tag:blogger.com,1999:blog-5722735165669239585.post7381065421799995931..comments2023-05-24T23:33:57.516+10:00Comments on My Unwelcome Stranger: The Avastin dilemmaDenis Wrighthttp://www.blogger.com/profile/12786035137418348609noreply@blogger.comBlogger9125tag:blogger.com,1999:blog-5722735165669239585.post-44684767257758782942013-09-20T19:06:06.640+10:002013-09-20T19:06:06.640+10:00That's so kind, thank you. It's really ni...That's so kind, thank you. It's really nice to see you again too ;)<br /><br />And do you know what ... I have missed you & the old cafe crowd, so have returned. <br /><br />Do be sure to turn me off - it's just past gin o'clock here so my predictable babble shall soon start.<br /><br />xAnonymoushttps://www.blogger.com/profile/05913684080488915020noreply@blogger.comtag:blogger.com,1999:blog-5722735165669239585.post-20776147988664241572013-09-05T19:27:44.432+10:002013-09-05T19:27:44.432+10:00Julie: thank you. Avastin is a name that I wouldn&...Julie: thank you. Avastin is a name that I wouldn't have thought about either four years ago, and if someone had told me about it, I'd have computed it just fine – a drug that was good for cancer patients – but of course, we aren't talking about me. A brain tumour? It couldn't possibly. Not to me.... <br /><br />I like direct questions. Did Tracey and I make the right decision? Let's put it the other way – what would have happened if we didn't?<br /><br />If we didn't, the probability would have been that there would have been a funeral notice in the paper somewhere between October and Christmas in 2010 inviting all to attend. Everyone would have agreed, except those who know me best, what a jolly fine chap I was and what a pity etc etc and there'd have been a little weeping and everyone could have gone about their business again. Exactly as it should be.<br /><br />But we took the decision and here I am still, after the comparative improvement followed by a slow and steady degradation of my physical capacities, all because the dominoes started falling again within months of September 2010 (when I had the first Avastin dose). <br /><br />This blog and all its contents is the result of resolving to do two things – to tell little stories of my life and my philosophy, and to document <i> from the inside </i>the Avastin experiment for as long as I can.<br /><br />For me it's been much more – a serious journey within. I've had nearly four years to contemplate life and death in a way I wouldn't wish on anyone. Few people get that chance. <br /><br />But the cost has been great, and it has been born by Tracey. She's been the one who's had to do everything – and even worse, that role will increase in every way as the disease progresses. There are no prizes at the end of it. No spouse coming home cured, or even improved at the end of it all. That's the fate of all carers of terminally ill people, and this illness can be one of the most unrewarding of all for the carer. If the carer is partner, the added burdens are immense. But I've said enough for now.<br />Denis Wrighthttps://www.blogger.com/profile/12786035137418348609noreply@blogger.comtag:blogger.com,1999:blog-5722735165669239585.post-58105572952618927352013-09-05T19:24:17.084+10:002013-09-05T19:24:17.084+10:00Suzanne! We are 'old' friends. Why are you...Suzanne! We are 'old' friends. Why are you now avoiding the cafe where we ran into each other occasionally? It is very good to see you. With a little bit of luck – no, if you drop by again – we'll be able to say hello more often.<br />Denis Wrighthttps://www.blogger.com/profile/12786035137418348609noreply@blogger.comtag:blogger.com,1999:blog-5722735165669239585.post-41339259601034393952013-09-05T19:23:14.669+10:002013-09-05T19:23:14.669+10:00Joan: the original position of the tumour is vital...Joan: the original position of the tumour is vital, but as it grows and where it expands to add to the complexity. It doesn't just expand, but like weeds that sneak along under the ground and pop up some distance from the original plant, it can turn up somewhere else in the brain altogether. This is the extended nightmare part of the brain tumour affliction. <br /><br />Extending life for its own sake, which is a mantra some people cling to and horrifies me, is insane in cases like this. But we always have the face that question: when has it been reached? <i> There are fair answers to this question. </i> Save me from these life-at-all-costs people. If evil exists, it is in this twisted notion of caring.<br /><br />Yes, I regard myself as relatively fortunate, even within the cohort of GBM4 sufferers. <i>At the moment</i> – and I must stress those three words – my functions have been and are being whittled away slowly. I imagine that while I'm on Avastin, there's a reasonable chance that that will be how the disease progresses. But even then, there will be the time when the quality of life meter slips into the red zone. How exactly will we measure this? That question is the most important and enigmatic in my life.<br /><br />Without comment on quality, there is no doubt that I'd like to reopen the door which slammed shut on 3 December 2009, on the life I'd like to go back to [but with the knowledge and insight gained since!] - but that's not possible. <br /><br />What people call miracles I call wonderful unexplained – possibly unexplainable – events. I don't expect miracles in my case. But there's no denying that Avastin has given me something that up to now has been wonderful and precious. For Tracey, it can only be described as a mixed blessing.Denis Wrighthttps://www.blogger.com/profile/12786035137418348609noreply@blogger.comtag:blogger.com,1999:blog-5722735165669239585.post-50524952640673306142013-09-05T19:04:09.467+10:002013-09-05T19:04:09.467+10:00Bob: hi – a couple of points:
It can't always...Bob: hi – a couple of points:<br /><br />It can't always be an absolute prerogative, because you've got to take the needs of other people in your life, especially those you are heavily dependent on, into account. I guess your comments come under this qualification.<br /><br />We just never know what's a right and wrong decision, but as the person in the gunsights, I have to weigh this up taking into account everything I think is relevant. It gets harder as the disease progresses and I'm still here. I want to be here as long as possible, but with a fair quality of life and be a bearable person to live with.<br />Denis Wrighthttps://www.blogger.com/profile/12786035137418348609noreply@blogger.comtag:blogger.com,1999:blog-5722735165669239585.post-89164895816370098062013-09-05T08:39:51.702+10:002013-09-05T08:39:51.702+10:00I have pondered this posting long and hard and rea...I have pondered this posting long and hard and read what the others have written too - and find Rachel's comments match my own thinking. One of the most helpful things you've done on this blog is to introduce the rest of us to the good and bad sides of Avastin - a name which most of us would never have heard if not for you. Your post sort of answers some of the questions I've wanted to ask in the past three or so years but never quite dared to do ...and the chief of them I suppose is whether, looking back, you believe you and Tracey made the right decision. I think what you are telling us is that you DID, while making it clear that there are many reasons that govern that decision. That it has given you a considerable extension of life over what you would have had without Avastin. But perhaps more importantly - and correct me if I am wrong - a factor that weighed strongly with you (as touched on by Rachel) is that Avastin has been instrumental in maintaining a better quality of life than you might otherwise have had with this tumour - that it has stopped the tumour taking over too quickly and sending you - not to put too fine a point on it - doolally! Taking away all useful functions including cognitive powers. I do feel that should I ever be afflicted by a GBM my decision on whether or not to take Avastin would be much more informed thanks to following your blog.Julie Lakehttps://www.blogger.com/profile/10268676551467882065noreply@blogger.comtag:blogger.com,1999:blog-5722735165669239585.post-65663382508290063432013-09-03T15:05:31.611+10:002013-09-03T15:05:31.611+10:00Hai there, Denis!
I just popped over, from the de...Hai there, Denis!<br /><br />I just popped over, from the depths of cyber-space, to nosey about & see what you're up to.<br /><br />You come to mind, from time to time. I still have some advice - copied by hand onto paper & pasted to my work computer screen - that you gave me last year (or was it the year before?) via a tweet when I was tackling some essays for my undergrad. Good advice it was too. Thank you for sharing.<br /><br />Anyhow, I won't keep you. Though I thought that, this time I'll leave a comment so you know who's been sniffing around!<br /><br />I shall keep you in my mind. It's nice having you & your considerate advice & jolly goodwill in there. And, of course, I shall pop by again later.<br /><br />Cyber-love to you & yours,<br /><br />SuzShapooze<br />ex-twitterery-type'ah-galSuzanne Radermachernoreply@blogger.comtag:blogger.com,1999:blog-5722735165669239585.post-91150510559227051932013-09-03T10:03:42.974+10:002013-09-03T10:03:42.974+10:00I suppose the position of the brain tumour is impo...I suppose the position of the brain tumour is important in any choice to extend life, if possible. If the tumour is in the cognitive part of the brain, then extending life with Avastin might not be a good choice. Mercifully, Denis, you tumour does not seem to be affecting your reason, imagination, and creativity, although I know you lament the loss of memory. Also, it spared your left hand while impairing your right hand from the beginning, and you are left handed. As you say, every person is different and will make choices accordingly.<br /><br />Avastin has allowed you considerable quality of life, given your situation, and has made it possible for you to give a lot of comfort, inspiration, knowledge, entertainment and perspective to a wide audience. As I said before, I would prefer that you were making Tabby Cat films, but since that cannot be, the Blog is a treasure that the world would be far poorer without, and, for that, I thank Avastin and your decision to take it.Joanhttps://www.blogger.com/profile/04715081266571704126noreply@blogger.comtag:blogger.com,1999:blog-5722735165669239585.post-39887066798134274472013-09-02T19:51:18.579+10:002013-09-02T19:51:18.579+10:00Food for thought on taking responsibility for our ...Food for thought on taking responsibility for our own lives, Denis, and the decisions that go with it. Too many people expect others to make decisions for them - their family, friends, doctor, financial adviser, even the government. The bottom line really is that nobody else can weigh up your situation, understand your feelings, as well as you can yourself. So it is the individual's absolute prerogative to make their own choice. When you do that, you can accept the consequences - good or bad. This is one hell of a lot better than kicking yourself for allowing another to push you into what, retrospectively, turned out to be the wrong decision. (Sorry, teacher, today's sensitivities are making a mess of my syntax ... his, hers, you, yours, their, one's, an individual's! ... but then, a persons got to do what a persons gotta do!). Bobnoreply@blogger.com