I was taken to the operating theatre at about 8.30am. My surgery lasted about three hours and at about midday I woke up in the recovery room. The nurse asked me if I felt OK and after realising my surgery was over, I told her I was OK. I then realised I could speak. I could also wiggle my fingers and toes so I also knew I wasn’t paralysed. My very first thought was “If I can talk and I can type, I still have a job”. Within an hour I had drunk water and ate a sandwich and could do both without difficulty or being in pain. However, it became very clear very quickly that I wasn’t in full control of my own hands as well as being unable to walk at all (my right leg could do very little – wiggling my toes was about the limit of my movement). I was also catheterised for the first time in my life.
After eight hours in the recovery room (I should have only been there 1-2 hours but there were no ward beds available) I was moved into a ward just after 8pm with some very serious cases (mostly with individuals who had gone through major brain surgery). All of us on the ward had to have our ‘obs’ (observations – blood pressure, heart rate, temperature, blood sugar, etc.) taken hourly right through the night (so I got no sleep at all). I also had horrendous spasms in both my legs (over 1000 a night for the first week). I was put onto a drug called Baclofen (which I’m still on now).
The day after my operation was not the best. Because of COVID-19 no patients could have visitors. I briefly spoke to my partner on the phone. That was the day’s only highlight. I realised that I couldn’t do basic things with my hands like eat with a knife and fork or hold a pen. The latter really upset me. I keep a very detailed hand-written diary so not being able to write in it was very upsetting for me. I was also unable to give myself a wash so for the next few days I was given a daily body wash by the hospital staff. I couldn’t even hold a toothbrush properly to brush my teeth. I found the whole experience demoralising and degrading. Not being able to shower was horrible. Anyone who knows me will tell you how important showering is to me and my mental health. I shower a minimum twice a day. Not being able to shower felt like an abuse of my human rights. I never felt clean after a body wash. On the day after my operation, it became clear I wouldn’t be going home that day and it soon became apparent that I would be in hospital at least a week.
After a few days, some of my hand functionality began to return. I could just about use a knife and fork and I could pick up a flannel to wash my own face. However, holding a pen and writing with a pen was impossible. Unlike the other patients on the ward (a couple of who were sedated almost 24 hours a day), once I had awoken, I spent the whole day out of bed sat in a chair. I had my iPod so listened to a lot of music but did little else. Couldn’t hold a book or magazine long enough with my hands to read.
On Tuesday (April 20) I had my catheter removed. That seemed like a huge step forward. My partner also dropped my laptop off. I was unable to see her but at least it meant I could Skype her and my children. I also realised that typing was something I could so with my hands relatively easily. Writing a few emails was also good therapy for my fingers and I had a link to the outside world (I don’t have a smartphone, gave up using one in 2019). The hospital physiotherapists had given me hand and leg exercises to do and I spent a lot of time using the ward rotunda as a mini-gym. No-one else was capable of using it (as they were all confined to bed) so I had it 24/7. I was moved to another ward which I was told was “good news” as it meant I needed less specialist care. On Wednesday (April 21) I begged the doctor to allow me to shower. He said I could have one as long as I didn’t get my post-surgery dressing wet. Had to shower in a wheelchair (surreal to say the least) but despite this, it was heavenly to wash my hair and feel clean after six days of humiliating body washes. My dressing was drenched but I didn’t care. I felt clean and alive. I felt co-operative and communicative.
Just after the shower, I had an unexpected visitor. A doctor visited me and told me that I would be leaving Queen’s Medical Centre and would be moving to another hospital (City Hospital) to a specialist rehabilitation unit (Linden Lodge). She said she would try to get me a bed there for that weekend and that I would probably be there for 4-6 weeks. My emotions were mixed. I was glad to be moving to a place with dedicated and specialist care, but was surprised to hear that I would be in hospital for another 4-6 weeks.
At lunchtime that day, I got the unexpected news that there was a bed at Linden Lodge that evening and I was told to pack up all my stuff (not that I had much to pack). At 7pm I was transported by ambulance (first time I had ever been in one) over to my new temporary home. I was given my own room (which was great) and I unpacked the few things I had. My partner had dropped off clothes at the unit but again I was unable to see her due to the COVID-19 visiting restrictions. At one point in the evening, I decided to sit on the floor rather than the bed to get undressed for bed (I found it easier than being on the bed). When the nurse came in and found me sitting on the floor, she thought I had fallen (I hadn’t) but recorded in her notes that I had fallen.
On the Thursday morning (April 22, one week after my operation) I began life in Linden Lodge. I wasn’t allowed to shower until I had been “assessed” by an occupational therapist. I finally managed to have an unsupervised shower (in a wheelchair) early afternoon even though I was not “assessed”. I also moved room nearer the nursing staff because I was deemed as someone who needed to be watched more closely because they thought I had fallen on the floor the first night I was in here. The more I protested the less they believed me. It was even written up outside my room that I was susceptible to falls (which was true prior to my operation but not something I had done in hospital).
Since then, things have gone slowly. I was told after my initial assessments that I would likely be here for three months (i.e., until August). However, I left hospital on June 22 (after 67 days in hospital). The hardest thing I had to deal with was (until about 40 days into my stay) the ‘no visitors’ policy. I did see my partner a couple of times outside the unit through the iron bars (which felt a bit like being in prison). Over the past 12 weeks, a lot of my hand functionality has returned although I still have some difficulties. There are things that I now consider easy (typing, eating with a knife and fork, sponging myself in the shower), some that I can do but have to focus (writing with a pen, putting socks on, washing my hair, brushing my teeth, doing a crossword), and some things which are very difficult but I can do (e.g., shaving, tying shoelaces).
The first Sunday I was in the unit, I found a sentence that had all letters of the alphabet (“Pack my box with five dozen liquor jugs”) and spent hours trying to write it out in upper and lower case letters with a pen. Very difficult and very time consuming (but I did it). Over the next few weeks, I started to write my diary again. I began by writing the days events in bullet points in capital letters (writing in upper case capitals was easier than writing in lower case letters). I then progressed to writing the whole day’s events but all in capital letters. On May 19, I started writing my diary “normally” again (i.e., in sentence case rather than in capital letters). I use the word “normally” advisedly. I’m still very slow writing with a pen and it’s not the most legible, but any activity I do with my hands I still call “therapy”. As I type this, I still do not have full functionality in either of my hands and I have resigned myself to the fact that I never will.
You can read Part 1 of this blog here.
Dr. Mark Griffiths, Professor of Behavioural Addiction, International Gaming Research Unit, Nottingham Trent University, Nottingham, UK