The cyst, the tiny, evil monster that had caused all this horror, had been discovered. Dr Dalmau’s leading paper on the treatment of NMDAR suggested that the removal of the cyst should be the first step once it had been found. Methylprednisolone (steroids), IVig (immunoglobulin) and plasma exchange should follow. From all the research and case studies that Nova read once we knew what we were facing, it seemed that this was indeed the best way forward.
The doctors, however, wanted to start with the IVig but they didn’t have a licence to use it to treat this illness as I was the first case in Ninewells. They thought it would take around two weeks to get this in place. Nova was concerned that by the time two weeks passed and I got the IVig, I would be too weak physically to undergo surgery. I still wasn’t eating or drinking, on maximum doses of heavy duty medication and seriously weak. Eventually the doctors agreed that it made sense to get the surgery done while we waited for the licence. The two gynaecologists who then got involved were an amazing support for Nova. They acted really quickly and researched the complications associated with surgery and the illness I had. There was a team, including two anaesthetists, standing by ready to perform the operation. They took the decision out of Nova’s hands about the surgery as it was a possibility that my ovary or more would have to be removed. Knowing my longing to be a mum, this was a huge relief for her.
I was totally unaware of all this medical progress with my case. I continued living in my dark, mangled, blurred and nightmarish world but from a few days before my surgery I entered a black hole. This is the only point in my illness where I remember nothing apart from one tiny moment. There is about a week and a half of nothingness. I have no recollection of going in to surgery or coming out. Apparently it took a lot longer than anticipated but was successful and I returned to my little room to recover. The only memory is of waking up briefly in a rush of light and asking for more morphine. I must have been taking this orally as I remember drinking it and sinking back into blissful oblivion.
The next memory I have is of being at home. My surgery took place on the 1st June and I was given a pass to go home for a couple of nights on the 10th. The memory is of being in the bath and suddenly seeing the dressings on my abdomen. I had no idea why they were there and was very confused. I’m sure Nova tried to explain but I don’t think I took it in at all.
Following the surgery I was given 5 days of IVig. Intravenous immunoglobulin (IVIG) is a blood product administered intravenously. It contains the pooled, polyvalent, IgG antibodies extracted from the plasma of over one thousand blood donors. I was starting to grasp tiny pieces of information about what was happening to me and in this case I remember my mum telling me that this was going to help make me better and that she would be with me until the treatment was finished. She stayed true to her word and together we watched those bags slowly drip their promised magic into my body.
Prior to my surgery I had been in a deeply dangerous, fierce, paranoid and desperate state. I now moved into a new phase and a new state of being. This was the dream world. The raging fragment me was exhausted, totally spent. It was still there but the fight was gone. I suppose, looking back, that it was a combination of the extreme trauma my body and mind had been through over the last few months coupled with the removal of the source and the high dose sedatives and anti psychotics I was still being fed. Rage and terror were replaced with nothingness. A dead, flat, and complete nothingness. My mind was calmer and working for small moments and fragment me flickered to life from time to time but I felt nothing. No emotion, no connection and no sense of being part of this world. It was like floating in a dream world.
I still wasn’t eating or drinking much and had no motivation or ability to do anything at all. I didn’t really walk, I shuffled. The hallucinations had stopped and the drop attacks but the electrical current remained. It wasn’t quite as acute as before but I still don’t think there were more than a few occasions when my body would actually relax from it’s tense, rigid and clenched state. I could feel no emotion and feel no peace. A strange combination. I had also begun to notice the effects of the medication and they tormented fragment-me. I suddenly became aware of a vile outbreak of acne all across my face and chest. This was caused by the steroids. I also realised that if I lay on my side I would drool out of the side of my mouth and there was nothing I could do to control this. So I didn’t let myself fall asleep unless it was night and I was given sleeping pills.
I was so thin that none of my trousers would stay up, even the smaller clothes nova had bought me were ridiculously big. I would shuffle around holding them at the back to stop them falling down. I had horrendous acne. I drooled constantly. I rebelled against the shower on the ward. I was disconnected and numb. I barely spoke. I lay in that bed for hour upon hour staring at the walls. Fragment-me was demented with the empty hours but had nothing left to give. I watched the clock. Listened to the sounds of the ward and waited, waited for my devoted family and friends to come, even though I couldn’t talk to them, and they did come. They sat with me for hours and my next post will pay tribute to the many memories of their love and kindness. I waited for the days when I was allowed home on pass and waited for something, anything to change.