Day 24 – Saturday

I had a great night’s sleep but still wake up with aching legs so reach for the Tramadol SR again. At the start of leaving for a walk to a cafe for lunch I announce that I am back, I feel like me!

After lunch while walking home the fatigue starts again. I figure I had a pretty big day yesterday and I lie down for half an hour. Later on we head out for a walk, at the 1.5 km mark I feel pretty tired so we stop for a drink and I manage the 1 1/2km walk home again easily. I think tomorrow will be my last daily blog writing.

The thought of the “administrator” can still upset me, after 14 years of enduring and surviving, the fact that she nearly brought it all undone distresses me. How could an “administrator” be allowed to nearly derail my treatment?

Day 26 – Monday 5 weeks since my admission to hospital

In the morning I go for an appointment with Jacques as I have back pain. He still thinks I am a bit mind-affected but I feel fine. I just need to shake off the tiredness and all will be good. I drive to my follow-up appointment with Doc Malik.

I explain to Malik that I am taking four Panadeine Forte a day and an occasional Tramadol SR and now and then Tramadol QR (quick release). The downside is I am getting three migraines a week which is a bit of a worry. He suggests the migraines are codeine-related and tells me to stop the Tramadol QR and swap one Panadeine Forte to one Panadeine Extra and thus reducing the amount of codeine and to try this for a month. He says it needs to be done slowly so my body copes with the withdrawal. I’m not impressed at having to cope with more withdrawal.

When I tell him that I was mind-affected for three weeks he is surprised and says that it is very unusual. He also tells me that I am not to call myself an ex-junkie, that I was drug-dependent not a junkie.

Day 27 The following day

I am very pleased to be trying the new medication regime but I’m not having a good day. I take one Panadeine Forte, one Panadeine Extra and one Tramadol SR on waking but the pain is still not good. Four hours later I repeat the Panadeine Forte and Extra but I still don’t obtain any relief. By 9pm I am feeling quite miserable with the shoulder/neck pain so I take one Panadeine Forte – this is not fun.

For the rest of the week I struggle a bit with the pain, continuing the one Panadeine Forte and one Panadeine Extra.

Anastasia's perspective

When Karen first told me about the ketamine treatment it was almost like she was telling me that she was going to do something that she was ashamed of. She didn’t want anyone to know. This was more an indication though that she is a very private person and only shares with those she trusts.

Karen’s anxiety leading up to the treatment was reasonable for someone doing something that they could find pretty much no information on. As a fellow control freak, she was putting herself in the hands of others. Knowing that she would probably not be in control of what would happen to her and possibly even what she thought and said. No mean feat! The fear of sharing a room was present in every conversation we had leading up to the day she found out that she could buy the room. The need to prepare, have things to do and worrying about her business also weighed heavily on her.

I spoke to Karen on the phone the first and second day she was in hospital. Mainly around the process and frustration that although she checked in on the Thursday, she couldn’t start the treatment until the Saturday. I was worried. Karen sounded very stressed. I wondered how Nick would cope. At least she got the private room. There is no way that she could have done this in a shared room. I planned to visit the next day.

I texted Karen just before 8am on Saturday morning. I would never have done this normally as there usually isn’t a chance of getting her before 10. With the morning regiment of hospital care though I was pretty confident that she would be at least awake and needing distraction. She had in fact been up and dressed for an hour. I asked if she needed anything and she said a microwave and a kettle as she hated that nothing was hot. I offered to bring coffee but there was a café there. Not being dressed yet myself at that point, I threw some things together and headed over to the hospital. I’d expected her to be up but not necessarily ready for me to visit so early.

I found Karen dressed in her room. They had her hooked up to the machine that she aptly named Roger. I got the tour; a window without a view but ample light and a little ensuite. It wasn’t much after 9 and she was well and truly ready to get out of there. Karen had called Nick to say that I would be there and he said he’d be in about lunchtime. We wandered down to the café to have a coffee, knowing that Roger’s schedule would take priority over ours. With a little bit of time up our sleeve we negotiated the segregated mat and automatic doors and escaped to a park bench a short distance from the entrance way. Apparently Nick had not been prepared to take this cross country adventure the day before. We took a photo and chatted. She was worried that she’d lose her sense of humour. Nick took a much better photo which she sent to me later that day. He had taken her out after all.

Upon returning to the room for Roger’s top up, we discussed what she might like Nick to bring from home. We came up with a short list of items and joked about adding in a few kooky ones. I believe a painting for the wall and a statue were mentioned. Nick is a good sport and far too sensible to take our nonsense seriously.  Karen seemed in a heightened state of wanting to be in control and just waiting for the effects of the ketamine to kick in. Shortly after Nick arrived I departed, thinking that I would return tomorrow. I remember thinking that it was such a lonely place by yourself with your own thoughts.

  

I texted Karen at 6:50am (boy was I game) the next morning (Sunday). I’d been writing school reports so was up and about. She was ready for me and had told Nick we would do the same as yesterday. She texted me, “But I have to warn you, I am not like yesterday, I am not normal, bring work to do”. And she wasn’t.

I had brought report stuff to do but really didn’t do any of it. Karen was all over the place. She was worrying about getting her pain meds. Very frustrated at not to be able to get the internet working and as the morning went on going round in circles in emotional conversation. Not very Karen like at all. I was told plainly at one point that I was treating her like a child and shouldn’t. What she didn’t realise was that she kept repeating or asking for the same information. The nurses said this was normal.  She was frustrated with the top she was wearing and I helped her swap it over. I checked at the desk and found out that the internet was down across the group of hospitals and that it was being worked on, but unlikely to come back on today. We only ventured as far as the café today as she was unsteady on her feet and needed help maneuvering Roger.

To cope with the anxiety, I kept trying to draw her back to positive thoughts. She’d start worrying about her dad finding out. I reminded her that Nick wouldn’t let that happen. But then she was worried that she’d make Nick cross with her with all her neediness. I reminded her that Nick had more stock than that and that he would cope just fine. Then she’d worry that Kay hadn’t called her back about work and there were all these things to resolve. She didn’t trust herself on the phone and asked me to call Kay, who also reassured her that everything that needed to be done was being done. She spent a lot of time worrying that they’d forget to give her, her ‘real’ pain medication. She’d had a bad experience with a nurse who she had named an “orderly” the night before and this was playing on her mind. He’d refused her sleeping tablets after 2am as was hospital policy, been very abrupt according to Karen and given her a fright at one point which caused her water to be knocked over. Not a pleasant night for her. She got me to speak to the nurse about getting two sleeping tablets that night. When Nick arrived she did not want us to have a conversation privately about how she was doing. We did anyway. Sorry Karen.

She called me about 6pm that night and was still very agitated. I had to use lots of calming phrases and we talked through logical plans. She was super worried about not getting the sleeping tablets at 10pm.

I messaged her at 10:30 to see if she had gotten her sleeping tablets.

Karen: “The “orderly” has brought them I’m freaking out a bit I didn’t want to see him again.

Me: Hopefully after you take them you’ll sleep though. If you’re really worried ask to see another nurse. Just say that he makes you anxious because of the drugs. You’d feel more comfortable with a female.

Karen: It’s all sorted a nice nurse has just left.

Me: Perfect! Now you can take your tablets and get a good night sleep.

Karen: Done thanks for everything

Me: My pleasure. I’m here if you need me

Karen: Gracias I just pushed Rogers button to shut him up – I said I am well loved

Me: Night Roger Night Karen

Karen: Roger that

Me: Lol

Karen: I can still do it

Me: Yes you can but sleep now

Karen: Need to write that I suspect Michael Jackson mother’s milk that he died from is similar to this treatment

Me: Done

I messaged her at 6:50am the next morning (Monday) and she asked me to call her. Her biggest worry was that she would have no visitors during the day and how would she occupy herself.

Karen messaged me to call her to take notes at 10:30am blissfully unaware that I was teaching. I called on a break and took notes.

I called in the evening after Nick had visited. She had been hearing things and was very unsure of herself.

She messaged me at 2pm the next day (Tuesday) asking to talk. She was petrified that they were going to move her into a shared room. An administrator was trying to convince her to move. Pretty unprofessional from my point of view. I rang Nick after calming her down. He was dealing with it. It was sorted.

We spoke each day until she was able to go home on the Friday. It’s an experience to see someone that you care for, lose themselves for a week. Not one that I’d like to repeat too often. I worried for her to the point that I nearly took time off work to go in until arrangements were made for other friends to visit during the week.

It surprised me that it took so long for the drug to lose its effect on Karen in the weeks that followed her treatment. Being able to wake up earlier without the fuzz though, must have been an amazing feeling for her.

Karen is a strong capable woman who never complains about her pain. Nick is an awesome man whose strength through this process was amazing. They are both very lucky to have each other. I admire Karen for going through this process and putting this Blog together so that others can learn from her experience.

Being Karen’s daughter

I remember the day we had the car accident, possibly the day the world changed for my mum.

I remember the man who hit us running towards our upside-down car. He was screaming: WHAT HAVE I DONE? Well, what you did was make my mum not able to live her life to her fullest potential. I am mad at him still. As a result of your actions you hurt someone I care about.

I remember asking mum about the man who crashed into us: Will he be sued? Mum said: No, I don’t believe in suing people. However, she did say: If I could just write him a letter on how he has ruined my life, then I would want to do that.

I remember the pain afterwards, and for the following years as she was trying to get on with her life. She pushed boundaries to see what her body would allow her to do. This impacted her life greatly.

When she told me how much medication she was on all I could think of was, how are you still functioning? I have a little knowledge of medication because of my profession, and I was shocked with what she was taking. When did this get to be this much? How did the doctors allow her to be on so much? How is she managing to get up every day? The answer is; because she is a strong mum who has to do what she has to do; which has always been the right thing.

Mum notified me that she would be going into hospital for the ketamine treatment to hopefully get rid of the pain and also cease the medication. I was secretly worried. What if it didn’t work, what if she was in more pain? I knew she would get through the ketamine treatment. I have known her for 28 years, there isn’t much that my mum doesn’t put her mind to that she doesn’t accomplish.

On ketamine she was dazed. Her eyes gave long, large, blinks. She had trouble keeping eye contact with me. She was highly emotional, and her speech was slowed. Trying to keep a positive attitude with her was troublesome. She was determined not to let the bad thoughts get in her head. She would count the other patients who weren’t able to continue the treatment; this would secretly make her more determined to finish.

She had a large tube coming out of the inside of her arm (this looked painful). She told me that they had to take an x-ray before they could put the tube in.

We got into one emotional argument (tears in two seconds from me), which I should have not entered into. I was trying to help her see past the private room issue. I knew that everyone else had failed, so I am not sure why I thought I would get through. I had tried a couple of tactics, being nice, being positive and being logical. THEN I grouched at her, telling her there are sicker people out there. Unfortunately, this did not go down well. She told me that she didn’t ask for this. She didn’t ask to be in pain and she didn’t ask for this person to run a red light. I backed down, as I understood that she was right. She didn’t deserve this.

Mum talked to me about what she was doing to keep herself occupied in hospital. She told me that when the TV show she was watching was getting a bit too much she would stop watching it. She was not going down that dark rabbit hole.

Luckily Mum hadn’t lost her sense of humour. Every day she ticked the dinner menu to include a small bottle of wine. She stashed them in her drawer for when she left and couldn’t wait to post it on her blog as being totally inappropriate (she still ticked it!).

She developed a bad cough that she thought might have been from flowers someone had given her, so we removed those and gave it to the nurses. However, the cough didn’t go away, she was sucking on Strepsils, but it was making her agitated.

I visited her three times after work. My dad and I took her for slow, tortoise walks around the hospital. One day we went and sat on a park bench. She seemed to do better when we were outside, more relaxed and calm. I didn’t want to leave her because I didn’t want her to be stuck with her thoughts, on what will happen in the future, or if she will be kicked out of her private room.

Honestly, it was hard for me to see her like that, but I wanted to be there for her.

I was a proud daughter when Mum had finished her treatment. I hope it continues to work for her as she deserves not to be in pain anymore. Her health is important and therefore she needs to not be on so much medication.

Mid April 2018 - 5 months later - so where am I at now?

Medication-wise I am taking Tramadol SR 100mg on waking in the morning and then topping it up with one Panadeine Forte and one Panadeine Extra once to twice a day and on going to sleep I take 10mg Endep.

Pain-wise I would say I am sitting on a 6 to 7 most days so it certainly could be a lot better. I visit Jacques the osteo more frequently than I did before the infusion, and of course I have some days that are worse than others. The back pain has settled down but still gives me some trouble if I stand too long which is unfortunate as I didn’t have this before the hospital stay.

The biggest difference for me is my sleeping/drowsiness. When I was on the fentanyl I would struggle to wake up and drag myself out of bed at 9.30am and I could easily sleep to 11.30 if I allowed myself. Now I am awake between 7.30 and 8am, and I am not groggy when I wake. When I was on fentanyl I could fall asleep at the drop of a hat. Leave me alone in a chair or on the couch and in five minutes I would nod off and the same if I was a passenger in a car. This no longer happens. I even tried to doze on a long car trip and it wasn’t possible so I am more alert and that gives me more time in my day.

Was it worth it?

Absolutely, to no longer be addicted to such a strong drug is a huge relief and I am pleased I went through the infusion. The weight I lost during the three weeks of barely eating was a bonus and even though I have gained a little bit of it back I am pleased that most of it has stayed off.

However, I still think I am living with too much pain and wish I could get more relief, but it looks like this is my life. I try not to dwell on the pain and not to talk about it. Why give it even more power over me?

I have written this in the hope it might give other people who are considering a ketamine infusion some information on one person’s journey. I now understand a little more in relation to all the medical comments of “it’s different for everyone”. Out of the four of us that started I was the only one who managed to see it through to the end, so my experience is different to others. According to Malik the fact that I was mind-altered for such a long time was unusual. However, it's possible that there are other people who have had similar experiences to me (I would love to hear from them).

I now understand why other blogs lasted only a couple of days into the infusion and then stopped. It's too difficult to keep track of what is going on and you continually lose your train of thought. I managed to chronicle my journey only by relying on other people writing for me and taking notes. There were periods where I couldn’t write at all and I just dictated over the phone.

It has taken me longer than I expected to get the blog online and most of this stems from a reluctance to read what I wrote during the infusion. I was worried that I was too repetitive, too introspective and too self-indulgent and that I would be embarrassed by what I had written.

I now realise that the main reason for having the infusion was not to see if it could manage my pain better but to detox me from the fentanyl. My pain specialist Raph says that no pain specialist would put me on fentanyl patches nowadays as it is too hard to get patients off them.