Dear Readers

All the best for 2022! May this year be kind to us. Thank you so much for reading my blog. Although this is a serious matter I really hope you will see the humour in it as well.

This is part 1 of this blog as it covers two subjects:

• Delirium
• Can we as chronically ill patients have a vision for the future?

I have been meaning to share my experience of a serious complication after my operation during May 2021 for some time now.

As you know I was diagnosed with advanced cancer on 5 January 2020, 2 years ago! If I knew on that day what was waiting for me, I probably would have run far away. However, as life often teaches us there can be good and bad in the same situation.

I have met the most kind and caring people who literally saved my life with emotional and financial support.

My fairy godmother deserves special mention as she has made most of my treatments possible. I have never met her, I don’t even know how she looks, but I know her beautiful and generous heart and I am forever grateful to her. I am also eternally grateful to Bettie Hough for her continuous support in all aspects.

Despite hearing I had a poor prognosis I am still here and it seems to me my prognosis is currently the best it’s been the past two years! I am hoping for it. The permanent draining tube in my abdomen for the ascites makes a huge difference.

DELIRIUM

One of the “highlights” of 2021 must be me suffering from delirium after my major operation in May. I have experienced how the brain can override pain. There was a misunderstanding with my pain medication directly after my operation resulting in a period of 5 days where I was withdrawn and didn’t respond to anything at all. I am known for talking a lot, however, during these 5 days I didn’t say a word. Delirium is a serious disturbance in mental abilities that results in confused thinking and reduced awareness of the environment.

What the medical personnel and my loved ones didn’t know was that I was having the most vivid and horrific hallucinations while I was lying in the hospital bed without saying a word. The only indicator was high blood pressure (I always have low blood pressure) and my pulse was over 110.

I remember every little detail of all my hallucinations. After I was released from hospital where my operation took place I was admitted to a psychiatric hospital. As I refused to drink or eat anything my family knew they wouldn’t be able to care for me, hence out of sheer desperation they had me admitted to this clinic. I have no recollection of any of this.

The theme of my hallucinations in a nutshell:

• I invented ME
• I invented Covid
• I was a drug dealer
• I was in charge of illegal mining in South Africa
• I was the worst mother and wife
• I was a fraud as I pretended I was sick to receive funds for an illness I didn’t have. Everyone I knew was against me; my husband, my oldest daughter, my children by marriage, my brother, my ME and cancer friends and others. The only person who wasn’t against me was my youngest daughter, in my hallucinations she was also a drug dealer where she was supposed to be studying at University!
• I was going to be arrested, the police was watching me and setting traps for me in the hospital. My phone was cloned, they could read my mind, they typed everything I thought on a laptop and read it out loud, many other rather disturbing events were happening in my mind. The fortunate part was that I was as quiet as a mouse, no talking or screaming. The reason I refused to eat and drink was that in my hallucinations they were trying to get my DNA and my dental implants to match it to crimes committed decades ago.

I have no recollection of being admitted to the psychiatric hospital a few days after my operation. I started coming around on day 3 of being in the clinic. I woke up wearing a nappy!

Picture the scene – my last memory was shortly after my operation and since then I have been living in fear of being prosecuted, not knowing what my punishment would be. Options on the table were prison, a death sentence and exposure on national TV. So when I started coming out of the delirium I had no idea what was real.

• Have I died?
• Have I been send to prison?
• Have I been sentenced to live in a new reality – almost like a simulation game where everything is controlled and you can never escape. Every day starts with a new script…
• Having a very analytical way of thinking helped me trying to make sense of my surroundings but it also drove me almost insane.

Coming out of the horrendous hallucinations wasn’t the end of my nightmare. As I had no idea where I was the fact that I woke up in a room with a very thin woman with a glass eye (true story!!) and a deep smoker’s voice didn’t help at all. There was also a young girl who kept on saying “I anxious” – just that. I had no idea whether this was real or a simulation.

Nurses came into the room and I asked them where I was – they replied with the name of the clinic and I asked them why? The answer was “you had a reaction to the anesthesia and was there so it could wear off.” I didn’t believe them, I couldn’t accept it was the truth.

I took souvenirs from the dining room and put it next to my bed, after a while I would go and check if it was still there.

A few things are worth mentioning:

• I had no pain from my major operation.
• I couldn’t relax as I had no idea where I was, I walked the grounds of the clinic (it had very high walls and a security gate) as if I didn’t have ME or a big wound from my operation.
• A dear friend gave me a little note book before my operation, I started writing down all my hallucinations and also what I observed.
• The one constant was the clock in our room which kept ticking as it kept time, I started keeping a detailed diary. Questions like “where am I, am I alive, where is my family”, etc. were constantly in my mind.
• I was so scared that I also lied about having cancer and that the operation never happened (despite seeing the wound on my abdomen) that I didn’t tell anybody I had cancer or recently had an operation.
• Due to Covid no visitors were allowed and I didn’t have my phone with me.
• I was too afraid to sleep as I didn’t know what the next part of this “simulation/reality show” would be.
• I even attended an art class during one of my rounds walking up and down through the whole hospital and I made a bracelet!

Fortunately, I remembered my family’s phone numbers and asked the nurses whether I could phone them. I was convinced they played tapes when I phoned so I asked my husband and 2 daughters questions which would be off script (well in my mind at least), I asked them their dates of birth, where they were born and a few other questions every time I phoned them.

I was still not convinced that I really spoke to them.

I walked through the parking area where the staff parked and recognised myself in the windows of the vehicles. My thoughts were it was me, I must be alive, I saw all the signs with the clinic’s name on it but I still couldn’t accept it was real. There were no mirrors in the clinic as some patients might harm themselves.

I then started borrowing other patients’ cellphones and kept on phoning my family!

I also asked patients to give me things like serviettes or pass me the sugar. I thought if I could touch these things they had to be real.

I talked to a lot of patients and heard such heart breaking stories, from attempted suicide to the death of a child, being bi-polar, having major depression, etc. I am grateful that my caring side was still intact despite not knowing whether it was real or not.

I told my family that everybody had cell phones so they arranged to bring mine. Visits weren’t allowed, however, I was quite creative in making a plan to see them 🙂

I recognised my car and spoke with my daughter and husband but the moment they left I was again uncertain whether it truly happened. I had my phone with me and kept on telling myself it had to be true, they must have been there.

Having my phone with me and phoning my family and leaving messages for friends and my brother made me want to believe it was true. I wanted to believe that I was alive, I was Retha Viviers, I was in a clinic, I had an operation and cancer and I wasn’t a criminal.

I spoke almost the whole Sunday on the phone with my husband, we did video calls and he had to show me our home and cats and his wedding ring over and over and over. He thought I was completely out of my delirium as I was so talkative.

The next day the psychiatrist discharged me as my husband asked her to and she was also happy with my progress. Before my appointment I went to the parking area looking for her car, I took down her registration number as I tried to find out whether she really existed, her name was on the board with my name next to her for an appointment.

Truthfully; I was still not sure what was real or not but I said to myself that whatever the psychiatrist wanted to hear I would tell her and fortunately I was then discharged.

When my oldest daughter came to fetch me I was not sure if it was really happening. In the car I kept on asking her whether it was real. I then decided real or not it was at least a far better simulation/reality script than the one in the clinic.

My husband fetched me from my daughter’s place and I kept on asking him if it was real. He has bought me a fudge sweetie and while I ate it I again thought “well real or not, this was much better”.

I saw my cats when we arrived at home and asked for a glass of water, again I thought if I could touch something it had to be real. That night at ten o’clock my phone rang and someone asked to speak to Retha Viviers from The ME CFS Foundation South Africa, a penny dropped and I realised this was real! I was alive, I was Retha Viviers, I was home!

However, before I fell asleep I thought to myself what if I wake up in another reality the next day? 🙂

Here is where the complexity and mystery of the brain come in:

• I had no pain since the first night after my operation, I walked normally and had energy.
• When I woke up at home the next morning after realising it was real, the pain from the operation was back with a vengeance and I walked like somebody who had a major operation just over a week ago.

I felt incredibly vulnerable after this ordeal. Although my hallucinations were just that, they were intertwined with my life, the truth was just completely distorted.

Fortunately a few days after I was discharged I started talking about it and even started laughing about it.

I was surprised to learn how often patients suffer from delirium after an operation. Most of them, however, are vocal and voice what they are experiencing. I didn’t say a word. I am quite sure the hospital personnel forgot to write down that I was given a Duragesic patch (Fentanyl) the night after my operations and that is why I kept getting pain medication through my drip the morning after my operation.

This overdose of medication together with the after effects of the anesthesia set the scene for a serious case of delirium.

It will forever remain a mystery whether having ME played a role in all of this, we are known to have strange and even life threatening reactions to medicine…….