Pardon my feeling a little blue today. I wish all the mothers well on this Mother's Day in Australia and wherever else it's being celebrated today. Jan and Lyn will be feeling a bit as I do. The first time in our lives we can't greet our mother on this day.
Sunday, May 8, 2011
Shooting from the bastion
I began this as a simple 'WHAT'S NEW' entry, but, like Topsy, it just grew.
Time to look back over the week. It was a transitional one for the three-week cycle. That is to say, having an Avastin infusion on Wednesday is a watershed event. It marks the point between the time my batteries are at their lowest and the feeling of renewal that comes with Avastin’s attack on the tumour and any inflammation of the brain that has been building when my defences were at their lowest earlier in the week.
I have felt a general building of strength since Wednesday and a renewed desire to tackle the things that are difficult when the spirit flags, as it does towards the end of the three-week cycle. I don’t have headaches and I feel renewed strength in the weak right arm.
I want to do more exercises to strengthen stomach muscles, as the six-pack in the abdomen is more like a German beer barrel right now. My face has become distressingly pear-shaped, and a generous looking pear it is too.
Damn the steroid! Even though it’s the smallest possible dose I can get away with.... but I shouldn’t say that. The steroid is an even more important control mechanism now that the strong seizures returned last week for the first time since I started taking Avastin.
I should be more grateful for the good the Dexamethozone does. Without it I would not have survived the gap period before taking Avastin last September.
My short-term memory continues to decline alarmingly. Sometimes it seems like information is being fed into the pipe on one side of my head, passing through, and simply dropping out at the other end. I find myself struggling to bring to mind many words that would come to me as a matter of course in the past as I speak or write. People’s names. Dates and times. I develop memory tricks that help in some cases, as long as I don’t forget the trick!
This has its amusing side but the fact is, I am losing the capacity to keep everything in the shopping trolley. (In olden times I would have thought up a better analogy, as things don’t usually fall out of shopping trolleys, but you see, I compromise these days, even with words and ideas. Oh... and it does stay in the trolley after all, I just can’t find an item in there sometimes when I need to be sure I’ve got it.)
Enough with the metaphor – you know what I mean.
More distressing is to have been lying there in bed, thinking, or sitting here at the computer, developing an interesting idea for quite some time, being interrupted in some minor way, and experiencing the dissolution of the idea that had so grabbed my attention only moments before. The black hole effect. I feel as a sensation that integrating network of thoughts slipping, sliding, and then disappearing so fully that not a trace of it remains to drag back into memory. All I have is the piddling thing that interfered with it in the first place – the barking dog or asking myself what the time is....
I can even forget to drink properly as I sip that large glass of water while musing about something else when I first come out to the kitchen in the morning, and find myself coughing and spluttering and waking the household.
So I’m a boy. I can’t do two things at once, like think and drink. I have to focus carefully on the drinking of the water these days. The Buddha would approve. ‘Washing the dishes while washing the dishes’ is the term his disciples use. Focus fully on one thing at a time and you’ll do it better. Then move on mindfully to the next, and give it your full attention.
(This ‘drinking problem’ really isn’t all that unusual, I suppose. Towards the end of her life, my mother found drinking a glass of water without its going down the wrong way so challenging that it was one of the reasons she wouldn’t drink much of it and became dehydrated. (Bottles of water are no solution, by the way. Nice idea, but I’m even getting worse at that now than drinking from a glass.)
I don’t like these changes, either physical or mental. I still have vanity, which is a burden I would be better off dispensing with. BUT perhaps it has its uses, as it fuels a desire to get back to looking and being more ‘normal’.
I don’t like the weakness of my right leg or a declining sense of balance. This is why I do exercises just after getting up to improve both, as well as ‘press-ups’ in the doorframe for upper body strength.
Psychologically, I have to admit that the battle is a wearying one for the spirit, like rebuilding a sandcastle twice a day for a year and a half every time the tide washes it away. Everyone around me is wonderful, especially Tracey, never complaining, dealing with my memory lapses and clumsiness with great love, patience and endurance.
The downside to this is that I feel more and more how useless I am and how many of the family’s resources are taken up with caring for me alone – and how much time and effort has to be put into the battle to extend my life. It’s being holed up in the fortress tower while the enemy is battering down the door.
The last bastion.
What exactly is a bastion anyway?
I just checked the precise meaning. That’s exactly what I thought it was. You see what I mean about forgetting? But how nice to get it spot on, instinctively.