On the third day after surgery (Thursday) I was told I would have a bath, up until then I had only received bed baths which were painful as I was rolled from side to side and sat forward slightly, but I was also worried about the pain of being moved with a hoist to the bath. It was an unpleasant experience in the hoist and, as I suspected, painful too. I didn’t feel safe even though the sling that was used was a full-bodied one which is like a cocoon, I felt vulnerable; I think it comes down to feeling a loss of control over all your movements and needs. For the first time since surgery my hair was washed, it was a strange sensation as the nurse touched my head, it felt numb and yet painful at the same time, and even down to this day it still has a degree of numbness when it’s touched, but thankfully less painful. After the bath, the only way to dry me was on my bed and so I still needed to be rolled to be dried and to change the bed sheet, I was exhausted after it all.

On a side note, I’m a carer in a nursing home and as I reflect back on my experience of being hoisted and receiving full assistance with my mobility and personal care it gives me incredible insight in to what some of my resident’s experience on a daily experience.

During the first day’s post-op I would often hallucinate! When Lindsay came to visit me on the Thursday I told her she had just missed Alan, Ian and Kelly (good friends from Hull, England).  I was convinced they had been to visit me that morning, however, when Lindsay asked for a bit more detail and I said they had arrived with her dad…she knew I was talking gibberish!  Other examples of my hallucinations were I kept seeing the ward equipment – like monitors and over bed lamps – as dark, menacing monsters or spies!  Also, there was a doctor who had shoulder length hair, and I was convinced that every time he entered the HDU he would introduce himself by saying: “Hi, my name is David, but I use to be known as Sarah”, bizarre and untrue (I asked a nurse a week later if I had imagined it or if was true!).  My hallucinations also manifested themselves as auditory hallucinations.  I often heard music being played through the walls, one night I couldn’t sleep for the ‘music’ and I asked the nurse if it could be turned down…only to be told there was no music playing!

It had been arranged that on Thursday afternoon Lesley and Allan (Lindsays’ parents) would travel up on the bus to visit me and then they would return home with Lindsay as it was her final day staying in Edinburgh.  I felt sad that she wouldn’t be close by, but I was over the worst and our dog – Dexter – would be missing his mummy!  And she continued to drive up to visit me on a daily basis for the next two weeks!

On the Friday I had a surprise visitor – this one was not a figment of my imagination! – my colleague and good friend Dot travelled up with Lindsay, it was a lovely surprise! Dot has since told me that when she saw me she got such a shock at how ill I looked and how wee and helpless I appeared.  She also said she witnessed something beautiful, she told me that Lindsay was staring intently and smiled adoringly at me when she told me I was looking so much brighter.  And Dot said I was looking at Lindsay and it looked to her as though I was searching Lindsays’ face and hanging on to her every word as if wanting to believe her loving reassurances.  Dot said it almost brought her to tears but she didn’t want me to see her cry.  Her support to Lindsay that day was worth more than anything money can buy and very much appreciated. Oh and apparently they went sightseeing too (in other words they got lost!!).

Later on that day I was visited by two physiotherapists who were there to help me to stand up.  Up until that point I hadn’t given standing or walking much thought, I assumed I was being hoisted because I was too weak/tired and groggy to walk, it never occurred to me that there would be a problem.  However, as I went to stand up my legs buckled, it was only because the physios were holding me on either side that I remained standing.  I got a fright and I couldn’t understand why my legs wouldn’t support me.  The physiotherapist told me not to worry, they would let me rest over the weekend and they would return Monday to try again.

On the Saturday the nurse had suggested she hoist me on to a chair so that I could surprise Lindsay!  I was shocked at how such a simple task made me feel exhausted and even though I tried so hard to stay in that chair until Lindsay got there, I eventually had to admit defeat and asked to go back to bed before she arrived.  But I managed it the following day and Lindsay and her mum were so pleased to see me sat in the chair as it represented progress on my part!

There were several times in my first week I would be told off by the nurse as I would try to tolerate the pain, one, because I’m stubborn and, two, because I didn’t want to bother her (because I had a feeding tube it wasn’t a simple ‘here’s a pill to swallow’ it was a bit more intricate at getting the medication through the tube, that’s why I thought I was being a bother!) but that would result in me leaving it too late and, just like on my first night, the pain seemed to go from being bearable to excruciating and would have me in tears.  Believe it or not, it took me over a week to finally give up my stubbornness and my concern at bothering the nurses and ask for pain relief.  Even now I still get it wrong and think I can manage the pain without taking medication!

I was asked by the consultant neurosurgeon if I felt up to being asked questions about my symptoms by two medical students, he said that although some of my symptoms were common to other illnesses my diagnosis was rare.  I was more than happy to as it may help future doctors be able to identify a rare and life threatening case. During the rest of my stay I was asked several more times to be a ‘guinea pig’ for the students, it was fascinating listening to them fit the different symptoms together to try arrive at a diagnosis.  Although no one arrived at the correct diagnosis of an arachnoid cyst on the brainstem, they were able to rule out what it couldn’t be, and one girl was able to say my brainstem had been compromised but she didn’t know what the cause was.  It showed me how complex the brain is and what a vast amount of knowledge is needed by the medical students.

By the Sunday it was decided by the consultant neurosurgeon that I was now able to be transferred to a ‘normal’ room on the ward and out of HDU! I was happy because again it showed progress, but I was also a bit sad as I had grown close to the nurse in HDU and felt safe under her care.


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