(Very) bad news… (Part 2)

Despite my emerging secret theory of hope, I was absolutely terrified on the trip to Oxford the following week. The previous two meetings with Dr. B. had genuinely traumatized me and I was dreading the possibility of a similar meeting with more yet bad news. My wife came with me and we did our best to keep the mood light on the drive to the hospital but I could tell she was feeling the same way. We arrived at the neuroscience outpatients department very early so stopped for a quick coffee before going up to the appointment. Once our appointment time arrived we didn’t had to wait long before we were called in to meet Dr. L who was accompanied by a specialist oncology nurse, Nurse. G. If, like me, you do or have ever worked in a corporate environment, you would have recognized the format of the ‘meeting’ immediately and I knew I was in trouble. In the corporate world these types of discussions are often called ‘consultations’ and the structure is always the same. Dr. L was in the role of the leading ‘manager’ who was going to carefully take me through a structured update of information I wasn’t going to want to hear and Nurse. G was in the role of a supporting ‘HR partner’ who would provide process support, a more ‘human’ face and be the person I would liaise with afterwards. Having led and attended many of these meetings in the past it was almost comic to be on the receiving end of one, particularly under these circumstances. I say ‘almost’ comic! In terms of their performance during the discussion I have to acknowledge that they did an amazing job. Dr. L was clear, conveyed confidence and expertise and had excellent ‘bedside manner’ throughout. Nurse. G was kind and considerate, making sure to confirm I had understood everything that was being said to me and that all of my questions had been answered. Dr. L started the discussion by asking me how much I felt I understood of what was happening to me. It was a great question because whilst I had emerged myself in general information in an effort to prepare for this discussion, the reality was I didn’t really know much other than the ten minutes worth of information Dr. B had shared with me. He pulled up the most recent scan and started to expand on that story. The tumour was embedded the left side of my brain (the dominant side in my case) in a pretty important and delicate location in respect to my speech center and controlling feeling on my right hand side. Whilst the scan could not absolutely confirm for them, their experience in looking at these sorts of tumours indicated to them that it was a “very aggressive” tumour and therefore this was extremely serious. My ‘theory’ evaporated in that instance and I felt like I’d been kicked in the stomach. My wife was ashen faced. He went on to stress that whilst this was not a diagnosis (leaving a minuscule window of uncertainty) they were confident enough that they would need to act with immediate radical resolve to give me any sort of fighting chance. The prognosis without treatment would be a maximum of 8 months survival. The ‘radical resolve’ would be an astonishing proposed treatment regime. First they would need to perform brain surgery to remove as much of the tumour as they could, but due to the delicate location and risk of serious neurological damage under normal conditions I would need to have this operation done whilst I was awake. This ‘awake crainiotomy’ would allow them to carefully operate whilst monitoring the effect of the surgery on my cognitive function and change approach or stop in the event of causing me to much damage. Once the operation was completed the tumour could be tested and if confirmed as the type they expected I would most likely undergo a radical treatment of chemo and radiotherapy. They didn’t expect that I was curable, but the suggested treatment offered the best chance for extending my life, the average survival time then being increased to 12 - 15 months with 20% of peoples making it to 2 years. When he had finished this initial update the first question that I spluttered out was “when will you the surgery?” to which he replied “we’re aiming for a couple of weeks time”. It’s almost impossible to describe exactly how I felt during the discussion. I remember that I really didn’t like the sound of the surgery, but apart from that I almost went ‘dead’ emotionally for a time. I’m done a great deal of preparation for the session and had pages of questions which I’d created and somehow I went into auto-pilot and started working through them methodically; the session lasted for an hour and a half in the end I left with as much knowledge as I think was achievable at that point. Nurse G. gave us a folder of ‘Macmillan’ leaflets and other useful information and we left. Go here to the start of the journey. Go here for next blog entry. Go here for previous blog entry.