I had survived surgery and had the IVig treatment and initially, in the first week or so after the surgery, there was a big improvement. I stopped being violent, aggressive and paranoid and became much calmer. As I explained in the previous post however, this progress did not continue. I was calmer but disconnected and still lost in an inner world like no other.
My mind, the little bit operated by the fragment, was able to process some occasional thoughts and, as I will describe, grumbled and fizzed silently at some of what was to follow in the next few weeks. I would be raging inside but, exhausted and numbed by drugs, I complied to a certain extent.
The electrical current still pulsed through me but there were some moments when I felt peace. To have been in such torment meant these precious moments were like heaven to me. The first thing that brought me peace was my mum and her reiki. Mum worked in the hospital so she would come and see me every morning and often in the evenings. She would sit and hold my hand as I lay, rigid and silent, on the bed. As she held my hand she would give me reiki and after a time I would begin to feel a calm and peace flow through me. I would beg her to stay till the lights went out and I was given my sleeping tablets, the scared and lost part of me needed that so badly. And she would stay. For hours, just holding my hand and bringing me peace.
The other time I remember this feeling is when Nova would come to see me and, exhausted by the nightmare she was going through, would climb onto the bed with me and we would fall asleep in each others arms. I rarely slept without the help of medication so to drift off like this, wrapped up and safe, was just pure bliss.
What I have been remembering lately is how the relationships I had with my family and friends at that time took on a whole new form. Any emotional baggage, grown over the years, was gone. It was stripped away. In my time of desperation and utter dependence these relationships took on a form of pure love. Nova, my mum, my dad and step mum, my brother and his girlfriend, Nova’s mum and my sister in law, Jamie, our friends who stood by us all the way, I didn’t care one tiny bit about any difficulties we may have had over the years, any perceived failings or past hurts. Nothing mattered except the fact that they loved me and I loved them and they were there when I needed them most.
My dad tried to visit as often as possible but he was suffering a nightmare of his own. My step mum, Gill, who I loved with all my heart, was losing her fight against Myeloma. I was unaware and it devastates me that the last time she came to visit me is a memory I have lost. In all the things I remember, I don’t remember the last time she spoke to me, put her gentle hand on my arm or kissed me goodbye. It is the part of my story that breaks my heart more than any other.
When my dad did come I was glad. He would sit, in his lovely dad-ish way and tell me that he was going to get me better. We would get me better, he promised. I believed him.
My brother was already someone who’s strength and belief I held on to for dear life. He never gave up on me and his presence was a gentle, solid comfort. When his lovely girlfriend, Domi, came to visit me, she seemed like a shining angel to me. So lovely and so gentle. I remember telling her that I was trapped in the hospital forever and she softly reasoned with me that that wouldn’t happen. I could barely communicate with any of them but their presence meant the world.
Nova’s mum came and she brought fudge doughnuts. I still wasn’t eating and there was a constant stream of delicious treats in my room to try and tempt me. She sat with me through one of the plasmapheresis treatments which were soon to come my way, hours and hours that treatment took and she sat by my side. The support she was providing behind the scenes was, I know, invaluable to Nova and although I wasn’t aware, to me. She put up with a lot from me and saw some of the worst of my behaviour but she too, never gave up on me.
My sister in law came. She had featured often in the early days, looking after me and once I was in hospital, helping to keep me there. During an escaping-spree she was with me and blocked my way out. I went to punch her and she just looked at me and threatened to sit on me. I thought better of it and went back to bed. She brought me chocolate chip and pumpkin cookies. My favourite thing that she used to make.
Lucie visited and she brought Mars Planets and Haribo tangfastic. I barely spoke and sometimes turned away from the people who came to see me but it was because of the electrical current. It sometimes got worse when I had visitors, I don’t know why. I wanted to see them and I wanted them there but sometimes my body reacted this way and I would be locked in the fight against the vibration and tension, unable to say what was going on. Later on, Lucie was one of the first people who managed to get me to engage in an activity. She got me to play snakes and ladders and after months of the blank nothingness this was a bit of a miracle.
A childhood friend came to see me regularly and she would do my nails. She would give me a manicure and once she brought me earl grey tea and china cups. I liked to listen to her telling me about her family and what they were up to even if I couldn’t do the same.
Friends and family that couldn’t be there sent cards and little gifts. I know that there were people who wanted to come but Nova kept it to a minimum, knowing I wouldn’t have coped or wanted them to see me this way. The cards meant a lot and I did register them, deep down with fragment-me. One friend sent me a balloon because I wasn’t allowed flowers on the ward. This friend is a very successful business woman and when I was alone fragment-me would look at that balloon, with it’s little card attached and was convinced that it contained a message about how to escape. The reasoning was that this friend was so clever she was bound to know how to get me out.
I played a game with myself that was to do with the cigarette burn I had inflicted on my hand all those weeks ago. I had a nasty scar and I told myself that when that faded I would be well again. I looked every day, hoping to see it disappearing.
In amongst all these people and actions which kept me going, were also many, many things which brought me distress and discomfort.
The noises of the ward drove me mad. There were always trolleys being wheeled past and I was confused about the sound. It was loud and rattled and I couldn’t work it out. The man in the room next to me moaned and screamed a LOT. It was a horrible sound and resonated with my soul. He died at some point during my stay. I hope he found some peace. Sleep was a precious thing to me, it brought the only total respite from the constant electrical current and the weird world around me. I raged silently every morning when I was woken up by a nurse bringing fresh water into my room. It wasn’t their fault, they were just doing their jobs, but I raged to be woken back into the nightmare each day.
Being woken up would be followed by the utter delight of the breakfast regime I had been put on by the dieticians. Because my weight was so low they had prescribed some vile drinks and cooked breakfasts for me. I know it sounds ungrateful but these were not the most appetising. I could barely manage to feed myself in these days, I didn’t have the strength, motivation or co-ordination to manoeuvre food from the trolley-tray by my bed into my mouth. Each morning I would manage the white roll they brought and would then fish around in the congealing breakfast for something vaguely edible. The breakfast was served in a round pot. A one-pot breakfast. The eggs and bacon and beans all swimming about in layers. I never really managed much.
I was given my vast amounts of medication at various points throughout the day and fragment-me hated this. Every day I would plot how I would refuse to take it but the numbness would flatten my plans at the last minute. It felt like I took about 20 pills each time I was handed the dreaded plastic cup which contained the medication. I HATED it.
I hated having needles constantly stuck in me too. I would get bloods taken all the time and every evening would get the detested fragmin injection. The fragmin was to stop blood clots from forming and was one of the many things I had to endure as a counter to the medications I needed to take. That injection really bloody hurt. I was always given the choice of arm or stomach and I always chose arm. Into my shoulder it would jab and fragment-me would spit inside at the pain.
There was more to come that would spark the fragment-rage as my treatment moved forward. The next stage was to be the plasmapheresis and a whole stream of psychiatrists, neuro-psychologists and occupational therapists. The fight would soon start to come back to me, not in the violent way it was before surgery, but in a stubborn, determined and deeply frustrating way for my family.