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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 Who's 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 48 year old married man with a wife and 2 teenage sons.
Two years after treatment I've got back to full time work. I first went back six weeks after radiotherapy in Jan 2009, when they told me I would be ready. I was far from ready, and my return has been faltering. I have mostly been able to keep up my role as a scout leader that I've been doing for much of the last 20 years. This has been a real focus, and I have recieved much support from the community in this difficult time.
I discovered a "space occupying lesion" in my brain about 8 years ago 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 08 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 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.
On attempting to return to work at the beginning of 2009 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 recently the focus has been on reducing stress in order to maximise the chances of succeeding at work. I've 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!
Feb 2010 - 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.
September 2010 - I seem to have achieved a plateau that probably represents the "new normal" for me. My surgeon says I have probably achieved all the recovery I am going to achieve. I gave getting back to my old role my best shot, and 2 years down the line from surgery/radiotherapy, with 2 failed attempts at returning to work, I now seem as though on the 3rd attempt I have got to a point where I can declare some sort of victory. Today I start a new role which though deeply technical, ought to be less nebulous and more reliant upon skills I had before all this kicked off. I still have memory/concentration problems, and my energy levels are not where I would like them to be, but all in all I think I have escaped relatively lightly. I had vision tests recently to see if the peripheral vision issues are now sufficiently small to allow me to get my driving licence back.
Oct 2010 Update: 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.
May 2011 - 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.