From the moment I had been told of this abnormality in my brain I had wanted, beyond all else to have it cut out, removed, despatched. I think this is a pretty standard reaction, most people I have known who’ve had cancer wherever it sprung up, seem to feel the same. It’s an invader in your body so to cut it out seems the logical thing. So I really struggled with being told it was inoperable. I’d pushed my Oncologist quite hard on this topic. I just couldn’t understand why they were so adamant that surgery was a bad idea. They explained that I would likely be left badly disabled by an operation. “But alive! I’d be disabled but alive.” I pleaded with them. Poor Dr. Jeffries had to use all her gentle patience to explain that it would likely just regrow. In my mind, space would be there for it to grow into. Not so, she had to crush that hope. There was no saying it would grow into the space, rather more likely it would continue encroaching on my healthy brain. Had I understood things better I suppose I would have realised that cancer can’t exist in a vacuum, there have to be cells for the division to get going but I’ve never been a great science pupil so I really struggled with this concept. I never really understood the ‘quality of life’ argument, I just wanted to have a chance to live. Once I had finally accepted they weren’t going to budge on the surgery I had tried to place my faith in the Radiotherapy working for me.
But now that the Radiotherapy had failed and with the influx of new information David and I decided we would try one more time to see if surgery could be an option. We made an appointment to see the Neuro-surgery team at Addenbrookes. I also had a call from one of the team at the Boston Consulting Group. His name was Andrew Elder and prior to joining BCG he had been a neuro-surgeon. He suggested I go and see a man called Henry Marsh, a surgeon in London. He told me that Henry was a fantastic surgeon and he would really explain properly, if surgery was not an option then why not. Henry’s name had come up from one of our friends as well so we decided we’d book an appointment to see him too. As luck would have it, the appointments came up within a couple of each other. David was coming with me to Addenbrookes; Henry was based in West London so I was going to stay with my friend Lucy who would take me.
On arrival at Addenbrookes I was once more irritated by them. I had specifically requested a consultation with a named Consultant that I’d been advised to talk to but he didn’t appear. Instead there was a Registrar from their team. In the event he turned out to really charming, helpful and crucially, very candid. He told us that Addenbrookes were relatively conservative in their approach. If I wanted to speak to someone with a more radical approach then Henry Marsh would be a good person to speak to. This was most interesting news and I felt really grateful that in 24 hours I would be doing exactly that.
Lucy had agreed to be the note taker for the meeting with Henry. His private clinic was held at the Atkinson Morley Hospital in Wimbledon. My first impression of was of a trim character, somewhere in his early 50’s, absolutely fizzing with energy with large eyes behind round glasses that gave a somewhat owlish look. I had either brought my scans or had them sent on as Henry lost no time in launching in. “Unlike many other surgeons”, he declared in his superbly posh tones, “I have no fear of the C word”. Lucy’s pen halted on the notebook she was using. I was baffled. The C word was certainly unexpected. Even had it been a gynaecological consultation I might have found use of the C word while not offensive, perhaps a tad inappropriate – what could he mean? My mind leapt to cancer – but this was 2003 – surely no doctor would baulk at using the word cancer? Henry was positively beaming, delighted by our bafflement. I have no doubt he knew exactly the effect he was having on us. “Cure!” he declaimed with delight. Had Lucy been using a pencil, it would have been very much a nib breaking moment. He certainly had our attention. He went on to explain: the thinking is that if you remove the tumour and any cancerous cells you have removed the problem. However, in cases like mine, the risk is damaging healthy brain during tumour removal. Henry’s way around this problem was to perform the surgery “awake”, using local anaesthetic so the patient could make movements during the operation so the surgeons could see what was healthy brain and what was not. The brain itself feels no pain so the surgeons use General Anaesthetic to open the skull then wake the patient while they operate on the brain.
I was lost for words. I had arrived expecting nothing, only perhaps a more in-depth explanation as to why surgery was not an option for me. Henry continued blithely on, explaining that his morbidity rate was around 80% for this type of surgery. He chatted about Judith, the excellent anaesthetist he worked with for the procedure and how it took place in St. George’s Hospital in Tooting. Lucy was scribbling frantically; my head was reeling. He asked if I had any questions and like a keen student who wanted to prove their worth with a good question, I tried my hardest. “You said 80% morbidity – so only 20% of people die?” I mean that sounded amazing odds to me, I would certainly risk that. Henry looked horrified – possibly by my ignorance, perhaps my lack of Latin. “No, no! Morbidity is the risk of disability following the procedure, but it mustn’t be underestimated.”
In just a few short minutes the huge cloud that had pervaded my every waking minute was starting to lift. Henry mentioned a documentary had just been made, “Your Life in their Hands”, it would be showing on tv so I could actually get to see the procedure being performed. Henry assured me there was no rush, I should go home and discuss it with David and he would discuss it with us both if I wanted to proceed. If I wanted to proceed?! I wanted to do it there and then!
Bombinmybrain 