This is a series of blogs starting from the day I was diagnosed with an acoustic neuroma. If you want to start at the beginning then please follow this link:
Weeks 6 to 12
Determination has now taken over from Frustration. I need to set myself daily tasks that MUST be completed by the end of the day.
Scented flowers, some of which I have never seen before, seem to be a feature of my recovery and continue to arrive! I know in the future the hint of flowery perfume will transport me back to this time. When my mother passed, I inherited all her beautiful silk saris, some handpicked by my father as wedding gifts. They have their own place upstairs and whenever I open that wardrobe, I can picture my mother wearing each sari to a cherished special occasion. I can also imagine Mummy standing beside me as the waft of perfume that my mother used to wear hugs me. Somehow that wardrobe continues to provide comfort. The saris are classically beautiful and vintage, some embroidered with gold and silk threads, they will be worn again and again and then handed down but only I know their true worth.
I have dried all my flowers and have started making items for a charitable sale in the future. It is a healing activity. I have to concentrate and plan each frame. It is detailed work and makes my headache return each day but I feel a real sense of achievement every time I finish one. My sister posts a finished frame onto her social media site and I get a sale!! How exciting. Now I am spurred on! My collection is growing and I will arrange a celebratory gathering in the future with an aim to raise money by selling all my wares.
Life is normally so busy and it is rare to get a chance to slow down. This illness has forced me do so. My two children bought me a beautiful painting set at Christmas pointing out that I used to love to paint and suggesting that this forced time off work would be a good time to restart. I have had the wooden chest containing the oils and watercolours out for several weeks but have not had any energy to get going. I now start slowly and rediscover the joy in painting. Why is it that we get so consumed with work and children that everything else is put aside. Or maybe it is just me.
I have my first check up at the John Radcliffe. I get up early, get dressed and actually put some make up on. I look okay and decide that I need some wedge heels to complete the look. This will be the first time since my operation but I am determined to manage my heels today. I wear flats in the car but change to heels walking to my outpatient appointment. There is a notion that suggests that what patients wear changes the patient’s perception of illness as well as the clinicians’ thoughts on discharge. Pyjama paralysis is the term used to describe the inertia that creeps in when you are in pyjamas even when you are in your own home. And this gets much worse in hospital. One of my previous Consultants used to say that if a patient (female) had lipstick on then they needed to go home. As trainees, spurred on by this, we would encourage our patients to put lipstick on to persuade this Consultant to send a patient home when the patient was desperate to do so!
My sister reminds me to write down any questions I may wish to ask as I will get distracted when I get to see my Surgeon. I know the two most important ones. I really, really want to start back at work and would love to drive again.
Thinking of my current inability to drive takes me back to the time when I really disappointed my Daddy. At the age of 88, he was still driving but was becoming unsafe (in my opinion). I felt that he really should stop driving but knew that this would take away his independence. We did discuss this as a family, all of whom agreed, but I was the one who had the conversation with him. He was so irritated by me and it was only when we promised that we would take him for an independent driving test, that he agreed to consider this any further. The driving test was as expected and the team felt that Daddy could drive but only in the daytime and only to and from a limited number of destinations (all very close). They messaged this so well that Daddy felt empowered to make a decision that if he was not a 100% safe that it was probably better not to drive. I learnt many lessons about communication that day!
My sister drove me to the John Radcliffe and the trees en route have never looked so good. The cherry blossoms are in bloom and seem to have peppered all the hedgerows as we travel to Oxford. I have many pictures planned in my mind when I next find an opportunity to paint. Talking to my sister, I realise that I am struggling with the right-sided deafness which is worse than I ever expected. In quiet conditions or in a one to one conversation, I am fine. In the car, with music on, I struggle with hearing my sister clearly and I am sure that this in itself makes me feel tired. My facial movements are completely normal but I have a very dry right eye but because I keep rubbing it, I have developed great bags underneath this eye that no amount of eye cream will improve. My balance is manageable and I know that this will get better. The tiredness and inability to hold multiple thoughts is frustrating but now expected and I will just have to manage. I have started texting myself everytime I remember something I need to do otherwise I forget.
I have joined many Acoustic Neuroma groups and feel guilty reading posts from others. I have been so lucky post operatively whilst many fellow patients have not. Surgeons are skilled clinicians but my father was always the one to point out that ‘no matter what a surgeon does, Mother Nature is responsible for healing’. I managed to escape in the healing process without any major complications so certainly all the good wishes and prayers sent to me, worked.
I follow the progress of ordinary people like me who have undergone surgery previously or in parallel to me. Some have made the same progress as I and I laugh when I see that our milestones and frustrations have paralleled. Others have had a much slower and debilitating progress. I cannot tell you how lucky I feel but I have to put myself in the shoes of others whose whole lives have been turned upside down. Some have had significant facial disfigurement and are wondering out loud on social media how much recovery they will have. Others are still nauseated and very unbalanced. Others are six months out of work and are still struggling even with a phased return to work.
Every Surgeon that I know goes to work aiming to improve the lives of their patients rather than cause life changing events through surgery but complications happen in all of our hands even when surgery is really straightforward. This is why we ensure our patients are consented fully and are aware of what might happen. I do this every day I practice but the absolute gamble as to whether YOU are the one who will encounter these problems cannot be foretold and I had completely underestimated the anxiety that this causes.
I attend my outpatients with my Surgeon. I think he is pleasantly surprised when I walk in. I still look a wreck despite my make up as my hair has become white. On men this looks distinguished, on a woman, well I just look old. He is pleased with the scar although this is still healing. I explain that I wish to dye my hair and although he agrees, his Nurse Specialist suggests that I wait another two weeks until the scar is fully healed. He knows that I am keen to go back to work and suggests a phased return at three months. He warns me that I will continue to be tired and I explain that I really believe him now.
The Surgeon and I had discussed the compromise of leaving some neuroma behind in order to maximise the preservation of the facial nerve. I have already had my follow-up MRI last week and we go through the scan results together. There is a 5mm residual part of the neuroma wrapped around the facial nerve which is very easy to see. It will need monitoring and if it grows, it may need cyberknife therapy in the future. My Surgeon explains that I will need another scan in October. That is a long time away and I forget about it. He is happy that I can start driving when I feel ready and when looking over my right shoulder stops hurting my neck. I feel like I am almost back on track.
I am so elated that I go shopping into Epsom the following day with my neighbour. I wear flats and enjoy looking around. But this is too much, too quickly. My body tells me to slow down and I fall asleep exhausted in the early evening.
I seem to be making steady progress and I reevaluate my previous commitments. I had enrolled in the Kings Fund Senior Clinical Leaders course and originally decided that I would not attend module 2 as I would not be up to it. I had not made any promises to myself after desperately wanting to attend the Association of Surgeons in Training conference at week 6 and really just being so naive at thinking I would be able to make it! I feel that I could attend the Kings Fund if I get a taxi and sleep there and back. I get my hair dyed as soon as I can so that there is some semblance of normality and I feel back in control. The course is excellent but I cannot physically attend on day 3 as I am so exhausted and end up in bed all weekend.
I still cannot engage with emails as I struggle to concentrate for long enough and I have not dared open my work emails. Twitter has been great way of communication, and a saving grace, as it makes you feel that you are part of the real world. You can Tweet from your bed and it takes very little concentration as you can dive in and out very easily from any conversation.
I am beginning to feel normal though and the weekend of Week 12 has been a great goal to look forward to. My sister and I have booked birthday presents for each other and this has ended in a personal shopping expedition, a styling session, a photo shoot and an overnight stay in the Tower Guoman in Central London. We travel into town and book in. We have a fantastic room overlooking Tower Bridge and there are crowds of people in town. We travel into Oxford Street and start the session with the personal shoppers. One takes her time and understands her client and guides her to exactly the right styles for her body shape. The other, does not get to know her client well and pulls clothes that are completely inappropriate and makes the client feel quite deflated. This reminds me of our current trainees, if you take time to get to know them and what they need, they tend to do well and flourish in a firm. If there is no educational engagement then the trainee gets along but does not feel invested in and just about survives in the current environment.
We go out for a Chinese in the evening and I look around at people walking past. We have no idea how people are managing in their lives, whether they are sad or happy, well or not, financially secure or just coping. We all wear our own facades and get on with our busy lives. Perhaps we should all take a moment or two to really look around and smile or do a good deed but not let anyone know.
The following afternoon we enjoy our photo shoot. I look at the photos which show the aftermath of illness which cannot be hidden by make up. I think back again to my companions on the acoustic neuroma journey. Everyone has their own story and determination to back to as near normal as possible. The sharing of stories has always been a way of helping each other. Knowing what has been achieved by others gives us the hope that we can achieve this too. I look forward to the improvements and updates shared on social media and thank everyone for their honesty.