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On 19 July, 2012, I had the first MRI in 18 months. I could have had them more often, but I made the decision not to. I had my reasons and if you aren't in my position then you probably won't understand. As I wrote to a friend in whose medical knowledge and opinion I have great trust:
In hindsight, it would have been useful to have had 4 or 6 monthly MRIs instead of none in 18 months, but as there was no way I would be likely to change much in attitude to ongoing treatment no matter what an MRI revealed, and because I felt comfortable not knowing, I had no desire to. Sometimes there is as much or more hope and contentment in ignorance as there is in revelation. To have had frequent MRIs made me feel a little like a lab rat under these circumstances, but it came to the point where it would be useful, maybe, for later researchers who had access to my medical records to have more information than I've been giving them.
And as well, I should have said, there comes a time when we do need to know if something has changed dramatically. It's not just about me.
When an MRI is finished, the specialist trained in interpreting these images produces a report. In my case, we pick up the images within ten minutes of completing the MRI, but the report takes longer. It goes to my oncologist and is copied to the GP. Our GP is the first to explain to us what he makes of the report, which he did as soon as he got it.
So that's how it goes.
The original report was vague, and the reason for this is that the MRI itself was not revealing in any definitive sense about changes to the tumour over the 18 month period.
This doesn't mean there were no changes. On the contrary, there were ones which could be very significant. Or they could be little more than changes over that period to any live tissue growing where it shouldn't be and that we've been attacking by whatever means possible since we knew about it.
|MRI scan slice 19 July 2012|
But there are changes, as I said. There are cystic areas which have developed. Have they grown slowly over a long period, or are they perhaps very recent? Because of my decision not to have more frequent MRIs, we don't know, and there is absolutely no point in speculating. Are they ominous signals, or the sort of changes, not so sinister, that would be bound to happen anyway? No-one knows.
We do know one thing. I am locked into taking Avastin until it becomes pointless to do so. It seems to have been pivotal in containing the tumour for me for nearly two years, starting at a time when things looked very grim. It will not do so forever, and my body keeps telling me this day by day as I see the physical changes taking place. I can't know about any damage or change to internal organs until that happens.
Things can change in a flash, but so far they haven't. What we do is to continue. As my Buddhist colleague would always say when asked how he was, "So far, so good."
Impermanence and change are two elementary Buddhist principles. The day we ignore them is the one they'll get us.
My good medical friend said regarding this report – and I'm certain it's what the oncologist will say when I see him next:
I think the only insight I can give is you is that few if any people can give you real insight into what this means.
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Thank you for sharing this, Den. It provides a comforting (that word is chosen carefully) insight for those of us who are riding along with you in the wider world. Fascinating and relieving that the Avastin continues to have such an impact on the tumor; accepting the effects it has on your body would be an ongoing challenge.ReplyDelete
Thank you also for your courage and thoughtfulness in posting these updates. We are listening.
Ps. What a handsome head you have :-)
You're right, me lovely. Once you get past the outside layer [skin, hair and all that] it's very handsome, I agree. But what's more impressive is the absolutely massive size of the brain. It takes up nearly all the room! Doncha reckon?Delete
Thanks for your kind words and pumpkin soup.
Thanks Denis. Following along on your interesting journey.ReplyDelete
Thanks for following it. Re your nekkid turtle, I can only tell you about nekkid snails. They're slugs.Delete
Well -this is looking ok, considering, and that is GOOD, considering! We take another breath or two. I am attempting to remember the changes you've said you are noticing taking place 'day by day',as a sort of place marker: less balance, skin spots from the avastin, heavier walking? Memory? This is probably all listed in 'what's new'.ReplyDelete
I'm with Ruth - somewhat comforted. Thanks for posting.
I suppose for me was the relief that at least there wasn't something in there that's now the size of a mandarin. I can never afford too much optimism because I've seen the way change can happen very rapidly, and a GBM4 is the brain tumour that does. It doesn't go away and it's always waiting for its chance to strike. So we do what we do, with as much care and persistence as possible, and take nothing for granted.Delete
Yes Denis, we are listening. Thank youReplyDelete
And thanks to you, Debbie. I hope your NZ trip is going well.Delete
Oh, that's right - not till Tuesday. Brain's not working properly as I've shown.Delete
Perhaps this means that some of your decrease in mobility is due to your fractured spine and a deep unconscious fear of falling again, hence the body seizes up in order to protect itself.ReplyDelete
Your mother tells you to get some fresh air and some sunshine on your skin. Your bones need Vitamin D in order to take up the calcium that will strengthen them. If you can't get enough sun, take Cod Liver Oil. In fact, take both. CLO is rich in Vit D.
Relax and enjoy. It looks as though you're here for sometime yet.
Lobby Tony Windsor for an MRI machine in Armidale before RT knocks him out.
All excellent points. I do keep wondering about the impact of the fractured spine, but can't ignore the fact that the process of deterioration in walking/balance started a long time ago and the rate seems now exponential.Delete
With you all the way on Vit D. and have no trouble with CLO. Magic stuff. I must say that given the strength of the fall, my bones must be holding out fairly well. I'd never broken one in my body my entire life before.
We can only hope re Para 3. Everyone of course is grabbing the positives, as indeed we are and must, but on the inside of all this there's a perspective nearly everyone bypasses. And I'm not just being Marvin the Paranoid Android. I'm being more objective than most. It's a narrow – and narrowing – path I tread.
An MRI or advanced imaging machine in Armidale would be nice – for an awful lot of people.
I'm not bypassing anything in my own mind, but leave the discussion to those who know you well enough and who know your thoughts on the other sides of this situation. If a bit of CLO can help, well then that's where I put my attention.ReplyDelete
I heard an item on ABC Rn this morning in which a woman described how she used her baby's walker to learn to walk again after a car accident. Goddess knows how she did that! I'm not advocating that you try it, but I thought it serendipitous that it should come up so soon after our previous conversation on walkers.
I missed this till now. I understand. Youth on the side of the patient is a huge benefit. Repairs are quicker and retraining of brain easier, especially for accident victims. Where it's difficult is when a growing tumour is constantly undoing good physiotherapy.Delete