The first thing to say about today is that it has ended well. My biggest concern was damage to my facial nerve. Of course, I listened carefully to the 20% risk of nerve injury but also to the 80% chance that there would be no long-term damage. I had read of all the possible management options depending on the degree of injury and had discussed the options to mitigate this complication with the Surgeon. I had made my choice and now I was in the hands of others.
Today started with an inability to sleep and getting up at 5.30am. I waited in bed after brushing my teeth, washing my face and taking my tablets. Wanting to have a shower, I went in search of the nurses as I needed my operating gown. The nurses were at the handover desk at the end of the ward and I had worn my brand-new slippers (and my new pyjamas and dressing gown!). The majority of patients were asleep, the ward was dark and quiet but the nurses were still busy with the patients that were unwell. Trying to stay as quiet as possible, I tiptoed through the ward, as I had learnt from my many nights on call but despite this my bed slippers were squeaky and whatever I did they did not get any quieter!
The nurses gave me my gown and two fresh NHS towels, reminded me of the need to wash in the triclorosan and to take my tablets with a little water. I showered, enjoying the hot water and the feeling that I was independent, a feeling I knew I would lose in the short-term.
I thought how different today would be compared to the lovely family meal we had yesterday at an Oxford pub. There were so many pubs to choose from to enjoy a Sunday roast but the one that had caught my eye was the Eagle and Child. Apparently, this is where J R Tolkien and C S Lewis frequented and where my favourite books were born, The Lion, the Witch and the Wardrobe and the Hobbit. It was good to spend family time, although rushed, as I needed to be admitted at 4pm to the West Wing at the John Radcliffe.
I got out of the shower and dried myself on the towels. To the NHS, please make your towels bigger as many of us are not a size 8!!!! I put on my gown and remembered to do it up correctly so that I maintained as much dignity as I could for as long as I could!
Having tidied the room, putting all my belongings away tidily and not being able to think of anything else to do, I got back into bed.
My husband and kids arrived, followed closely by the duty registrar who consented me. The second anaesthetist also arrived and made sure that all was well. My Surgeon also came and reassured me that all was on track and that I should be on my way down to theatre by 8.30am. He asked if I had any further questions and I replied that I did not but I needed to get on with it! My husband was worried and the Surgeon promised that he would contact him as soon as he had finished or in between if there were any concerns. And he did what I do regularly. He took the phone number down and wrote it on the notes, as there it cannot get lost and is on hand if you are scrubbed in theatre and need someone else to find the number for you!
I kept it all together until I left my husband and kids. As soon as I laid down and started being wheeled out of my hospital room, a feeling of sheer panic overwhelmed me. I have never really experienced this before. I should know better and knew the operation was a calculated risk that was in my favour, and that doing anything else was not an option. How absurd and silly, but the panic was there as I really had lost control and there was no going back.
I closed my eyes and went on the journey to theatres and into the holding bay. I confirmed my details and shuffled from my bed onto the theatre trolley. I was then taken into the anaesthetic room. Everyone was professional and calming. The anaesthetic team had a great balance of humour and professionalism that really did confer a sense of normality to this bizarre situation.
An intravenous infusion of propofol (I assume) was attached and one minute I was talking normally and the next I was asleep!
I have no idea as to what happened next. I know I needed a catheter, an arterial line, a femoral line as well as other new venous cannulae. I was placed on an operating table in a park bench position (lying on my left hand side). I had holding pins to make sure that my head did not move during surgery. I am glad that this was all done when I was asleep as there was no further anxiety or concern regarding dignity from me.
The operation apparently took 10 hours. The operation involved a craniotomy (making a hole behind the ear through the skull) and then pushing the cerebellum back to allow access to the tumour. Neurosurgery is complicated and involves changing the way the brain functions by reducing the fluid around the brain and so allowing access for the surgeons to operate as there is a very limited space within the skull. The tumour had grown into the brain, was stuck to the brainstem and was slightly different anatomically to what had been anticipated. The growth was towards the lower part of the cerebellum and brainstem so the auditory (hearing) and facial nerve were preserved as much as possible.
The Surgeon did not phone my husband during surgery as there was no need. Apparently, my husband did get a phone call from the hospital at around three hours in and this caused him to worry. It turned out that it was the ward asking him to take all my stuff home as I would be moving ward on my return after surgery.
I took a long time to wake up causing enough concern to send me straight to the CT scanner. The CT scan was normal and reassured the surgical team. Most of the tumour had been resected and there was a little air (as expected) and no blood or signs of a stroke to cause concern.
I remember being wheeled across to recovery and thinking, I am glad to be alive, and then, I can hear. My back was painful and I seemed to have severe left-sided sciatica (pain from your hip to foot). The nurses in recovery were patient with me and the anaesthetic SHO who came to see me was reassuring and understanding of my concerns.
The Surgeon came to see me and explained what he had found. He told me that my facial nerve had been preserved and I had no obvious facial dysfunction. I had been very lucky. I trusted him and did not ask for a mirror to check. He was happy with the surgery but knew I would need a night in the intensive care unit (ITU) to recover. He had already phoned my husband and the family would come and see me in ITU.
My head was painful and I was so sleepy. I had no energy and could not wriggle or move my body to get comfortable. Smells were different and my mouth tasted weird. I was also thirsty but also so sick. Once as comfortable as possible with the pain, I was moved to ITU.
I imagine that those first hours must be how it feels to be on drugs as the world just seemed to slow down and fact and fiction seemed to merge. I was introduced to my nurse in ITU and her name drifted in and out of my head so that I kept having to ask her to clarify her name. My husband, two boys, and brother and sister visited in pairs and were obviously relieved to have got this far without a major complication. At one point, someone’s phone rang and I remember telling them off for having it on in ITU and being told that maybe my hearing was better than I thought it might be.
I was now very tired, my head hurt and I asked everyone to go home and get some sleep as well. It had been a long day for everyone and we had several months of convalescence to get through and everyone needed their energy.
I tried to get comfortable and drift off to sleep but also to remember anything that might be of value for others going through this experience.
I had been awed by the complete honesty of others who had been through this process already and who had taken time to get in touch with me. These were strangers who wrote on the blog and gave me an alternative to the despair that I read on the internet. The desire to help each other is immense and I cannot tell you how moving and deeply honest these posts and direct messages were. Other messages were from previous trainees, friends and colleagues who shared experiences of their own (aged 5 as well as older) and of family members, which again, were realistic yet full of hope.
Other messages, which are the real reason that this blog will continue to record my progress and hopefully become a resource for others, are from people about to go through this journey. If there is only one sentence that you find helpful in this sea of words, then I will feel that my blogging journey was worth it. Of those of you who offered me support via direct message, I will ask you later whether you are willing for me to share your words of wisdom with others, as they truly meant a lot to me.
All I can say for now is that I am one of the 80% who has kept full facial nerve function and so my ambition from now on is live life to the full!
I have added a resource page to my blog and will continue to add resources that I have found helpful. Liz O’Riordan’s blog as well as the blog from Maureen Kenny are a great read. The late great Kate Granger’s blog is a must read. Please let me know of any others that you have found useful or interesting. Thank you.