Tuesday, 13 December 2011 9:30 AM.
Saturday, 10 December 2011 2:55 PM.
Saturday, 26 November 2011 10:10 AM.
The quality of mercy is not strainedIt droppeth as the gentle rain from Heaven
Friday, 18 November 2011 6:45 AM.
I realised doing that that I write too much and blather on in these postings, so I've made a new resolution to keep it short and to the point.
Let's see how that holds up.
It's a glorious sunny spring morning here in Armidale. I'm feeling quite good, and Tracey is continuing to improve, but it's a slow process. Recovery from back injuries takes time, and resting the affected area is the best way.
I'm developing a silly pattern of sleep, and I'm going to have to address it. I'm tending to hit the sleep wall later and later, which extends the wake period into pretty anti-social hours. It means not being tired till about 2 am but then not waking till 8 am. By the time I exercise and eat some breakfast with medications it's after 9 am.
I want to check my email, the news, some unread articles. I want to write here on The Blob. It's well into the afternoon by then and time for a new round of medications and a light meal. A walk, another check of the email perhaps... twitter of course!.... and then it can be lateish in the afternoon, but I must sleep.
I may wake between 6 and 7 pm! Some exercise just to keep the joints moving.... Our evening meal, some TV - a movie we sit and watch, sometimes starting it at 11.30 pm or so, with a cup of tea and late evening medications.
That's where the 2 am 'bedtime' comes in.
But at least I sleep then, usually. I waken with the sun streaming in and the day starts again, half remembering strange dreams I now want to claw back into consciousness. How do I know they're fascinating, or were? I just do.
Usually I am going somewhere; a journey. Mostly I'm alone. Sometimes it's on foot, sometimes driving. I don't know where. Occasionally it's into some maelstrom - a violent storm, but not usually.
It's usually about people.
Sometimes I wake with the sort of headache you have when you just haven't had enough sleep. By the time I get up it sometimes clears. It's hanging around this morning, though.
There are quite a few red blistery patches on the skin of my right arm that have developed over the past few days. They're almost certainly side-effects of the Avastin I had last week.
The right hand remains slightly swollen, the knuckles always tight. That's a by-product of seizures. The right foot and ankle remain slightly swollen. Even with the daily injections of Clexane and the exercise, that doesn't change.
It's 16 days since the last seizure. Possibly I'm tempting fate by mentioning that.
There's no guarantee that tomorrow will be better, but we hope so. It's a trying time for Tracey, who's frustrated that she can't do things she normally does. But there's no good reason to think it will be worse. These things need rest and peace.
We are able to do both. At least, I'm feeling more lively than for a year. It's an ill wind..... or horrible back pain.... that does nobody good.
I feel tired now but am planning a walk around the block before hitting the hay. It's a lovely day and looks like getting warmer towards the weekend.
It's the birthday today of one of the most amazing people in the world - Elvie Brown. 91 years. Well, in the world of my sisters and me, she is. She's four days younger than my mother, and is my mother's niece, by marriage. They were more like sisters, and she was, in our extended family, like an extra mother to us as children, though technically we were 2nd cousins. Don't try working that out!
Happy birthday, Elvie. We love you. You'll be having constant phone calls all day no doubt and I'm almost afraid to add to them, because I know the effort each one must be for you.
Me today? Out of sorts. I slept badly for no particular reason and feel tired and unenthusiastic about most things. Brain fog has set in for the moment. Perhaps it's the downside of 2 seizures in 4 days, both physically and psychologically. Yet I don't want simply to go back to bed.
Me, repeat after myself: I will take rest at some stage every day, whether I think I need it or not.
I didn't do that yesterday because I didn't feel tired. Logical enough, but I pass through a sort of time-body sleep barrier, and then go on till what is a normal bedtime for me, feeling pretty tired by then.
I settled down into bed but it was one of those nights where no position seemed comfortable, as if I had an extra arm and a leg to find a place for and nothing was fitting.
Then I had a seizure - hard to place on my personal Richter scale as it was intensely in the right hand and not as great elsewhere by comparison. It was a couple of minutes long, maybe three at most.
It left me feeling somewhat nauseous, which isn't usual. Sometimes these seizures grab the stomach muscles and internal organs on the right side, and give them a shakeup.
I eventually settled and slept. It's unsettling because, like an earthquake, I can't be sure if the aftershocks will happen - or indeed if a more serious one is to come.
I don't feel rested this morning. Maybe I will sleep not too much later. My body feels shakier over all.
It looks like a nice day for walking. The work I've been doing on the right hand - manipulation, picking thinks up etc - that's been put back by the seizure.
It could have been worse. The one thing that continues to puzzle me mightily in all this is: why, when for some eighteen months, every seizure was a daytime event, now each one happens in the night? I don't get it.
|The Birthday Girl!|
Sunday, 18 September 2011 10:05 AM.
A roundup of last week's medical history really doesn't say much.
Then again, maybe it does. A steady, quiet environment punctuated by a couple of nice visits from friends seems to be how it works. That way I have as much stability as there is likely to be.
But it's obvious I have to stick to these rules. Last night we went out to a nice restaurant with our dear friends, the Mackenzies, to have a preliminary celebration of a certain significant birthday on Monday for a certain significant lady. I had the equivalent of a glass of red wine throughout the evening - not a long one - and some coffee, which was excellent but quite strong, at the end. I didn't have dessert, though was tempted.
I knew later in the evening I was a candidate for a seizure. My little finger on the right hand gets slightly twitchy and curls a bit. By itself that doesn't make a seizure inevitable. But I also felt the stiffening of the arm and the heaviness of the limb, which is a near certain sign I'm in for it. It came at 4.45 am and was about a 7 on my Richter scale, travelling through the body and leaving me nauseous. About 3 mins I would say, maybe a little longer, with a few minor aftershocks. Even now some 5 hrs later, the little finger is trying to tell me something I don't like. My vision is quite impaired at the moment, and speech isn't great.
I could be negative and say, a lot of hard work on the arm and leg has been undone, but then I think maybe if the work hadn't been done, the effect might have been worse. I am sure I recover quicker these days even though the seizures are as strong as they used to be.
The problem as usual is trying to second-guess contributing factors. It may have been going to happen anyway. I can't pretend there's no sign of growing tumour activity. Then there's going out - once in a month! - lively company, different food (though mine was quite bland), the amount of red wine - one glass! - the coffee, a day before where I didn't have a day-sleep.... one or some or all of these - it's impossible to say. All I know is I am going to try to keep the variables to a minimum, renew the exercise at the right time and build it again slowly, and take it very easy for the next week.
Saturday, 17 September 2011 10:20 AM.
No-sleep days do muck around with my circadian rhythm, there's no doubt about that. I was awake early after going to bed quite late, and though I feel quite good in other ways, I am tired right now and will need to sleep again very soon.
Tracey has gone for a walk. She's feeling better. It's as normal a Saturday morning as one gets. And another week has disappeared from all our lives forever.
Wednesday, 14 September 2011 4:30 PM.
I should have written something here this morning, but I got caught up with other things and then my brain said sleep, and I did. Sensible lad. Though to be truthful, I don't have much choice when it does say that.
I've showered and drunk some water, Tracey clipped my fingernails, and made us a cup of tea. Here I am. I never get used to someone else clipping my fingernails, but if I try using the left hand, the right arm and fingers aren't cooperative, and I can't clip with the right hand. Kinda like a blind man trying to describe what's happening out in the street to a deaf man. That's my left and right sides.
Yesterday was interesting in one way. I felt no urge to sleep at any time during the day. I can't tell you how long it is since that happened. I went to bed a little earlier than usual - not much - and woke at about 6.30 am, feeling good. Even balancing on the tips of my toes (well, what I call the tips - some may disagree!) was better than usual. The tai ch'i elements have improved. Getting down on the loungeroom floor and getting muscles obeying commands from somewhere in my brain yesterday always helps. But I did hit that wall again this morning, not that that's bad. It just means that occasionally I may escape a day that I must sleep while the sun shines, and that's probably in the middle of the Avastin cycle, when on average I am as good as I am going to get for that cycle.
No seizures this time round, touch wood. Nine days since the last. That was the morning after I had some red wine and lively company. It seems I am destined for the quiet life. No hitting the bars or nightclubs for me any more, or 6 am surfing on Dumaresq Dam amongst the sharks.
Tracey is definitely on the road to recovery, and it seems she's escaped the 16 week cough. Touch wood. I'm not superstitious or anything but I have to say that, and touch some real, solid timber. Call it insurance. Call it anything you like. Taureans don't believe in astrology and we don't believe in kismet.
It's OK, I touched wood when I said that.
Tracey hasn't yet made it out of bed today, but was a bit better as the day went on yesterday. I just hope the recovery continues today.
XoX keep on keeping on. You're doing great!
August 29, 2011 2:27 PM
Denis Wright said...
Thank you! (from across the Indian Ocean...)
August 30, 2011 5:51 PM
I came across your page by accident about 2 months ago and have been reading it.You are one special and strong person.I had brain surgery about 11 years ago nothing like you thou.I had 2 brain aneurysms ready to burst,13 hours on the table and 2 surgeons saved my life and all i lost was my smell.After 10 years of scans have just got the all clear.Had to learn to do some basic things again and memory was crap and ended up getting depression from it and wanted do kill myself but all that is over with now and it was a struggle.You keep doing what you are doing and you are awesome.
jayne from Melbourne vic
August 31, 2011 3:25 PM
Denis Wright said...
Jayne: thanks very much for your comment. I don’t know about special and strong. I draw on strength from those around me who put up with me no matter what. Other than that, what is there but to go on and make the best of life? As indeed you would have discovered. I feel I have been fortunate. Without family and friends I would have been dead a year ago. I cannot but be grateful that I can still sit here and type this.
It is wonderful that you had such a good recovery. It is obvious to me that this was partly due to your own strength, without taking away from the extraordinary work done by surgeons and other medical staff. I never used to watch such programmes on TV as RPA, but now I see them and marvel at the skill and patience of the people involved.
Depression is a terrible thing. If you have never suffered from it then you can’t imagine it, no matter how hard you try. No-one can really understand living daily with such things unless they’ve been there.
In that regard I have been fortunate again, in that whatever I’ve been through, I have never been depressed in that ‘black dog’ way it is often referred to by sufferers. (See http://www.blackdoginstitute.org.au/public/depression/causesofdepression/index.cfm ) It may yet be my lot to become so, but so far not. You have weathered that storm and I congratulate you. I know the reason I haven’t is largely the love and care I receive every minute of the day and night, in this house.
Thanks once again. I wish you continuing good health. In life, to all complainers about First World Problems, health is all you really need.
September 1, 2011 11:56 AM
I thought it might be an idea, on the last Sunday of August, to review the month today rather than just the week. Looking through the diary, it’s simply a matter of condensing and concatenating some details.
Saturday, 20 August 2011 11:20 AM.
The feeling that spring is on its way is cheering, as another late-winter Armidale day dawns. It offsets to some extent the lethargy, lassitude, torpor – whatever you want to call it – that comes with this stage of coping with the effects of the tumour and the medications that try to control it. I have had no seizures in this cycle so far (yes, I found some bare pine wood to touch while typing that!) but there are signs that in other ways I am close to being back in the pre-Avastin days of exactly a year ago.
Another typical winter morning in Armidale, and 19 degrees is tipped for the max! For us, that’s saying spring is on its way, and it’s very welcome.
(Looking at this, it's not much different from what I said in the last July entry, which illustrates all too well what I was saying about memory!)
Tuesday, 2 August 2011 9:00 AM.
I can't say there's a lot to report. Our household goes about its business quietly and the world goes on. There are things I will write about, but as there's nothing major to talk about healthwise then I'll spend the time doing something I think is more productive!
Sunday, 31 July 2011 9:35 AM.
The last day of July 2011. The pace of life is disconcerting. But we have life, and that's what matters. Still, it has to be a fair quality of life, otherwise there’s not much point to it.
Time for a think about the past week. All in all, it’s been quite good. The Avastin has no doubt totally infused my system and is doing its job keeping Brian at bay. (Brian, for the uninitiated, is my brain tumour.) He’s there as a constant shadow, taunting me with seizures when I least expect them, but in the past week there have been none, even though there have been signs.
I confess to feeling more tired, but that’s because I know I’ve been overdoing it mentally, and some pure vegging out is required. Yet there are so many things I want to write about.
On the negative side, the lesions, if that’s the right word for things that look like blood blisters, keep coming to the right arm. They are not painful but remind me of the effects of alien chemicals that have flooded my system in the past 20 months. I find it curious that they should affect only the right arm – the one that took the brunt of the tumour activity and still does. I don’t get how that works. Why just that arm?
My body continues to feel very heavy and out of kilter. It’s only a matter of time before I really lose balance somewhere and come down. I just hope it’s a comparatively soft landing, as I can’t really afford the other sort.
That aside, I don’t have immediate cause for complaint. I’d like to take a longer, clinical look at what the future may hold, with the experience of the past 20 months behind me. But not right now.
Friday, 15 July 2011 7:45 AM.
Peace reigneth over our household as things seem to have settled medically, for the moment at least. This offers the chance to deal with the vicious cycle of seizure producing stress, and stress in turn creating the conditions in which seizures seem to flourish.
Seizures result in lack of control over circumstances. Calm, order, routine and quietness tend to restore control.
Thursday, 14 July 2011 6:35 AM.
I'm feeling more relaxed today and less like there are seizures hovering. We're all hoping that Brian's malignant influence has been quelled for the moment at least. I have had swelling of the ankles over the past week - not a great deal and mainly the right one, but enough for a warning that fiddling with the Clexane regime over past weeks may have been negative.
We've gone back to the full strength Clexane injections, and the stomach will just have to cope with the onslaught. That's better than having a clot start to travel round my system.
So, all is OK and we go on. Oo bla di, oo bla da.
Oh, come hell or high water, I am going to finish the bottom-pinching story this morning. I haven't felt like doing that since we learned that the daughter of dear friends suddenly developed a very serious medical condition, but it seems that may be resolved favourably over time. I haven't felt much like laughing since we heard how that began.
It puts into perspective the relative unimportance of the condition of an ageing man when compared with that of the young woman in her early twenties.
Wednesday, 13 July 2011 9:55 AM.
Yet another seizure before I went to bed last night convinced me that horizontal was the best way for me to be, i.e., sleeping. I woke early but feeling rested, and apart from one warning 'lock-up' of the arm (the best way to describe how the pre-seizure sensation is) it seems to have stopped. I used some methods that sometimes work if I get enough warning, and it's settled down, for the moment. I don't think it's the last of it for the day, though.
Tuesday, 12 July 2011 8:40 PM.
Another seizure early this evening. A 5.5 on my scale but not the best of events to happen. I am now taking it easy. I admit that I may have overdone things this morning. Other than that I am OK.
Tuesday, 12 July 2011 9:50 AM.
I'm getting there. I had some things to say yesterday that have been superseded by a seizure at 4.45 AM in Minus 4 degrees C temperature. My very own internal earthquake at about 6.5 on my Richter Scale. All those swearwords that I don't say according to my story yesterday I surely was up for when I was shaken awake. I'll talk about health matters later. You have been warned.
More later. I have a couple of things I need to do and I will go back to sleep before long.
It's Lyn's birthday! Happy birthday, Lyn. Clickety-clicks. Wow!
Monday, 11 July 2011 9:35 AM.
Oh well, it seems that wasn't supposed to be posted to the world. I had written quite a lot, and this was being saved back online through the blogging program, but something went wrong. Opening it again I find last Friday's entry and not the current one.
That was supposed to be failsafe. Thanks, Blogger program. Bugger!
Back to the drawing board. This time, I'll revert to my usual practice and write anything longer than a sentence or two to a Word doc.
In the meantime, please have a chuckle at this! If you've ever had your bottom pinched, you'll enjoy it, I suspect.
Friday, 1 July 2011
Look at that date. I've made it through half the year 2011.
That's pretty amazing, because this time last year you wouldn't have wanted to make a bet on it.
Here's a pic of me, a year apart. The first one shows me with arm disabled, in a sling, and right leg not much use. And that was my 'good hair' side!
The second shows me with hair, fat cheeks, and though you can't see it, more use with the right arm.
Wednesday, 29 June 2011 6:15 PM.
All is fine here. Apart from balance issues, which seem to be increasing, I really couldn't feel all that much better under the circumstances. It's a week till the next Avastin hit and it was only on those days just after the last treatment a fortnight ago that there was any evidence of seizure activity in this cycle. Let's all touch wood on that!
The funeral of my Aunt is over as I write this. For my family I will post a copy on the blog.
We are very happy that Alice and Sylvia will be up here all the way from Melbourne on Saturday.
Tuesday, 28 June 2011 9:20 AM.
I am fine once again, but sad today to learn of the death of my mother's sister, our Aunty Mavis. She was a big influence on my life for reasons that I have explained in a short personal eulogy to be read at her funeral.
Monday, 27 June 2011 9:35 AM.
The good part of the cycle continues. Let's not jinx it! :)
Sunday, 26 June 2011 11:25 AM.
I woke up at 9 AM today, feeling very good and refreshed. It will be great if this keeps up. Tracey and Christian have gone for a vigorous walk in the bright sunshine. I really like that they can do this in a place as pretty as Armidale. Later today, all going well, Tracey and I will go on a much slower one!
I hope everyone is able to do just what they please, today at least. It's nice to start the week on a positive note.
Saturday, 25 June 2011 9.20 AM
For the moment, best simply to read this.
Friday, 24 June 2011 9:13 AM. 9:20 AM.
All appears to be going along as usual. At the GP's surgery yesterday, we passed on information from the oncologist and we completed an Advance Care Directive, which I discussed in my posting today.
This is what we had been planning to do and there's nothing hidden between the lines. It's normal and sensible. I've said many times that if circumstances change, I'll keep you informed here, and I've done that and will continue to do so. I just don't want anyone to think that things have taken some dramatic change.
Thursday, 23 June 2011 9:50 AM.
So far so good for the morning. Later today, we go to visit my GP.
Wednesday, 22 June 2011 8:10 AM.
One week after the Avastin infusion, things seem to have settled down into a more normal pattern after the unexpectedly jarring first day or two. I slept peacefully and woke sometime after 7 AM to a cold, sunny Armidale winter morning. Now I would like to write one of the three tales from my past that have been going round in my head. I don't know which of these till I begin - that's the odd bit.
Half the year has all but passed. I was just getting used to 2011....
Monday, 20 June 2011 3:30 PM.
We've just returned from the Oncologist's surgery. My oncologist, Dr Nick Pavlakis, has a formidable reputation in his field. One of the most heartwarming stories about his involvement in brain tumour research and treatment comes from 2003, but it timeless. I'm very lucky to have my treatment supervised by him. He visits Armidale from Sydney regularly and takes on patients like me, even though the demands on his time and patience are relentless.
We had a good discussion based on a report I prepared for him, but I will leave that to a blog entry (still to be written), as this isn't the place for it. This is just to let you know that things are going along as normally as they can under the circumstances, with no dramas and no major events - happily, no seizures!
Happy birthday, Alice!
Sunday, 19 June 2011 8:45 AM.
A week of ups and downs, it's been, but finished better than it started. No seizures again last night, but it was a close call as I woke with flickering tremors and that 'clamped' sensation in the right arm which threatened to turn into a full-scale seizure. Finally in this limbo land, I decided a radical approach. I clasped both hands together above my head, and began to work the muscles on the right side, and then went on with the routine I described yesterday.
Either a seizure wasn't going to develop in any case, or the activity interfered the seizure mechanism, because it settled down, but I may not be out of the seizures wood for today yet. I am still feeling like I weigh a hundred tons or so.
Tomorrow we visit the oncologist and I will report to him developments since we last saw him. It has been almost three months since we last visited. There won't be earth-shattering revelations that emerge from this visit, I expect.
I have some interesting comments to respond to as the result of discussions emerging from other postings, but they'll have to wait for a little while - but just let me acknowledge them here and thank those who've participated so far.
Saturday, 18 June 2011 10:15 AM.
No seizures last night, though I must admit to going to bed apprehensive about it for the first time. I resumed 'normalcy' as much as possible this morning with routine and exercise but intend to lie low for most of the day. Forgive any failures to respond to emails, and other places where I might usually be found online!
Friday, 17 June 2011 9:15 AM.
The execrable Brian demonstrates yet again how quickly things can be turned around. I understand how the people of Christchurch must feel. At 4.45 AM today I was jolted awake rudely by a strong and persistent personal earthquake in my body.
Although the new infusion of Avastin was just the day before yesterday, I had the the most powerful seizure I've experienced since taking the drug. It took hold of my right side bit by bit, but not letting go of any portion it had taken control of. Sometimes it is selective, but not this time, and each part of my right side had to yield.
After about 3 minutes it stopped, though this time with threatening aftershocks over the next few hours.
Yes, it is dispiriting, especially after an entry like yesterday's, but I won't dwell on that as there's nothing medical to be done. The only approach is psychological, though to be woken from deep sleep by a seizure doesn't give you much time to get the brain into 'combat' mode, if that's the right term to use. (It's not, really.)
What it does mean is that this 3 week cycle is going to be fairly critical in helping anticipate what's ahead. I won't do the 'what ifs' here as there's no point.
As usual, we'll proceed day to day and I will write the last tiny part of my encounter with Kahoutek, begun here.
Thursday, 16 June 2011 10:00 AM.
I feel more invigorated today after the treatment yesterday. I really don't know how much of this is psychological but I do recall that at the beginning of the last cycle it seemed to take some days before I felt any benefit. In the end, it doesn't matter really which it is, but I have been able to do some things this morning that I wanted to do, as well as exercising. I hope the feeling lasts a while!
Wednesday, 15 June 2011 12:45 PM.
The Avastin infusion went very well. Time for me now to rest and let it do its work....
Monday, 13 June 2011 1:10 AM.
So fast does time now fly that I didn't even do a Sunday posting. My waking hours don't seem long enough to share with family and friends.
I realise that I didn't mention last week that the blood tests showed the Dilantin levels have remained stable for many months. Dilantin is one of the two anti-seizure drugs. That is good news. There is actually no way of measuring the other one (Keppra) so it has been trial and error, but we are fairly certain it is at the right level as it has been unchanged in dosage for months.
I have had headaches after waking today, which I think is the tumour making the most of the days before the Avastin infusion on Wednesday to rally. I am unsteady on my feet though I get around well enough so that I can do most things. My body feels very, very heavy. This is I think results from the fact that signals from the motor centre are being impeded, but the effect is the same. But as long as it remains confined to this part of the motor centre things are manageable.
I am experiencing some slight difficulty speaking clearly, I have tinnitus most of the time, and hearing and sight clarity come and go. Loss of short term memory is an ongoing problem.
It will be interesting to see if there is an improvement in some of these by the end of the week, as a result of the Avastin treatment midweek.
To finish what looks like a litany of complaints (which it's not, just a statement of fact) on a positive note, I have had no more seizures since the two last week, and hope to get through till Wednesday without more.
Otherwise, you know, I'm pretty damn good!