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.