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.
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.
'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.' - stop that right now. A very moving post.ReplyDelete
Regarding zmkc's post -I agree. Was thinking about this exact issue yesterday, when weeping with emotional exhaustion from the intense years, weeks, days of looking after (not full time, she is in care ,but I'm there most days) my now 88 year old mother. It is so different with you, though I do realise how much of 'normality' Tracey and others around you has had to 'sacrifice' (it's called 'life'; it's called 'for better, for worse'). You are young, really, still your full, creative, giving self. You still have much to offer. I say to mum when she worries that she is 'useless',' you are doing something for me just by being here' and that is true, though I don't say the other side, when I wish desperately just to have my life 'to myself ' again. She's my very old, much loved mother -but you are a man practically still in the prime of life, Tracey's best friend and husband and all that implies. It's SO different.It's also even more sad for you both for that very reason. As for the forgetfulness of ideas ,etc, now you know how the rest of us feel most of the time.Really.ReplyDelete
Julie: I realised when Zoe posted that, that she (and you) are right. It's not my place to decide for others how they feel; in a way it's almost insulting not to give them the right to make up their own minds. So I am not going to make such comments again. Thank you both.ReplyDelete
We look positively on how things are panning out and make the most of the time available. I at least have had and do continue to have the privilege of knowing with great clarity what that time means. Not everyone is that lucky.
PS You're well entitled to have a little expression of the difficulties, IMHO!! It's all been so hard. And if you weren't concerned that you may be 'a burden' then you'd probably be a selfish person who WOULD be a burden (if you get my meaning!)ReplyDelete
Hey, I do like that explanation, Julie!ReplyDelete
If you want to see a lovely and highly amusing piece of writing by Zoe, please read this:
Denis, I stumbled upon your blog a couple of months ago (googling "glioblastoma" and "avastin", or the likes). I was pleased to find a writer with worldly experience and a gift for writing. I very much look forward to your writings, regardless of topic. Unfortunately, my wife's GBM "journey" is quite similar to yours. Avastin has begun to lose its efficacy and she, too, is beginning to struggle with short-term memory. I wish you the best and look forward to reading many more of your posts.ReplyDelete
- Bob Berry (New York, USA)
Bob - very glad to make your acquaintance, and thanks for writing here, and your kind words. I know that Tracey will understand all too well what it's like to be in your position. I have some questions for you and would be grateful if you'd drop me a line at firstname.lastname@example.org One thing people may not realise is how very few contacts one can make anywhere in the world with people using Avastin for brain tumours (or their carers).ReplyDelete