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.