You may well have guessed that I'm not really called Ewan, and if you pronounce my alias in your head the same way I do, you'll see it's a defiant "You and Whose Army!", aimed that the beast that is cancer. If you talk to me I'll let you into the secret of my real name. I'm a married man with 2 adult sons.
You may wish to read this from the bottom up to get the chronology
Update - May 2015
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At the time of this update I've recently (semi-)retired. A decision based on how valuable time to do the things I want stacks up against the value of a monthly salary, and finding that, whilst not without a few negative implications, seems on the face of it, sustainable. I'm currently approaching 8 years from diagnosis and treatment.
June 2014 -
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My capabilities do seem to have levelled out and I have in general accepted my "new normal". I'm happy to be still working, and I have achieved new independence by getting a new bicycle with a bit of battery boost. I never quite made up the fitness that I lost in the early years after surgery, but having the hills ironed out on my ride to work at least in part makes up for being denied a driving license.
November 2011
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I recently handled a task at work which was worthy of my job level! Whoohoo! 3 years it has taken. That doesn't mean victory, but it's a step.
I have been making heavy use of mindmaps to preserve my mental context.
This has required a lot of diligence and an acceptance of the fact that I must do tasks slower and record each detail as I go along, just in case someone interrupts me and I lose my thread completely. Although this is slow it does have the advantage that as long as I record things logically I now don't have the level of forgetfulness that a normal person has. I use "freemind" on my computer and SimpleMind+ on my ipod touch. I'm using them both for work and for life in general.
My worry is that as time goes by I'll need to delete redundant things, otherwise the sprawling mass of information will be too large to be useful.
May 2011 -
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I have recently been probing the current limits of my brain capacity again and found it wanting. A couple of tasks, one at home and one at work, have helped me characterize the impact of attention overload on complex tasks. To date when failing to complete a task I have just felt like my brain has turned to soup, the stress levels rise and the productivity falls. I now think I understand the tie up between attention overload and handling complexity. I'm hoping this insight might help me improve the set of strategies I have already put in place to counteract my disabilities.
November 2010
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- DVLA say my license is "refused/revoked" and I don't think my vision is going to get any better, so I have to get used to the idea of never driving again. The upside is that I have lost one of the 2 stones I had put on during the last two years, by cycling to work. This way there is no option to take the easy way out and jump in the car.
Oct 2010 Update:
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I have altered my job to something more in line with my reduced mental capacity. I went back for follow-up neuropsychology tests the other day. My performance was pretty much unaltered, but they were able to narrow down the issues to attention overload (can't cope with information being fired at me), and the tests showed that even brief rests can improve recall of things I was struggling with before the rest. The change of job has made me feel better in myself, and I have been able to cycle to work recently (awaiting results of vision tests to see if the DVLA will let me drive again). I am mulling over the risks involved in coming off the ani-depressants.
Feb 2010
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- fledging! .. unfortunately participating in this site is at odds with recovering my mental health, so I'm taking extended leave of absence. I need to get to the point where I can have days where I don't think about what has happened to me, and I can't do that if I'm receiving emails and checking this site. Best wishes to all the kind people I've met here.
The early history - 2004 to 2010
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I discovered a "space occupying lesion" in my brain in 2004 as an accidental consequence of an MRI scan for a different issue. They thought it was an 80% chance of it being a low grade tumour, and 20% a malformation that I had had from birth, and time would tell, since in time it might reveal itself as a low grade tumour, which have a habit of changing to higher grade and beginning to grow faster.The thing was about the size of a hen's egg and in my right parietal lobe. I was told to be particularly watchful for changes to my vision.
I was monitored yearly and MRI scans showed minimal growth (< 1mm p/y), but in January 2008 I had an episode where in the middle of a conversation with my family I felt as though I had been "reset", I suddenly became aware of where I was as if I had just been transported there. It was about as shocking as being given a firm but playful unexpected whack round the back of the head with a rolled up newspaper. I later found that these episodes are known as "Jamais Vu" (the opposite of deja vu). Nobody around the table noticed this happening to me and I was able to keep track of the conversation. Through the coming weeks I had many minor versions of this phenomenon and a couple more of the same scale as the original.
My next annual scan was coming up in a couple of months, so somewhat foolishly I didn't say anything, and waited until that consultation to tell my consultant. It was clear to me that he thought that now was the time to act, the benefit of performing a biopsy now outweighed the risks. I had the biopsy June 08 and unexpectedly the lesion proved to be a high grade malignant tumour, an oligodendroglioma grade 3.
I was allowed to have my family holiday in early August 08, and then went in for debulking of the tumour. Surgery left me with visual problems (left hemianopia - no peripheral vision on the left). After surgery the heightened startle response that I had had for many years, even prior to the first scan, seemed to be much reduced. I was off work for a few months, and could have easily won a place in the national sleeping team. I had some sessions with a psychiatrist to address the "adjustment reaction" related to the fact that before surgery I had essentially been fit and well, and after surgery I was now disabled. After a while I stopped going to these sessions, considering myself fully fit and well to get on with life.
Two years after surgery in Summer 2008 I managed to get back to full time work.
I first went back in Jan 2009 six weeks after radiotherapy , when they told me I would be ready. I was far from ready, and my return has been faltering. I was mostly able to keep up my role as a scout leader that I have been doing for much of the last 20 years. This has been a real focus, and I received much support from the community in that difficult time.
On attempting to return to work I found I was failing to do the kind of things I had done in the past. It wasn't until I tried to exercise my brain in this way that my memory issues became apparent. Initially my surgeon called this "accelerated forgetting". I was quite distressed about failing at work, so he suggested I return to the psychiatrist to deal with another adjustment reaction to this new found disability.
I had some psychological tests to help me understand the memory issue in more detail. They explained that I had a mild memory (attention) problem, coupled with a compressed Yerkes Dodson profile (see wikipedia) as a result of radiotherapy. The Yerkes Whatsit thing shows how different peoples performance changes with stress; with no stress people perform badly, a little stress and they perform better, but too much and they quickly perform worse again. For me now, reaching this turning point happens more quickly. So the fact that I was beating myself up for not succeeding at work was entirely counter-productive and got me into a vicious circle where the memory issue seemed like an insurmountable obstacle. So my focus switched to reducing stress in order to maximise the chances of succeeding at work. I had counselling in cognitive behaviour therapy (CBT) and have been taking anti depressants since late September 09. It seems to be working at the moment, but it's early days yet.
Some years back I spent time researching conformal stereotactic radiotherapy for the brain and tracking measurement of volume of brain tumours as part of a European commission research project. I have now been the recipient of such treatment -- strange world!
