish I had phoned earlier. I then contacted Malik’s office and was booked in for 6 weeks time.

I was told I would be admitted on a Thursday afternoon and that on Friday afternoon a PICC line (peripherally inserted central catheter) would be inserted and on Saturday the treatment would start. I found this quite frustrating, that I will be admitted on a Thursday and nothing really starts until Saturday. I hate the idea of being in hospital, stuck in hospital, restricted freedom and restricted privacy – what if I don’t get a private room?

Malik’s receptionist said they used to admit people on a Friday but they sat around all day and weren’t given a bed until quite late in the day so it was decided a Thursday admission was better.

Preparation

Once I had made the decision to go ahead with the infusion my current drugs seemed to be working better in managing my pain. So much of pain is psychological and just by making a decision to try something different seemed to help my perception of my pain. Maybe I don’t need this? I seem to be going ok, I can keep on this going like this, I am not that miserable.

Then I start to read and watch YouTube on people’s experiences with ketamine infusions. This could be a really great thing for me, it would be pretty amazing if I could stop using the drugs I take or take less of them. Then I start (for what I believe is the first time) feeling the psychological pull of my fentanyl patches. How would I live without the patches, that have become part of my existence?

I fill out the paperwork and sign a consent form acknowledging the potential side effects from ketamine. These include dizziness, nausea, vomiting, headaches, bad dreams, perceptual disturbances, confusion, fluctuation in blood pressure, chest pains, falls, euphoria, increased libido, liver function impairment and seizures. None of these worry me, everything has side effects, what will happen will happen.

I have two huge fears: what will I do for nine days and what if I don’t get a private room?

I go online and look at reviews for the hospital and I am not impressed with what I find. There are people complaining that they were in a mixed ward, other patients having to share rooms with people with dementia screaming through the night.

I start plotting how to get a private room. I have private health insurance, but this is TAC so my private insurance won’t cover it. Malik’s receptionist says she will request a private room and also suggests that I phone the hospital a few days before my admission and put another request in.

I discuss with friends how I am going to get a private room, I suggest I can get references from my husband and daughter stating that I am difficult to live with! My GP, Puneet, and I decide that this would work against me - why help the difficult person?

I then think anxiety is a big mental health issue now, so I will pretend I have that as surely they have to cater to mental anxiousness. However, the closer it gets to my admission date the more there is no pretending about my anxiety; I can’t do this in a shared room. I am an adult and I need space and privacy. I am the person who only allows my closest friends to stay in my house for a maximum of two nights, I can’t live with a stranger.

How important is a private room to me,? Maybe I can pay more? My husband Nick says would you pay $1000 a night? No way – but I would pay $1000 for the nine days. I discuss this with Puneet and she thinks this might be an option but I should wait and see whether I get a private room first.

As I am becoming more concerned about whether this is worth continuing with I do more research online. I come across a lady on the internet who couldn’t continue because she was suffering liver damage – now I really want it to work. Imagine going to all that effort to give up nine days of your life to be told part of the way through that they are going to stop the treatment?

I speak to Puneet about having to be admitted on Thursday when nothing happens until Friday and she agrees that I can go out for dinner on the first two nights. I am wondering whether I could stay in a local hotel or go home for those nights – think I will.

I start tackling the ”what will I do keep myself busy part of it”. I make documents of things I need to do, like tidying my inbox, catching up on business paperwork and planning our next holiday. I download lots of books, movies and TV shows – I would have to be in hospital for months to get through the work load I have organised!

I contact a handful of friends telling them that I am going to be really bored and they have to come to visit me. I am blessed with lots of wonderful friends but they are interesting, busy people but hopefully someone will come to visit.

Next thing to sort is the spoilt dog Pippa who rarely spends more than two hours on her own. She will have to spend the nine days with loved Auntie Jenny – hopefully she will be smuggled in to hospital to say hello.

Friends say that I am going to be difficult to deal with and Nick will stop visiting after the first few nights! Although the former might be true I know he will keep persevering.

8 days out 17/11/17

The concern about what will I do for nine days has now changed to: will I be able to achieve all I want in nine days? My lists are growing, I have business paperwork to do but I am concerned I might not be able to concentrate enough to work or study. A friend also suggests that I download audio books in case reading is difficult. Now I am worried that I am too prepared, my fear of having nothing to do seems to have made me very busy. For someone who doesn’t believe she is a worrier I am doing a lot of worrying! I’m also not getting much sympathy from people close to me who say they would love to have nine days with nothing to do, lucky me.

I discuss the drug changes with my wonderful osteopath, Jacques, who says you are going to be so much sharper when you come off the fentanyl. I ask him whether we want me any sharper and he agrees that we don’t!

To cover for the fact that I am disappearing for nine days I try telling people that I am having “a procedure” but I find this prompts more questions so I am now saying I’m having “a medication adjustment” and that seems to be working better, plus it’s the truth.

My business partner Kay and I run an online business so we can work anywhere. She asks me to step away from our business for the nine days but I refuse to, saying I will be bored, I’ll need to work. She looks very worried so I say: ok I promise that if you tell me that I am out of line I will agree to stop working. She looks even more concerned and says and what if you don’t listen to me? I reply with: how about if both you and Nick tell me I have to stop working I promise to do so? She still doesn’t look happy but agrees to this compromise.

Packing

I am starting to pack my case, plus I will have other bags ready for Nick to bring up if I need them – have I mentioned I like to be organised?

Clothing - what will I wear and why can’t I find information on this?  There are apps for packing a suitcase for a holiday but no information on packing for a ketamine stay. I don’t know much about hospital stays nowadays but I think the days of getting into your P.Js the day before your operation are over and now you’re encouraged to wear normal, casual clothes during the day if you aren’t really unwell.

I am inspired by my friend Penny. When she was going though chemotherapy, she got up every day and dressed, put on her make up as if going to work and then lay on the couch for the day. My plan is to get up every morning and get dressed as normal, but I am expecting hospital to be hot. I also know I will have a drip in my arm so I am choosing T–shirts that expose my elbow and casual pants. I do not want to be in P.Js throughout the day, I am not sick. Every morning I will have a shower and put on basic make-up, that’s how I present to the world normally so I intend to continue.

I need to plan my medication, giving this over to someone else to control is not easy for me. I am always responsible for my medication and I follow all prescribed guidelines, however in hospital this will be taken away from me so this is a bit tricky. I understand why I will no longer be responsible but the lack of personal control is an issue for me. When the ketamine infusion is happening under no circumstances would I self-administer any form of medication as this is well outside my normal treatment. However, I am being admitted at 3pm on Thursday and the ketamine infusion doesn’t start until Saturday – I will not be relying on busy nurses who don’t understand my pain needs to give me my pain medication during this time.

As well as the pain from the car accident I also suffer with migraines and use Imigran nasal spray when needed, which is usually between 4am to 7am once or twice a month. In the days before the ketamine infusion I will not ask/beg for my Imigran or Pandeine Forte, I will take them as required. When you have managed your own pain relief for a long time it is unrealistic to hand it over completely to someone else who has little understanding of your situation.

The lack of a private room is still worrying me, thinking of having to share, and maybe with someone of the opposite sex is stressing me. I fill out the hospital admission forms and write on them that I am anxious about this.

Two days before admission

I contact the hospital two days before my admission to request a private room and I am finally told the truth; TAC patients are only given shared rooms. I ask if I can pay extra and am told it is $50 a night – a bargain!!! Yes please!! It comes with the disclaimer “if there is one available”. The hospital says if I phone back at lunchtime on my admission day I will be told if I have a private room.

Day 1 Admission Day Thursday 16/11/17

I phone at lunchtime and it isn’t good news, the hospital is booked out and I will be sharing. At this stage I am ready to bail, I ask if there is the possibility of moving to a private room the following day but am told there isn’t a guarantee. I spend most of the day crying on and off as nine days in a hospital for a procedure that has a slim chance of working is a big ask, but having to share a room is the final straw for me. Nick tells me that if I can’t continue it’s ok and we can go home, but I decide to hang onto the belief that I will get my room when it is important, in two days' time.

We arrive at the hospital mid-afternoon and the admissions lady says that she is aware that I am happy to pay for a private room and tells me to keep on insisting on it. As I am taken by a nurse to the room I am crying on and off. Other nurses come to check on me and are trying to help the situation, the staff are all lovely. I have the curtain totally around my bed, trying to make my own private room. My roommate is elderly and quiet but she has her television on continually which I find annoying, but it is very low so she is doing her best.

I am told I am getting a PICC line in tomorrow and this requires an x-ray and a doctor. Up unto now I haven’t been given any information about this procedure so this comes as a surprise.

Nick and our daughter Khloe arrive after work and we all go out to a local restaurant for dinner. After they go home I go back to my room, do some work and try hard to keep my emotions in check.

My room is right next to the nurse’s station and the patient’s buzzers go off loudly and constantly. I count the time between the buzzers and on average they are every 10 seconds, I try closing the door but it doesn’t make any difference.

At 11pm the nurse comes in to take my blood pressure and check my oxygen levels which I think is unnecessary as there isn’t anything wrong with me. Surprisingly she says that I’m not making the required oxygen levels and I should take some deep breaths. I speak to her about the fact that I can only do the next nine days if I have my own space and that I don’t know how I am going to sleep. She is lovely and says she will try to message the doctor to arrange a sleeping pill, but obviously it is very late. She also says she will see if she can get me moved tomorrow. I am also told that another lady who was booked in for the infusion at the same time as me has left because she didn't get a private room - I am almost hot on her heels.

She comes back at 12 and gives me what I think she said was a Valium. I feel like such a baby but it seems that the older I get the more important it is that I get what I need. Growing up in the 60’s meant being seen and not heard and downplaying all emotion. It has taken me until this stage of my life to be able to voice my emotions and not to pretend that I am ok when I know I’m not, and now I know I need help.

Day 2 Friday PICC Line

It’s now 12.24am on night one, the sensible, no fuss lady I am sharing with has been asleep for a while and she doesn’t even snore, so how can I complain about sharing a room with her? Update: it’s 12.30 and she is snoring.

I can’t believe what the Valium does, it takes my stress away, I’m not spaced out or anything I just feel calmer and less stressed, amazing. I sleep a little but by 2am I’m up again and that’s the real concern about a shared room, you don’t want to upset the neighbour on the other side of the curtain, it’s so absurdly close to be living next door to a stranger.

I go out to the nurse’s station, they suggest they could give me Panadiene Forte. However I am not interested in their offer of Panadiene Forte, I am not in pain, I just can’t sleep so I say no thanks.  They then suggest Endone (oxycodone hydrochloride) while I am thinking over whether this will help me (as I usually find it useless) they explain its properties to me so I decide if it will help me sleep I will take one.

I sit on the couch in the common area on my laptop and the internet until 4.30am and then go to bed, I doze on and off until 6.30am (I am so grateful for my neighbours lack of snoring). I am woken up at 6.30am to check my blood pressure which I think is ridiculous as I am not ill, only to be told it’s too low!

I get up, shower, get dressed and put on make-up, I am determined to be dressed and be me every day, I am not ill.

The manager promises me a private room today, this makes all the difference - I can do this if I have my own space.

In the afternoon I am taken by wheelchair (weird) to the radiology to have the PICC line inserted - it is used to give medication directly into the blood stream. My right arm is disinfected and prepared for the line. I would have preferred my left as I need my right as it is my dominant arm and the use of my left arm is restricted because of the accident, but the right it is. The vein is found and marked by ultrasound and I am given a local anesthetic injection in the site just above my elbow on the inside. 

The injection is quite painful and I do bring my knees up, curl my toes and make some ouch noises, then the pain is over and the line (a smallish tube) goes into my arm. I was told I wouldn’t feel anything but when it reaches the front of my neck I certainly felt a gulp as it went around the corner to my chest. However it wasn’t painful and true to their word I couldn’t feel it afterwards.

Not long after that I was moved to my private room. It’s amazing, there is space and I can keep my door shut and pretend it’s a hotel room. I can unpack my suitcase, fill the drawers and the cupboard plus leave my personal things out in the bathroom. Sharing sucks. I am so excited you would think I was checking into a penthouse suite on a world cruise. I can do this now!

My room is so quiet, I can’t hear the constant dinging of the patient’s buzzers, nor do I need to answer phone calls in a whisper and leave the room for fear of disturbing my unknown roommate. Now and then the nurses ask me whether I need anything for pain, I tell them I am fine, but I don’t let on that I have my own medication so am managing it myself.

The PICC line is more painful than I expected, it’s not horrible, but it’s not comfortable. Nick arrives after work and we go out to the local shopping plaza and then to a restaurant for dinner. When I get back I try to sleep, I need to sleep and finally about 11.30pm go to sleep.

Day 3 Saturday The ketamine starts

I sleep until 6 in my great, quiet room. I have breakfast, shower, dress, put my make-up on, make my bed and read until my friend Anastasia arrives about 9am.

9.15am The Ketamine is started on the lowest dose, 2mg, it’s a continual feed into your body so there aren’t any ups and downs. Every hour it is increased by 2mg until you get to either the no- tolerance zone, which is usually identified by having hallucinations, nausea or vomiting or to the top limit of 40mg.

The nurse asks me my pain score, on a normal day it’s four so I tell her four but really it is five but I know that is only because I haven’t been moving around much. She says my 4 would be someone else’s 7.

Anastasia manages my new mate, the machine that administers the ketamine. I name him Roger, and we all go to the cafe for coffee and vanilla slice. We then go outside and down the path to a nice bench under a gumtree (Mr Garden Bench). We return to the room at 10.10 for a top-up and then repeat this every hour until Anastasia leaves at 12.30pm. I make some phone calls and do some work.

A few words about Roger: his official name is an intravenous infusion pump and his job is to administer the ketamine intravenously to my circulatory system. The ketamine comes in what looks like a long, very large syringe. Two nurses need to oversee the changeover of the syringe when it runs out and the front part of the machine where it goes is only opened with a key. Roger has two electrical leads that plug into a power point behind my bedside table, luckily I have bought a power board from home so I can keep the leads closer to me as I need to unplug both leads if I want to move from the immediate area on the right side of the bed. When Roger is unplugged he runs on a battery.

At 1.45pm I start to feel that it is affecting my mind. I feel a little altered so call my business partner Kay to let her know that something is going on. Nick arrives and I start to feel a little unpleasant and strange – this is not something that you would do for fun. My sense of smell is heightened and I find the diffuser I had bought in overpowering and ask Nick to move it to the other side of the room. I didn’t feel hungry but I have a small piece of fruit and after having one piece eat the rest of the small bowl.

2.25pm I am increased to 12mg and I tell the nurses I feel a little altered. We take Roger out for a walk to the bench under the gumtree until it was time for the next increase. My time perception seems a little altered: has it been 10 minutes or 45? My thought process seems to be moving around a bit.

3.27pm I’m increased to 14mg per hour and I do some work, typing this document. The unusual feelings come and go, none of the new feelings seem to be constant.

4.22pm It’s increased to 16mg and I believe I am still managing to work ok, it’s just taking me longer to process and I need to triple-check what I am doing, but at least I know that I need to triple check.

5.17pm I’m increased to 18 and my pain score drops to 2, unbelievable, in a good way

6.07pm Doc Malik comes just after 6 and I know that this is the time he arrives as I am watching the news, the same as when he arrived the previous night, so why am I surprised to see him?

He explains a little more of what will be going on, saying that it will be a similar feeling to being drunk and I’m not to feel scared. He and Nick say that I shouldn’t be working but I think I can still continue at this stage. I don’t scare easily but I do feel very unprepared, cognitively and psychologically.

7.16pm This feeling is not pleasurable, it is slightly uncomfortable; you would not choose to do this. My head feels a little heavy at the front on the right side where I have previously had skull fractures (I am very accident-prone). The pain comes and goes, nothing is consistent.

My father doesn’t realise I am in hospital and I ask Nick to manage any emails from him as I am stressing that I will forget to check them and if I don’t reply to an email he might phone. I don’t want him to know I am in hospital as then he will ring me every day, maybe multiple times a day, and I can’t cope with that pressure on a normal day let alone while I am in this state.

7.27pm The dose is increased for the final time tonight, I ask the nurse what name she wants to be known by in this blog, she chooses “Beautiful Girl”, BG, perfect! I don’t like that I don’t know her name, I want to speak to the manager about name tags and the nurses writing their names on the white board in my room to help me remember.

We go for a walk and I feel a little unsteady on my feet, I’m certainly flaky but not off with the pixies. Small underlying stresses in my mind are easily making me cry. It’s strange to try and understand that I will be in this state for up to a week; it’s not a pleasant thought as I am not feeling comfortable in my own skin.

8.21pm Nick goes home which is fine as I would really like to watch a trashy TV show and not feel that I should be doing something else. But I can’t as there are things I have to do, I need to write this, I need to understand what is going on and I understand things by writing them down. I need to talk about pain, the big ugly secret of my life. But am I brave enough? Possibly not. Bringing it out in the open serves no purpose so why would you do that and waste time and effort on it, better to enjoy life.

There is this new thing that nurse Beautiful Girl talks about, the no-pain option. Is this a realistic option? It’s a very interesting thing to consider I will have to put some thought into it.

So now I have to make a choice between three things that I want to do. 1. Watch OITNB (Orange is the New Black) 2. Explore the no-pain zone in my head or 3. Phone Nick because I said I would. And I might like a chocolate.

8.38pm I’m going to watch OITNB and eat a little chocolate. How can I be like this for a week? It’s not possible. I discovered that the chocolate is not in reach – my life is now ruled by how far I can move from Roger without doing the unplugging thing, which is currently annoying. So no more typing, I am going to watch OITNB.

10pm I loved the show, it was perfect for my head space right now, it was also good that I could replay any bits that I was struggling to follow. I went to the loo and of course while I was in there the nurses came to change over. BG said that she was leaving and would be back tomorrow afternoon and that I had done very well today. What does that mean, that I have done well? I try my best at everything I do but in this situation what or who am I competing with? Well compared to what or whom?

After they left I got changed for bed only to find that I couldn’t get totally out of my clothes as the PICC lines went through my right sleeve, my new nurse (a weekend agency nurse) said he would be back when he had seen everyone else so I’ve climbed into bed to wait for him. My brain tells me I should think about sleeping but I would like to watch another show or maybe phone Kay.

Kay didn’t answer, so I watched another show and finally at 11pm (an hour after I had asked for help) the nurse came in. Without warning me or asking me if it was ok he shoves his hand up the inside of my top, brushes past my boob and unhooks my lines from the clothes. I do not feel dignified but more like an elderly, frail lady who needs assistance in getting changed. He then picks up my clothes and puts them on top of me. Is this how I am meant to sleep with my clothes piled on top of me?  

After he leaves (he doesn't shut my door) I get up to move them to a chair. I then discover that he has plugged Roger in on the far wall, I can’t reach the plugs at all! I get down under the foot of the bed and work out how the brake on the bed releases so I can move the bed away from the wall and get in behind it to get to the power point and move Roger’s leads back to my side of the bed. He really is a dick! None of this sounds like a big deal unless you are in the middle of a ketamine infusion which means I am very unsteady in my physical movements and everything takes a huge thought process. I get the bed back in position, put the brake back on, close my door, and try to go to sleep. It is so ridiculous that I had to do all of that. In my state it’s a big job and I’m surprised I managed it all without falling over but I didn’t want him back in my room.

Day 4 Sunday Karen has left the building

Just after midnight I try to settle down to sleep, by 12.45am I knew it wasn’t going to work so I asked for and received a sleeping pill. I had trouble getting to sleep with the visual and sound disturbances (hallucinations) keeping me awake but I think I must have dropped off after 1.30am. I woke up just before 3am as the nurse came in to take my blood pressure. I said I was having trouble sleeping, he didn’t comment, acknowledge I had spoken or offer any suggestions. I am very unimpressed with the level of care offered by this nurse; all the other nurses have been lovely.

3.30am I give up on trying to sleep and ask for a sleeping pill and am told that sleeping pills aren’t permitted after 2am as you will be drowsy during the day: I respond with, I’m not drowsy, that’s the problem. The nurse doesn’t answer, he just leaves. I am wondering why it would matter if I was a bit drowsy during tomorrow morning as I am in here for another 6 days so even though I know it’s not good to disrupt the day/night sleep pattern it’s the beginning of the infusion and it’s not like I have anywhere I need to be.

3.45am I give up on the sleep thing and am pleased that the sound and visual disturbances have stopped. I start reading the newspaper, doing some blog writing and munching on a few salt and vinegar chips. I certainly feel very unsupported by this nurse and I will be letting someone know.

The hospital internet isn’t working and I’m not sure whether the problem is me as I really can’t trust myself at the moment or whether there is a problem with the network. It’s a bit of a pain when the newspaper slides off the wrong side of the bed, as it is the side I can’t reach. If want the paper I have to either call for the “orderly” (that’s how he’s acting, he doesn’t deserve the nursing title) or unplug Roger so I can get around the other side of the bed. I don’t want the “orderly” back, and I decide it’s too much trouble to disconnect and then reconnect Roger. So the newspaper stays on the floor.

4.25am The “orderly” comes back and gives a little nursing advice, tomorrow ask for two 20mg sleeping tablets and he reiterates that the policy is no sleeping pills after 2am. I do ask him to pick up the newspaper before he leaves. I read for a while and then try for some sleep and it works but it is a disturbed sleep with a constant overactive mind. I am starting to understand Russell Crowe in A Spotless Mind. 

The “orderly” comes back and I get a fright when he opens the door without knocking and I sit up and knock my glass of water to the ground. It takes me a few minutes to work out where I am. This often happens when you stay somewhere other than home, so imagine that tenfold when your mind is all over the shop, but I do get back to sleep until woken again. It’s a shame that when I have so much trouble sleeping that I am being woken up.

BG is constantly asking me about my pain score, the other nurses don’t. At one stage she explains to me how your pain score is rated on a scale from one to 10. I try to tease her that I know how the pain score works as I had my accident in 2003, but I don’t think I come across well so she doesn’t understand.

Note: Anastasia is typing the next bit as I am not able to type anymore; it’s all too over the shop. It’s easier for me to dictate to her and she’s happy and willing (or so she says).

8:00am I doze on and off and I have a small dinner roll for breakfast. I send Anastasia a text to prepare her that I am nothing like I was yesterday.

9:00am The ketamine dose is increased to 24. I wasn’t allowed to shower straight away. I had to wait half an hour to see how affected I would be. I showered by myself by sitting on the chair. I got dressed for the day, put on make-up and lay on top of the made bed.The main light is annoying me; I prefer the light behind the bed and the natural light.

10:00am I become emotional and stressed and I decide that people in my work and home world should be awake by now so I am wondering why the phone and emails have been so quiet. I start worrying about my father finding out I am in hospital.

Anastasia arrives and finds out that the internet issue is hospital-wide and won’t be back on until possibly tomorrow morning. Nick says I can hotspot my phone instead. I have gone off the idea of videoing my blog as I’m not comfortable with anyone seeing me like this nor am I able to manage the camera. Anastastia takes a photo of me lying on the bed. I am appalled at how I look. She says: I’m not going to lie to you, you are in hospital, you don’t look good! So no photos of me in the blog either.

1:00am Anastasia phones Kay to relieve my anxiety about dealing with work. I am very fixated on my inability to work and worried about my lack of control and Anastasia helps me make some decisions so that I am not so stressed.

Kay is off from her other job for the next two days so I feel better knowing that she can manage. She will return to work at her other job on Wednesday, so I decide I will worry about Wednesday on Wednesday.  I will not answer the phone to anyone who doesn’t know I’m here. I am beyond dealing with any work, including the nearly completed email I was almost ready to send last night. I am frustrated beyond belief about the lack of information I have been given over what this will be like and my ability to function. Although Malik did tell me I wouldn’t be able to work, he just didn’t say why.

12:00 noon It’s interesting that my French is still coming naturally in this state. I am in a very emotional state and I have to keep focused on the positive. I asked a nurse about the infusion process and she said: you stay on your maximum dose for a bit and then they dial it back down, it’s best to ask the doctor tonight. Anastasia and I go for a coffee at the coffee shop, I hate that I am teary and emotional. I’m really struggling and have trouble even sitting properly at the table without slumping. I am aware people are glancing at me as I cut the figure of a very ill patient, dragging Roger behind me, walking very unsteadily and slumping, I don’t care. I really can’t see anyone who isn’t in my immediate vision, the wider space is a blur. We returned to the room in time for the top- up, I’m now on 32mg.

1:00pm I feel ok but I am a bit nervous. I keep fixating on that my father might phone and find out I’m here. Nick and Anastasia have told me not to worry. Nick promises he won’t let him know and he will ask Khloe, our daughter, not to let him know. I need constant reassurance on this. I am losing track of the reason why I’m going through this infusion. I have a great conversation with the nurse, La Chica, about her start in Australia. I want to catch up with La Chica when this is all over. 

1:40pm Nick arrives with fresh pillow cases. I keep forgetting that the Wi-Fi isn’t working so I ask him to write it on the whiteboard so I remember to hotspot. I keep worrying about little things, I am easily set off. The pre-information I was given was not adequate, I’m very frustrated over this. I’m experienced at managing the crap in my head but I am having trouble managing it now. We work out that when I’m alone I need a plan so I’m not stressing. Nick helps me make a plan: when I start stressing I will watch some of the shows on my USB. I discuss the episodes of OITNB with Anastasia; she says I’m experiencing it weirder than it is.

2:00pm This is not an experience that you would choose to have. There’s this whole pain threshold issue to consider, and I do need to get off the fentanyl. I am reflecting on why I’m here, and try to remember why I am here: it’s to reset my medication levels. I can now turn my head to the left and look out the window. I haven’t been able to turn my head to the left in 14 years. I feel like I’m in a weird episode of Twin Peaks except it’s not quite as strange as that.

2:35pm Nick typing – Nurse BG comes back and asks about the pain level, it is at 1, she says they want to get it to 0. I am still on the fentanyl but they will lower the dose from 25mgh to 12.5mgh later on today. The ketamine is now at 34 mg/hour.  I’m lying down with my eyes closed but I can’t sleep. I have a little bit of trouble breathing so I put the bed down flat and that helps. Perception is difficult. It feels like I’m tripping but it’s not fun, just a waste of time. I’d rather be going for a walk near home with Nick and the dog.

5:31pm I’ve made it to 40mg/h. It has been quiet, I’ve been watching OITNB. I feel a bit trippy, etc. I have a bit of pain at the back of my neck. I can’t get comfortable; I’m a bit headachy, 2/10 for the headache.

I don't have much of an appetite, and this dinner certainly doesn't help! Not even proper ice cream.

6:11pm Just had Dr Malik come in. I’m now at 40mg, and I will stay on that until Friday, four more full days! Malik said the longer I can stay on 40 the higher the chance of pain reduction after the treatment finishes. He says I can choose to reduce to a lower dose if I’m not comfortable and he tells me I can call him at any time. If I can stay on 40 until Friday he will reduce the dosage to 20, then by Saturday it will be reduced to 0. Once I have been on 0 for two hours I can go home. I ask Malik why some people want to do this recreationally and he said that some people like the disassociated state.

I tell him about my problem sleeping and he says I need good sleep hygiene, including no electronics late at night. He says I can get an additional sleeping tablet if there is an issue, but I should be asleep in 30 minutes. I tell him about the issues I had last night, and he says he will speak to the nurses. I don’t believe I should need to make decisions on everything, including how to get to sleep. I don’t feel I am capable of making decisions that I find complex, I need and expect more support.

7:23pm We go for a walk around the hospital, I am feeling very stoned. Can I do this for 4 more days? I am quite disappointed that I have worked so hard to get to 40mg only to be told that it’s not over, I have to try and stay there for four more days, I feel like the goal posts have been shifted on me.

8pm Nick goes home. I am struggling with a lack of perception dealing with Roger, I have difficulty plugging and unplugging his leads when I need to go the bathroom.

Day 5 Monday Tripping the light fantastic - the drug of clarity

12.23am After taking my sleeping pills I get some sleep.

4am I wake up and try to do a little work, but it’s too difficult, I don’t have the motor function to type and I can’t trust what I am doing.

After breakfast I have a shower sitting in the chair and get dressed and lie on the bed. I have given up trying to type and I am now writing in my notebook in scribble form. As it’s Monday everyone is back to work now so I am on my own. I put on Sarah McLachlan’s music and I really enjoy lying there listening to the songs. This is not something that I would normally do, just lying down and listening to music - normally it would be playing in the background while I was working. I become very introspective; I decide I would like to meet Sarah McLachlan to tell her how her music is helping me during my hospital stay.

I start visiting my life. All the grey falls away which must be why one of the nurses told me that ketamine is called the drug of clarity. Everything is crystal clear, all the superficial parts of my life disappear and all I can see are the important things that have made me me. The people and experiences that have been part of my life since my early 20’s come to the fore, I can see everything so clearly. I decide that I have a book in me, a book about me. I also believe I have had the best life in the world, I am very blessed and lucky in every way. Sarah McLachlan’s music, especially the song “Do You Remember Me?” helps me revisit my late teenage years, leaving Perth and moving to Melbourne on my own. Interestingly the many, many years with “previous guy” I only slightly touch on and quickly move over. I am surprised that I slightly revisit someone else who was such a tiny part of my life but whom I am so grateful for the power she gave me to make the necessary changes to my life and also for introducing me to Sarah McLachlan’s music.

I feel myself tripping a bit - Khloe had asked me yesterday whether I had been riding pink unicorns so I decide to go looking for them. I imagine myself sitting deep in the saddle and waiting for the beautiful canter stride to come up in front of me. To enjoy the canter you relax deep into the saddle and it feels like beautiful dancing. The canter is the reward for the hard work you need to do at the trot. It doesn’t offer the breathtaking exhilaration of the gallop but it has its place in perfection on a well-rounded horse. However, it doesn’t happen, I can’t find the unicorns or the canter, then I realise it is Khloe who wants to ride pink unicorns, my riding days are over. The car accident saw to that.

Instead I find myself tripping beautifully; I am lying in a paddock of flowers in a flowing dress looking stunning with wonderful scenery while being filmed overhead like a music video. Now I understand why artists use drugs to write, paint and create, it puts you in a different head space and helps with creativity because it removes you from the real world.

Last night when I asked Doc Malik about ketamine’s party drug use and he said young people like the drifting away and it elevates your mood but older people don’t like it as much as they are past having fun! That’s not true I like having fun and today has been..........I can’t find the adjective I want, floating, amazing, beautiful, serene. Nick said last night that I was fighting against the drug, so I have taken that on board and am trying to relax more. I feel sorry for Nick that he doesn’t get to experience what this is like, why do I get all the best things in life? Why am I so lucky?

The next song I don’t like, it has negative connotations so I decide to stop listening. I realise that I have to be careful not to do anything that could lead to negative thoughts and then send me into a downward spiral. I decide to write in my notebook instead.

Nurse BG comes in and asks me why I am crying, I say they are tears of joy and happiness as I can’t believe how great my life is. I messaged Anastasia to ask her to take some notes for me but when she rang back I was already writing so it wasn’t necessary. After I left hospital she told me that I had phoned her during class time. Normally I would never phone her during the day as she is a school teacher.

With help from those close to me I have made lots of good decisionos (bad spelling but at least I recognise it) to help me get through this period. I only answer the phone to people who know what is going on with me. I don’t reply to messages or emails without getting someone else to check what I have written. It’s a bit like that book I read on a woman, Sally or Daisy who had early onset dementia (after the infusion is finished I remember it’s called Still Alice). She had notes on the fridge, like “don’t go running on your own” – not much chance of that with me, I’m struggling to walk to the toilet! However we have put in safeguards so I can relax. I am so fortunate to have intelligent, open -minded people supporting me and I know to stop if anything starts to become a bit dark. Hold on, it’s now 11.30am. How did that happen?

I forgot to say earlier that as beautiful as the tripping was there was also a niggle at the back of my mind that if you did that all the time it would get boring. My Spotless Mind. I might try and go to sleep and if that doesn’t work I will watch OITNB.

Nick messaged me and woke me up from a very deep sleep. I am stuttering and having trouble coming back to the present and now. BG comes in and asks me whether I normally stutter, I say never in my life, it’s very strange and a little disconcerting, luckily it passes and I eventually feel a little more present.

1pm I discover that I haven’t taken my morning pills, very strange, not like me at all. I am more “out of it” than I realise.The coffee I get with breakfast isn’t very hot so I order hot milk to come with it but it hasn’t come the last two mornings so I try and write “hot milk” on the order, I find this very difficult.

Khloe phoned, then Nick, I dictated some notes from the morning to him and tried to eat some lunch. I told Nick that our real estate agent had phoned; he said he will deal with it. I thought of the lovely time I had spent sitting on Mr Garden Bench outside, I enjoyed my time there but I won’t be visiting for a while as I am now confined to the hospital as walking is very difficult, I am very unsteady and doddery. I tried to eat some lunch but I really have to force myself to eat as I don’t have any appetite but I know I have to eat if I want to walk out of here on Saturday.

Why do all the good things in life always happen to me? This morning I finally understood the term dying happy when your time comes. Mine hasn’t come yet because I am one of the lucky ones who get to live a wonderful, outrageously happy, rich life. The only question left is how can I pass it on to the other important people in my life so that they can also have a wonderful life?

I remember that lovely saying that they have in Africa: God gave white man the watch and black man the time. I’ve tripped the light fantastic and as my friend Julie’s young granddaughter says, I winned, I winned!

7.20pm Nick writing: After lunch I read the newspaper for a while which I enjoyed. I spoke to Khloe on the phone and Kay arrived at 3pm. We did some work and sorted work things out. She left at 5pm and bumped into Rose on the way out. I realised when I was talking to Rose that I was talking very slowly, so I sped my speech up. I had a lovely couple of hours with Rose (not sure how it was for her). She bought me some lovely flowers from her garden and I also got a nice message from Marie.

7pm Nick arrived and Rose left saying she might come back Friday. Julie phoned while Kay was here, she spoke to Kay and said she was sorry she hadn’t been in and was trying to make some time. Nick wrote this for me, and that has been my day.

Doc Malik didn’t have much time tonight but he said he will take me totally off the fentanyl. Nick and I went to the cafe and I told him about my day and asked him how him how his was. Anastasia texted and when Nick left I texted her back at 8.30pm to see if she wanted a chat or I would watch OITNB for the two hours until bedtime. I chatted with Anastasia for a while and asked her to take some notes. Then I watched my show but I fell asleep and was woken up at 10.40pm for my sleeping pills (gosh my handwriting has improved).

The only glitch was that Nick didn’t take my call at 11pm, but it doesn’t worry me, it’s not that important, I will go to sleep. 

Day 6 Tuesday I do not have to be first but I will not be last!

I slept until 4am, my mind is too active to sleep and I have slightly annoying restless legs. One issue I had in the night was that I knocked over my glass of water which is not unusual for me. It went all over my throw rug so I had to get up and adjust it. I would have liked to sleep longer.

I chat with Red Lips for a while and she tells me they call ketamine the drug of clarity, I tell her that I would like to speak to other patients going through this experience and see how they are feeling, what they are experiencing etc. Red Lips says the other patients are two young men and that one is happily enjoying the ride and doesn’t have a lot of life experience, but the other is feeling quite sad – the drug of clarity.

She says that the smokers who are on the infusions still manage to get themselves up and outside to have their cigarettes and there they meet others and they make friends. I can see how you would feel connected with other people going through the same experience as you but I tell her that I have no interest in speaking to young men. There is nothing they can share with me about life. How could they be in this situation when they are so young? The nurses aren’t allowed to divulge any information and I am no longer interested in talking to other ketamine patients.

I lay there happy until 8, reflecting on what a wonderful fortunate life I have. I am in a happy place. Nick and Khloe have dealt with my worry about my father finding out about it. Friends and family have removed all the stresses from me so that I can do this.

Red Lips then “lied” to me. She said they had swapped the syringe over during the night and asked me if I remembered them touching me so as not to startle me. I said that no, I didn’t remember anything and that’s when she lied, she said I was snoring and I should put that in my blog! Well, we all know that I could not possibly snore, so I will have to keep an eye on Red Lips (she is gorgeous though). She and Beautiful Girl are my favourite nurses!

I was a little worried for a while about my restless legs but I told my legs that they had to stop as they were too annoying and after that they behaved themselves, like most people do if you take charge. The people that don’t behave themselves, well you have to walk away and let them go; they are not your problem. I make a note to tell Nick I need tissues and wipes.

Let’s talk about the enabler in the room, yes Roger that’s you – the man with only one word to say. The moment you open your mouth I shut you down by pushing that little arrow on the far left of the screen. You are brainless noise that keeps popping into my head and interrupting me, you have nothing interesting to say, you have no place in my world. Roger, I have appreciated your help but I will be glad to hand you over to someone else at the end of this. Even though there are no hard feelings I hope I don’t ever have to see you or any of your family again. I have a life to lead, places to go, things to do and people to meet, I don’t have time to waste with this stuff. I need to get Nick out of his drudgery work so we can enjoy the rest of our time together. I’m going to read the paper for a while or have a shower.

Then I have a major problem! A woman from administration comes into my room and sits down in a chair next to my bed. She didn’t ask if it was ok with me to come in my room, and sit in one of my chairs, she didn’t even knock, so much for respecting patients, there is no privacy in hospitals. She then tells me that there is a person more worthy than me who needs my private room, they are not the words that she uses but that is the implication. She tries to emotionally blackmail me by saying that she isn’t asking for me, she’s asking for them. I said that if I had to give my room up I would be stopping my treatment and going home, I will only leave this room to go home. She said she would have to talk to the manager and left.

I am not a selfish person, I do not need to be number one but I will not be last! I have worked hard to get here and stay here. I have been good, I have not given in to this pain and crawled into a hole. I have not taken to my bed, I have continued to work. The day after my accident I went to work, I couldn’t put on my own shoes, and in hindsight if you can’t put your own shoes on you shouldn’t go to work! I have ticked all the right boxes and got on with my life, so why should I be the least important patient in this hospital?

That guilt-trip woman has to go. I did not do this to myself, I did not go through a red light and hit me, someone else did this to me! I have worked hard to make the best of the situation, please let me finish my treatment in privacy.

By the time the lovely lunch lady Molly came to bring me my meal I was pretty well hysterical. I was on the phone to Nick and was sobbing to him telling him that they were derailing me, all that hard work I had done to stay positive has been ripped from me by a heartless administrator. How dare she do that to me, how can she be allowed to come into my room and shatter all the hard work I had done, how? 

Sweet Molly came back with the manager Rolf and a lovely nurse, who were very kind and understanding. They supported me and gave me half a Valium, Nick was worried they were trying to shut me up with the Valium, but I was a mess and definitely needed to calm down. The nurse asked if there was anyone that could come and sit with me but I said it’s Tuesday, everyone is at work. Nick spoke to Rolf the manager and it is all sorted, I have this room until I finish. I have calmed down now and am trying to get back to my happy place. I do not have to be first but I will not be last!

                                  As hard as I try I can't seem to write milk without a double l.

I try to sleep but keep getting hung up on the morning’s drama. I managed to talk to Kay about some work and told her I was having trouble getting past what had happened to me. Kay said I had no choice I just had to move on, and she told me later that I answered her with a firm: yes, you are right, that is what I will do! I am a black and white personally normally and this drug is making me more so.

I watched my OITNB, trying to improve my mood. I was also trying to control my restless legs so I decided to go to the pharmacy about buying some wipes. I have diarrhoea which is apparently a side effect of withdrawal. I walked to the pharmacy dragging Roger with one hand and using the support railing on the wall with the other. Luckily being in room 1 means the front door and the pharmacy are very close. I went to the pharmacy to find out how much they cost and then went then back to my room to get money (I don’t know why I just didn’t take money with me, nor do I know why I didn’t charge it to my room). I took $10 and returned to the shop and bought the wipes. This seemed like a massive achievement to do this on my own, like a normal person. Later in the afternoon when I got up to go to the bathroom I found $10 lying on the bedroom floor, maybe I’m not that normal person after all. Where did it come from?

Dinner arrived and it was very strange; risotto with chips - (carbs anyone?), zucchini and corn.

The food has been really poor and tasteless (the sprinkled pepper in the photo is from the pepper grinder I brought from home). I watched the 6pm news, I wish the nurses would wear name tags or write their name on the whiteboard as I am really struggling to remember their names and they are all so lovely and caring to me that I feel bad when I can’t remember their names.

Khloe came to visit and I had to explain to her why I deserved the private room, there are so many reasons. She is old enough now to know the truth. I have worked hard for the past 14 years not to let the accident ruin my life, I have never taken an anti-depressant or any other type of mental health drugs.That isn’t to say that I haven’t had many teary and difficult days, there were lots, especially in the first few years as I learned to adapt to living with constant pain. I could have easily given in and let it destroy me. However, I decided early on that I was not going to be that person, that the best way to manage it was to try and pretend it didn’t exist.

I first heard the words “pain management” many years before my accident and I struggled to understand the term. How can you manage pain?  Either it’s there or it isn’t. How do you manage something that you have no control over? How naive I was. However the more you dwell on pain or any problem in your life the bigger and all-encompassing it becomes. I have tried not to let it define me, I have chosen to make it only a small part of my life. Nick arrived. Malik came, I told him that I had had a horrid day.

8.30pm Nick and Khloe left. The only problems I have now are the diarrhoea and a persistent cough. I watched OITNB, lots of lesbian sex.

11pm Red Lips came in saying she had Temazepam and came in peace, she’s a funny girl, I like her. We had a lovely chat. Such gorgeous girls work here, I hope they are appreciated.

At midnight I went to sleep but I woke up twice during the night with a nearly busting bladder - by the time I unhook Roger and we get to the bathroom I am lucky to make it. Between the coughing and the sneezing I am so glad I had that bladder sling put in a couple of years ago.

Day 7 Wednesday I winned! I winned! I winned!

6am I wake up with some pain at the back of my head that I hope that will go away. I haven’t mentioned it before but I do hear a sound now and then that sounds like a door not quite shutting, it slams and then bounces. It does this twice and it is always the same but it only happens intermittently. I know it’s not real as there aren’t any doors behind me so it must be a type of hallucination. It’s very annoying.

Apparently one of the young men (very young) with a long-term back injury received no relief from the infusion so they are stopping his treatment.

My lovely nurse today has a two-year-old boy and she lives in a suburb fairly near where I used to live. She says I can have two Panadiene Forte for my headache. I have breakfast, shower (still sitting on the chair), get dressed and check my phone. Marie has texted asking if she can come and visit. 

How lucky I am! I have lovely people around me, why am I so lucky, how did I get to have everything that anyone needs in life? Beautiful friends, a wonderful partner, a gorgeous daughter, sufficient money to travel and enjoy life as long as we aren’t extravagant.

Marie and I have a lovely morning, we go for a little walk around the ward. Her lovely niece brought her up to visit me because Marie has been seriously ill for the past eighteen months and can’t drive.

After Marie and her niece leave I listen to music and read the newspaper. I have to read most articles a few times to understand them and I find them more interesting than I normally would. I am easily amused in this altered state.

Nurse Red Lips told me that I have won the ketamine race! The only other person left having the infusion (he was young with little life experience and having fun with the tripping) had his infusion stopped. He had watched something dark on the television and it had upset his head space and he had gone back to being a child and wouldn’t go to the bathroom on his own as he believed there was someone in there, so the doctor had stopped the infusion.

I messaged Martina, my neighbour who helps administers ketamine infusions. I sent her a picture of the mug she gave me that I had brought to the hospital with me and told her that I had winned. I hope she is proud of me, but I reckon she knew I was going to.

In the evening Nick and Khloe come to visit. I get braver in my walking as I am so unsteady on my feet and we leave the hospital and we visit Mr Garden Bench. Some person smarter than us had turned the bench around so he now faces the garden and not the cars. We sat there and talked and enjoyed the lovely evening as a family together. 

At about 8.30 we walked back before we got locked out of the building. The sunset was grey and pink, Khloe’s favourite colours. The nurse said she saw us through the window sitting out there and we looked like a lovely family. What a nice thing to say. Khloe went home and Nick and I had a cuddle on the bed and then he went home too. Malik didn’t arrive tonight but it wasn’t important, all is good.

Kay phoned, we talked for about 45 minutes, I was lying there with the phone on my chest with the loud speaker on with my eyes closed while we were chatting. When we finished I thought it would be stupid to wake myself up again by watching a show so for the first time in my life I would go to sleep at 9.30pm. 

I pushed the buzzer for the nurse and a new nurse came, I asked her to remove my clothes from the PICC line and to please get my pills. She said “I don’t know how to do it”, and asked me “do I need the key to turn the machine off”? I said I don’t know, don’t ask me, I am on ketamine, I said that normally they just disconnect it quickly and then reconnect it. I don’t think they use the key but I can’t be sure, she leaves to get help. 

I wait and I wait, I put the bed flat, I am so tired, so much for going to sleep early. At 10.30pm she comes back, she is obviously very frazzled, these girls are so overworked. Another nurse shows her how to disconnect and reconnect quickly, key not needed. I ask for my pills again but she is so stressed she asks me if I can tell her what I have. I say two Temazepam, she says is that all and I say yes. I am slightly concerned that the ketamine patient’s word is being relied on. I feel this is wrong but I feel sorry for her as she is under so much pressure and I know I am telling the truth. I say I have been waiting for an hour, she apologises and says they were doing a transfusion. She comes back with the pills and wishes me a good night’s sleep. She’s a nice girl under too much pressure.

Day 8 Thursday

I managed to sleep but only until 3am, bummer. I lie there until 5am and then I am sick of it so I sit up and write this. For the first time since 2003 I am able to lie on my left side, normally I can only lie on my back or my right side to sleep. The nurse says she thinks it’s the ketamine that is stopping me from sleeping. It has to be, as sleeping is something I normally do well! I am now going to fill in the time until breakfast reading the newspaper. I have one more day to go, I am nearly there. The aching legs are a real nuisance so at 5.45am I ask for two Panadeine Forte.

That double door (hallucination) is still banging. I read the paper until Nurse Ben from the Philippines comes in at 8am and gives me my tablets. He is very nice with a pleasant, cheery face. I speak to Nick on the phone, Ben says they might start bringing me down tonight which means there is a slim chance of going home tomorrow. My check-out day is meant to be Saturday but I was told if I felt well enough it could be brought forward to Friday. Nick says it will have to be after he finishes work on Friday. That is good for me. Maybe Jenny can bring Pippa to the hospital and we can go home together.

I start hearing people talking and laughing, and they are inside Roger, it’s like he is a radio. How bloody ridiculous, we will be having none of that! I tell Roger “the radio” off and to cut it out, and it works and the noise stops but I don’t have so much luck with the background slamming door but hopefully it will stop soon.

I put on some music and relax and nod off and then Marie arrives, her cousin Magdalena has brought her up. Marie and Magdalena are angry and upset that Roger has now run out of special K and is carrying on at full voice. I rang the buzzer over half an hour ago but they still haven’t changed the syringe over.

I get up and drag the screaming Roger to the bathroom which is flooded from my shower over an hour ago. It’s all the way to the door, it obviously suffers from poorly designed drainage. Marie works as a nursing attendant at a large public hospital and she is horrified that I could fall over so she starts to clean the water up. Magdalena goes and finds a cleaning lady to mop it up. Magdalena is a nurse at a public hospital and neither of them is impressed at how I am being cared for. They both say waiting that long for a drug of dependence is not acceptable and that it would not happen in a public hospital.

Eventually after another half an hour (so an hour in total after it ran out) my syringe is swapped over and we go out to Mr Garden Bench and enjoy the warmth of the sun. It is so wonderful to be outside, I am so lucky that Marie has come to visit me again. I prattle on high as a kite until it is time for them to take me back to my room as they have things to do. 

Marie has been seriously ill since May 2016 - 18 months. How does she do this? She is so strong and positive, such a wonderful role model to people around her. Back on my bed Magdalena sees me reaching in my drawer for my purse and says: do you want a coffee? I ask her how does she know that is what I want? She says she does it all the time in her job. I wouldn’t think to ask a nurse to get me a coffee as they have proper work to do.

Before they leave Magdalena takes a photo of Marie and me holding hands. We have been friends since 1993, 24 years. When she is better, maybe in the spring we are going to go to Tasmania and have a girls' holiday together. They leave and I write this.

                                                                 Marie and me.

I am worried that I am coming across in my writing as a saint but everyone knows I’m not. I am a demanding person with very high standards and I do not tolerate fools but this drug is softening me so only the good parts of me are showing. The other side that rubs people up the wrong way will return in a couple of days and it might return with a vengeance! Khloe will get her bossy mum back and not the sweet mum she’s had for the last few days who will let her hold her hand.

I get up to get a cardigan for my shoulders, (so much for thinking I would be hot in hospital) and I find myself dancing like no one is watching, I’m not moving my feet but I am enjoying myself. Julia and Angus Stone’s music is on Spotify, such sweet, young siblings.

Lunch arrives. I will make myself eat the sandwiches later, I have the fruit and cheese put in the fridge for afternoon tea. They need to throw out yesterday’s fruit and cheese as I didn’t get to eat them. Hopefully I am losing some weight - can you lose two kilos in a week if you stop drinking wine, barely move and barely eat? I get a phone call from an unknown number. I let it go to message bank, Nick will sort it out tonight. That door is still double-bouncing behind me. Can someone please shut it (bloody hallucinations)!

The lovely lunch lady Molly comes in for my tray. I thank her for caring for me the other day when “the administrator” tried to make me move rooms. She said: you remember me? I said: yes you helped me, she said: I am like that I can’t see someone upset. I told her how tonight or tomorrow I was going to be coming down off the ketamine and walking into my new life. When I told her about my accident she got a bit cross with the man that went through the red light but I explained to her we couldn’t be too angry with him as there were no drugs or alcohol involved. The police thought he made a mistake and saw the green arrow and thought it was for him and went straight on. I told Molly I could have made that error and that Khloe and I heard him screaming “what have I done, what have I done?” repeatedly as we crawled out the overturned car window. I also saw his face and he was mortified. We can’t hate him, I think it’s best that he doesn’t know how it has affected my life.

I’ve still got the cough and the banging door but I can manage them. I roll onto my left side, such a strange feeling to lie on my left shoulder. I might even be able to see my family arriving through the window before they knock on the door. I enjoy the luxury of lying on my left side and then my day gets ever better. La Chica arrives and says she will be my nurse until 10pm. 

My auntie and uncle come to visit me and stay for a while. My auntie said later that it was the funniest hospital visit she had ever had as I chatted non-stop about Lucing in the sky with diamonds and tripping the light fantastic. After they left I dozed, read the paper and listened to music for the rest of the afternoon.

At 6pm I turned on the news. Now my arm is starting to hurt where the PICC line goes in. The TV is in the wrong position. It is too high and too far to the left, it hurts my neck and my arm gets worse. I ask for Panadeine Forte and La Chica brings them promptly. She explains that she can stop the ketamine if the pain becomes intolerable. I said I would take the pain-killers and manage.

Nick and Doc Malik arrive. Malik asks me why I am squirming around in bed and I tell him that I am in a lot of pain with my arm and my neck. Malik says he will arrange for an ultrasound of my arm to check for a blood clot. I tell him I have something to show him and I open a drawer that has six small bottles of wine in it. 

Every night I have ordered white wine with dinner and put it in the drawer. I thought it was absurd that a person high as a kite on ketamine should be offered wine. He said the wine was fine, I could have had my wine every night. Unbelievable! He then told me a story about a priest he was treating who went a bit overboard with the wine though and he had to tell him to back off. La Chica brings a plastic water jug full of ice and turns it into a wine cooler and pops a bottle in to cool down.

I take my glass of wine and Nick and I go to visit the charming Mr Garden Bench and chat for a while. All my pain goes away. Moving is always good - staying in one spot always increases the pain and going for a walk generally improves it. It was lovely on the bench.

I start coming down tomorrow, Friday lunchtime and I should go home Saturday at 10am.

10pm Roger runs out of ketamine. Nick goes home and 40 minutes later I am still waiting for my top- up. Apparently the nurse is transferring another patient; I feel the wait is too long, they should have more staff. I finally get topped up and given my night meds. This is when I realise I wasn’t given my extra pills last night, the ones I have to take to make the ketamine work, I think they are magnesium. You really shouldn’t rely on the word of a patient on 40mg of ketamine. I get to sleep and wake just after 1am and I drift in an out of sleep until the sun comes up at 6am and I get up and open the blind.

Day 9 Friday Goodbye Roger

This is my last day on ketamine. The night nurse comes in and they change my ketamine before it runs out – they stopped Roger from complaining before he started. Brilliant! I opened the laptop and felt I could manage to do a little work that had come in overnight. I knew I shouldn’t, that I should wait for Kay to wake up, but it was pretty simple and I triple-checked it before I finished. I read the newspaper and started to look forward to returning to normal. Apparently at midday they will start bringing me down and maybe at midnight the real Karen will return. The one that is not so gracious, warm and forgiving, the one that rubs people up the wrong way, but at least the real Karen will get to sleep through the night.

The door is still banging, the back of my neck is a little sore and my arm where I have the PICC line hurts a little. At 7.30am Nurse Kerala arrives - what a clever girl she is to get from the backwaters of beautiful Kerala, India (I have been there, on one of their dreamy boat trips), to being a nurse in a private hospital in Melbourne. Kerala girl tells me I might be able to make it to a friend’s party at Docklands tomorrow night. Which would be nice I would like to be there for him, he is such a lovely friend.

7.35am I speak to Nick on the phone. He was off to work early as he had woken up at 6 when I did. We made a bit of a plan for Saturday when I leave. We will pick up Pip the dog, go home and rest and then maybe I can go to the party for an hour or so. I like that plan. 

After having breakfast and a shower Roger and I go for an ultrasound to check the pain in my arm.

The results come back showing that I don’t have a blood clot. I return to my room at 10.30. Marie arrives immediately. It seems that everything I want and need is just happening perfectly – amazing timing. We both rest for a while, me on the bed, Marie with her eyes closed in a chair and then we go for coffee in the cafe before her son John arrives to pick her up at 12.30. I wave to John from inside the front door, Roger and I can’t go past Roger’s rumble strips (like speed bumps for cars) on the floor in front of the front door without help. 

As soon as I get back Kerala girl arrives. Apparently she had come in earlier while we were having coffee. She has a beautiful smile. She drops my ketamine 4mg to 36 and I am on my way to coming down and going home. Yay!

At 1pm I am on the phone to Nick and Kerala girl comes in and says the ultrasound has shown a small thrombosis (I am not surprised they found something as I know the difference between normal pain and pain when there is something wrong). They remove the PICC and replace it with a cannula in the back of my left hand. At 1.30 I drop another 4mg, I am getting there!

When I fill out my menu I finally manage to spell it with only one L. 

At 1.30pm Kerala girl hands me over to Beautiful Girl. What luck I have that BG will look after me until 10pm, she and Red Lips are my favourites. I say goodbye to Kerala and thank her for caring for me so wonderfully and explain to BG how hard Kerala’s journey must have been to get here. However, I know BG has her own story. I haven’t heard it yet, one day she might share it with me.

These girls are worked so hard, they don’t spend more than a couple of minutes doing something that might not be considered essential work, like talking to a patient high on ketamine. They have a punishing schedule to keep, they have worked so hard to get here and they have to keep moving forward. They can’t slow down or they know someone else will pass them and it will all have been for naught!

That door is still banging. How low will the ketamine need to get for this annoying hallucination to disappear?

Doc Malik arrives and dangles a carrot. He asks me if I would like to go home tonight. I tell him that is too hard a decision for me to make, I want to do the right thing and not jeopardise my hard work. He tells me I have done it, it’s over and I can go home! One tear runs down my cheek. I hadn’t realised how much I wanted to go home, I have been keeping myself in the zone, the right head space to do this, to make it through to the end.

We discuss how I will be from here on, he expects that pain-wise I will be the same as before. I can manage that, I know what to do. He says he doesn’t believe fentanyl works after a while and probably the only relief I have been getting is from the Panadeine Forte. He gives me permission to go to the party, winned again! I think someone has finally shut that door as I haven’t heard it for a while. Damn! It just banged again!

Just before 5pm Roger knows I am nearly done with him and starts making his presence felt – beeping away. I feel my eyes starting to open up, they have been half closed since last Saturday lunchtime. I message a few friends with my news and they all send me lovely messages back. I notice my handwriting starts to improve, I am coming back.

I get a message from Martina, saying she could feel it in her waters that I would be busting out tonight. Nick leaves home at 6pm to pick me up, Roger and I say goodbye. No tears there, I am happy to see the back of him! Then the cannula is removed and I am told I have to wait an hour. I walk four laps of the ward, the first time I have been able to walk any distance unaided since the infusion started. I then go to Mr Garden Bench to wait for Nick and give him a surprise when he arrives.

It is lovely getting home but not long after arriving I start to struggle with lower back pain, which I have never had before and I try walking around the house to alleviate it. I get quite grumpy, I suppose you can’t be “up” for that long and not come “down”.