Best Foot Forward

Trying to make sense of where we have got to with the boy. Really difficult. My brain keeps jumping from thing to thing in an unconnected way.

Bit like rushing around in a fog. Thoughts appear one minute to disappear the next. And I can't seem to keep thoughts in my head for very long. Thoughts which seem fixed in my mind one minute evaporate the next.

Had to write to a cousin in Canada. Made me realise one thing - that it has been a year of two halves.

First half had no treatment for the boy. But equally, no real hope as no treatment was offered. Was easier to manage as I was off work for the first two months. Able to enjoy time with him and to be able to make sense of all that had happened since diagnosis. Then, at the wife's inspired insistance, we asked for the second opinion. And I went back at work. But it was largely a time of going to the park and the shops. Of swings and slides. Of near normality.

The second opinion suggestion of more chemo set up a very different second half of the year. Chemo for three months, two of which ended up being spent in hospital because of chest infections. Then the scan which put showed chemo had done just enough to put surgery back on the table.

The difficult weighing of the pros and cons of the options and the ultimate decision. A time when our local hospital really came through in a big way. But, even with their help, the uncomfortable realisation that I couldn't completely supress the fear that we were making a major mistake given the huge risks we were taking with the boy over two operations. And worse, that I was prepared for him to die rather than have him live with major disabilities. Doesn't say much for me. All the time trying to remain focused on work when at work. Reduced the time to make sense of events, hence the blog in virtual space and withdrawal in real space (except when looking after the boy, of course).

Then we had the difficulty of setting up the brain scan and operations. Only to have the first operation cancelled because of 'something' on the pre-op scan. Then after an anxious week, another scan. But this showed nothing and the op was back on. Such dread waiting for the op. An unreal time. The boy oblivious and happy. Then the operation itself. Successful but hard to handle the waiting whilst it was going on. Whilst we were trying to deal with the aftermath of the operation the news that the second one should be brought forward. Agreed in a daze - notwithstanding the logic behind it.

Trying to help him recover from the first operation with the awareness that there was another round the corner. Him being so cheery after the first few days. So resilient.

The second operation. More waiting. Shock that the surgeon was so positive about the outcome. Then the strain of managing the side effects and trying to understand their severity. And, for the first time, a sustained period when the boy looked unhappy at what he'd been put through. The added cold water of the scan showing 'something' and so more waiting for the next scan at Easter. And more chemo in less than two weeks. He seems happier than he was but hasn't yet regained the cheerfulness he had before that second operation. Will make any decision about further major treatment more difficult. And how to cope at work through it all, especially if things go against him. But I jump ahead. I must not.

I end the year as full of fear and uncertainty as I did last year. This year hasn't aged me as much as last year did. But it has taken its toll. My moods still veer from anger and energy - when I write more and engage more - and melancholia and sloth when I have nothing to say - virtually or in reality.

To end on something more positive - may all your scans be clear ones.