Well, Gaye and I are officially queenslanders now. We arrived on Saturday morning from Canberra, and immediately installed ourselves into our new home - and that's exactly what it feels like already. Of course, Gaye's mate Rob and our daughter Nicole - along with others - had done an enormous amount of unpacking for us, which made it so much easier. Thank heaven for family and friends!
I had my initial appointment with the oncologist we've been referred to: Paul Vasey. We're both very impresses. Youngish guy, maybe early to mid-40s, but very sharp, very empathetic. He's recommended that I start a four cycle (two month) course of something which escaped me at the time, commencing this Friday!! So much for building the strength and weight up.
In the meantime, I'm cruising along. I'm sleeping poorly, so each day is a series of mini-naps, which then of course makes it harder to sleep at note. I've had the doctor write me up a script for a sleeping tablet, so we'll see how that goes. Tried for the first time last night, but conditions weer not good, with present wrapping happening at 12.30, etc, but indications are hopeful. Roll on a full night's sleep. Maybe.
No change to cancer or prognosis. We're still playing an end game of uncertain length, but I have to say that the idea of a change of process and poison is a positive move: I hope that this time after it all happens, we get some relatively good news.
Tuesday 25 December 2007
Saturday 1 December 2007
Surgery Rules!
Well, my little bout of major gut surgery is over, and shows good signs of having been successful, at least in palliative terms.
I went in, very nervous, on Saturday afternoon, to be cut up by a bit of a Canberra Dream Team. 3.5 hours later, I came into recovery - apparently but unsurprisingly wisecracking all the way. I remember nothing of it, but Gaye tells me it was all very funny, and had the surgeons in stitches!. I actually woke up (sort of) at around 9.30, to the news that Labour was in. That made me feel immediately better.
The time in the high dependency unit was unpleasant, mostly because I had tubes hanging out of me all over the place: nose, side, neck and a catheter. Yuck. Also the bloke in the bed next to me who had an hip replacement snored all night, and wallowed around like a whale. Poor bugger also had 7 hours of renal therapy a day and diabetes. Sometimes I feel a little inadequate when faced with the problems of others!
I've been down on the ward since Tuesday, and every day I feel a little better. I've had practically no pain, which is good, and I've farted and crapped, which is even better from a surgery point of view (honestly!). I'm now totally tube free, so I get in and out of bed at my pleasure. I do get a period of unpleasantness most mornings, where I get flushes and feel unwell, but that passes after an hour or so. And I've had a couple of vomiting spasms over the last two days, but they've been pretty unproductive, so I suspect they're indicative of nothing except repair.
Prognosis. Understand that this surgery was a bypass, not the resection we were hoping for, this means that it was entirely palliative. The cancer is still there, and heading north up the duodenum. This means effectively that I have no medium or long term future, and its uncertain how long my short term will be - it all depends upon what the very unpredictable tumour does. It could be 6 months, 12, or even three. All of which is a bummer, but............. them's the cards.
Brisbane is now ramped up. We are out of the house (settled yesterday) and have a rough date we can get into the house up there (18th December). The only uncertain thing is my health. As soon as the doctors are happy that I'm fit to travel, and don't nee then anymore, we're off. In the meantime, we're downsizing the Lexus (Oh no!) and getting into something a little cheaper.
I went in, very nervous, on Saturday afternoon, to be cut up by a bit of a Canberra Dream Team. 3.5 hours later, I came into recovery - apparently but unsurprisingly wisecracking all the way. I remember nothing of it, but Gaye tells me it was all very funny, and had the surgeons in stitches!. I actually woke up (sort of) at around 9.30, to the news that Labour was in. That made me feel immediately better.
The time in the high dependency unit was unpleasant, mostly because I had tubes hanging out of me all over the place: nose, side, neck and a catheter. Yuck. Also the bloke in the bed next to me who had an hip replacement snored all night, and wallowed around like a whale. Poor bugger also had 7 hours of renal therapy a day and diabetes. Sometimes I feel a little inadequate when faced with the problems of others!
I've been down on the ward since Tuesday, and every day I feel a little better. I've had practically no pain, which is good, and I've farted and crapped, which is even better from a surgery point of view (honestly!). I'm now totally tube free, so I get in and out of bed at my pleasure. I do get a period of unpleasantness most mornings, where I get flushes and feel unwell, but that passes after an hour or so. And I've had a couple of vomiting spasms over the last two days, but they've been pretty unproductive, so I suspect they're indicative of nothing except repair.
Prognosis. Understand that this surgery was a bypass, not the resection we were hoping for, this means that it was entirely palliative. The cancer is still there, and heading north up the duodenum. This means effectively that I have no medium or long term future, and its uncertain how long my short term will be - it all depends upon what the very unpredictable tumour does. It could be 6 months, 12, or even three. All of which is a bummer, but............. them's the cards.
Brisbane is now ramped up. We are out of the house (settled yesterday) and have a rough date we can get into the house up there (18th December). The only uncertain thing is my health. As soon as the doctors are happy that I'm fit to travel, and don't nee then anymore, we're off. In the meantime, we're downsizing the Lexus (Oh no!) and getting into something a little cheaper.
Friday 23 November 2007
Well, we should be used to the trajectory that this cancer has forced us onto over the last eight months, but we aren't.
Before the gastroscope yesterday, we had two options, one palatable, one not so. Guess which one came up? That's right- the duodenal bypass (as opposed to the resection that we'd been hoping for). So tomorrow afternoon at 2pm, instead of voting for the 27th time ("vote early and often") I'll be lying on the dissecting table being carved up by a surgeon celebrating his 40th birthday and watching the clock to make sure he's home for the cocktail party at 7pm! (tongue is firmly in cheek about the clockwatching thing, of course).
The reason they can't do the resection is that apparently the cancer is heading north up the duodenum, and has involved the bile duct. That's a bugger. There doesn't seem to be any good reason why the cancer should be suddenly so active and aggressive: its just the unpredictable nature of the beast.
Things are a bit flat here in room 339 (phone number 6222 6839) at the moment, but I will try to update the blog between now and the operation. Trust me, I'd rather be out there voting!!
Before the gastroscope yesterday, we had two options, one palatable, one not so. Guess which one came up? That's right- the duodenal bypass (as opposed to the resection that we'd been hoping for). So tomorrow afternoon at 2pm, instead of voting for the 27th time ("vote early and often") I'll be lying on the dissecting table being carved up by a surgeon celebrating his 40th birthday and watching the clock to make sure he's home for the cocktail party at 7pm! (tongue is firmly in cheek about the clockwatching thing, of course).
The reason they can't do the resection is that apparently the cancer is heading north up the duodenum, and has involved the bile duct. That's a bugger. There doesn't seem to be any good reason why the cancer should be suddenly so active and aggressive: its just the unpredictable nature of the beast.
Things are a bit flat here in room 339 (phone number 6222 6839) at the moment, but I will try to update the blog between now and the operation. Trust me, I'd rather be out there voting!!
Wednesday 21 November 2007
Things have gone off the rails a bit.
There's a bit to get through, so bear with me, please.
The results of the PET scan and the CT scans at the end of the chemo were pretty good. If you read through these posts, you'd probably come to the conclusion that I expected something that looked a lot like a cure - that is, the cancer beaten, and skulking off with its nasty little tail between its legs. When the oncologist told us that the CT scan indicated that the lymph nodes were clear, but the PET scan showed that the primary site was (only) severely degraded, we were both disappointed, although Paul told us that this was a very good result. This result meant that I would have to have four-monthly checkups, and when the cancer re-appeared, we would deal with it as best we could.
So far so good, although not as good as we'd hoped.
Then about three weeks ago, I started to have difficulty keeping food down again. Bugger!! So I've been in hospital for the last ten days while the old body has been re-hydrated, various tests are done, and results argued about. But in a nutshell, it appears that the cancer is back (or possibly never went away). It has invaded the stent put in nearly 6 months ago, and appears to marching north along the duodenum. How this was missed on the scans is a matter of some conjecture, but that's really here nor there.
The result is that I will need surgery in the next week or so, depending on the surgeon's NZ fishing trip! It will either be a bypass of the duodenum, or if the cancer hasn't advanced too far towards the bile duct, a resection of the duodenum removing the major site of the cancer. The second option is by far the preferred, although its beginning to look a little distant over the past couple of days. If the resection happens, I'm back to regular checks and handle things as they arise. If its the bypass, then things aren't quite that positive. Either way, at least a couple of weeks in hospital.
I will have another gastroscope on Friday (23rd Nov) to see how far north the cancer has advanced, and therefore how likely the resection is. In the meantime, I'm kicking my heels in a small but private room, gradually rusting up. By that I mean that I'm getting so little exercise that my body is starting to hurt in all sorts of places - its letting me down. The most exercise I get is a couple of laps around the ward. And this won't change until the doctors have a Plan in place. The Plan being, what surgery, and when. Then I can go home and wait. But there's more!!
We sold our house just on a month ago, and settle next Tuesday. So these last two weeks, while I've been resting in hospital Gaye has been readying us for the move to Brisbane. We'll be packed on Thursday, uplifted on Friday, cleaned on Monday, and outa there on Tuesday. Brisbane is still on track, but now the timing has to be a little doubtful because of the surgery. Originally, we had planned to leave Canberra around 20 December - for good. Let's see how it goes.
I have to say as a post script that I'm a bit embarrassed by the way all this has turned out. I haven't re-read the Blog recently, but I do remember that its relentlessly positive and full of good news. And somehow, its all gone skew-whiff.
Now that I have my modem working, I'll try to keep those of you who are still interested up to date.
The results of the PET scan and the CT scans at the end of the chemo were pretty good. If you read through these posts, you'd probably come to the conclusion that I expected something that looked a lot like a cure - that is, the cancer beaten, and skulking off with its nasty little tail between its legs. When the oncologist told us that the CT scan indicated that the lymph nodes were clear, but the PET scan showed that the primary site was (only) severely degraded, we were both disappointed, although Paul told us that this was a very good result. This result meant that I would have to have four-monthly checkups, and when the cancer re-appeared, we would deal with it as best we could.
So far so good, although not as good as we'd hoped.
Then about three weeks ago, I started to have difficulty keeping food down again. Bugger!! So I've been in hospital for the last ten days while the old body has been re-hydrated, various tests are done, and results argued about. But in a nutshell, it appears that the cancer is back (or possibly never went away). It has invaded the stent put in nearly 6 months ago, and appears to marching north along the duodenum. How this was missed on the scans is a matter of some conjecture, but that's really here nor there.
The result is that I will need surgery in the next week or so, depending on the surgeon's NZ fishing trip! It will either be a bypass of the duodenum, or if the cancer hasn't advanced too far towards the bile duct, a resection of the duodenum removing the major site of the cancer. The second option is by far the preferred, although its beginning to look a little distant over the past couple of days. If the resection happens, I'm back to regular checks and handle things as they arise. If its the bypass, then things aren't quite that positive. Either way, at least a couple of weeks in hospital.
I will have another gastroscope on Friday (23rd Nov) to see how far north the cancer has advanced, and therefore how likely the resection is. In the meantime, I'm kicking my heels in a small but private room, gradually rusting up. By that I mean that I'm getting so little exercise that my body is starting to hurt in all sorts of places - its letting me down. The most exercise I get is a couple of laps around the ward. And this won't change until the doctors have a Plan in place. The Plan being, what surgery, and when. Then I can go home and wait. But there's more!!
We sold our house just on a month ago, and settle next Tuesday. So these last two weeks, while I've been resting in hospital Gaye has been readying us for the move to Brisbane. We'll be packed on Thursday, uplifted on Friday, cleaned on Monday, and outa there on Tuesday. Brisbane is still on track, but now the timing has to be a little doubtful because of the surgery. Originally, we had planned to leave Canberra around 20 December - for good. Let's see how it goes.
I have to say as a post script that I'm a bit embarrassed by the way all this has turned out. I haven't re-read the Blog recently, but I do remember that its relentlessly positive and full of good news. And somehow, its all gone skew-whiff.
Now that I have my modem working, I'll try to keep those of you who are still interested up to date.
Sunday 4 November 2007
Second to last post - probably
Down to Sydney (Liverpool, actually) for the PET Scan on Friday. As usual, we drove, against the advice of the technicians at the nuclear medicine facility, who say not to. When I asked them why so time ago, they told me that driving set up tension in the shoulders and neck which could be misinterpreted by the scanner, but that an hour or so of relaxation between scan and driving should take care of that. No more discussion needed, really - driving took place, as did relaxation!
The process was as mildly unpleasant as last time, tinged with the apprehension around the results: last time we knew that I had cancer, this time we need it to say that I don't! The whole process takes around 2 - 2.5 hours: fifteen minutes being prepared (under the space blanket) and ten minutes being injected, an hour for the radio isotope to circulate around the body, 25 minutes for the scan itself, then at least half an hour twiddling the thumbs waiting for the pictures to be validated. Then of course the wait for the results to be given to me by the oncologist, which will be next Friday!
This last wait is very wearing - I am apprehensive about the results, although on balance I reckon that we're ahead of the game. I just don't trust cancer: its an evil, invasive, tricky little bastard of a disease, which seems to go away, then comes back to haunt one. I can't wait to die of old age!!!
More next week.
The process was as mildly unpleasant as last time, tinged with the apprehension around the results: last time we knew that I had cancer, this time we need it to say that I don't! The whole process takes around 2 - 2.5 hours: fifteen minutes being prepared (under the space blanket) and ten minutes being injected, an hour for the radio isotope to circulate around the body, 25 minutes for the scan itself, then at least half an hour twiddling the thumbs waiting for the pictures to be validated. Then of course the wait for the results to be given to me by the oncologist, which will be next Friday!
This last wait is very wearing - I am apprehensive about the results, although on balance I reckon that we're ahead of the game. I just don't trust cancer: its an evil, invasive, tricky little bastard of a disease, which seems to go away, then comes back to haunt one. I can't wait to die of old age!!!
More next week.
Friday 19 October 2007
The beginning of the end!!
D2PC (or, Day 2, post-chemo)
Well, chemo is over. While I still have the hole in my chest, it is no longer attached by a thin tube to a bag of poisonous crap on my hip!! 17 weeks and 6 days with my little "friend", and I'm over it.
I had a CT scan on Monday as part of the restaging of the cancer, and I am happy to report that according to the doctor, I'm cancer free. Of course I will still have a PET scan in Sydney over the next two or three weeks, but the oncologist is confident that we've knocked it on the head. You bloody little beauty! (please note unrestrained joy not possible to convey in writing - just not good enough at it).
When I asked him whether this meant that I was cured, his response was along the lines of: "with cancer, you're never cured until you die of old age". I can live with that.
Another appointment in a month to (a) have my portacath flushed out, and (b) to ask him the hard questions about how we are going to monitor things to ensure that - should the cancer recur - it doesn't become as advanced as this time before we discover it. Or maybe my new reality is that I will live on tenterhooks around this for the rest of what will be hopefully (and I hate using that word) be along and fruitful life.
In the meantime, life continues on. I am feeling better by the day, although this morning while out on my walk with Oskar the Dog I tried to jog a couple of times and knocked up very quickly - and I'm paying for it now. Paul Craft says I should be back to a very unfit "normal" in one to two weeks. Can't wait. Although I went for a long bike ride with my sensei yesterday and held up okay - a 1200cc engine will do that, tho.
There are some learnings from all this which I intend to out down at some time in the not too distant future. The most obvious is that Cancer is not necessarily a death sentence, although everything we "know" as a society tells us it is, and we certainly respond in that way when told we have it. Another is that there is very big industry out there flogging quack cures and approaches. The give-away to these is, appropriately, that they don't give them away - you have to buy them. Warning: NEVER buy a book which details the unique approach to survival of a wholesome young cancer sufferer. Wait till you can pick it up from the estate of some other idiot who bought it, tried (or didn't) the "cure" and died. And don't get sucked in. Also, do your research: type cancer quackery into Google, and read the discrediting of most of the popular approaches, from the Gersson diet approach to the power of positive thinking as espoused by the very expensive Ian Gawler.
That's enough for now. More later.
Yeayyy!!
Well, chemo is over. While I still have the hole in my chest, it is no longer attached by a thin tube to a bag of poisonous crap on my hip!! 17 weeks and 6 days with my little "friend", and I'm over it.
I had a CT scan on Monday as part of the restaging of the cancer, and I am happy to report that according to the doctor, I'm cancer free. Of course I will still have a PET scan in Sydney over the next two or three weeks, but the oncologist is confident that we've knocked it on the head. You bloody little beauty! (please note unrestrained joy not possible to convey in writing - just not good enough at it).
When I asked him whether this meant that I was cured, his response was along the lines of: "with cancer, you're never cured until you die of old age". I can live with that.
Another appointment in a month to (a) have my portacath flushed out, and (b) to ask him the hard questions about how we are going to monitor things to ensure that - should the cancer recur - it doesn't become as advanced as this time before we discover it. Or maybe my new reality is that I will live on tenterhooks around this for the rest of what will be hopefully (and I hate using that word) be along and fruitful life.
In the meantime, life continues on. I am feeling better by the day, although this morning while out on my walk with Oskar the Dog I tried to jog a couple of times and knocked up very quickly - and I'm paying for it now. Paul Craft says I should be back to a very unfit "normal" in one to two weeks. Can't wait. Although I went for a long bike ride with my sensei yesterday and held up okay - a 1200cc engine will do that, tho.
There are some learnings from all this which I intend to out down at some time in the not too distant future. The most obvious is that Cancer is not necessarily a death sentence, although everything we "know" as a society tells us it is, and we certainly respond in that way when told we have it. Another is that there is very big industry out there flogging quack cures and approaches. The give-away to these is, appropriately, that they don't give them away - you have to buy them. Warning: NEVER buy a book which details the unique approach to survival of a wholesome young cancer sufferer. Wait till you can pick it up from the estate of some other idiot who bought it, tried (or didn't) the "cure" and died. And don't get sucked in. Also, do your research: type cancer quackery into Google, and read the discrediting of most of the popular approaches, from the Gersson diet approach to the power of positive thinking as espoused by the very expensive Ian Gawler.
That's enough for now. More later.
Yeayyy!!
Wednesday 10 October 2007
Getting close to the end, now..............
Once again, weeks have passed since last time I posted but not a lot has happened, although chemo moves inexorably on. I am now just one pump change and eight days from formally ending chemo. Today, then, is C6D13.
The last couple of weeks have not been particularly kind, as each major hit has impacted me a little more severely, and for a longer time. As an example, in the early days I used to be back to "normal" by about Tuesday after the big hit, but the last two have hung on longer, until this time its been just the last day or so that I've felt in the slightest bit "normal", and even then things are pretty relative! I've also noticed additional side effects as the process has matured, such as chest and arm pain, some shortness of breath after the tiniest exertion, some minor ear-ringing, a little facial numbness and an ongoing low grade headache. And of course the mucousitis which I wrote about last time. But compared to others I see in my weekly visits to the hospital, I'd rather be me (at least in the short-term!!).
Over the next couple of weeks, the plan is to restage the tumour/cancer. Next week sometime I'll organise a CT scan, then I'll have a biopsy on the cancer site by the gastro-intestinal guy (Thommo, remember?) and go down to Sydney for another PET scan. This last will have to wait a couple of weeks, as apparently the chemo interferes with the readings and throws up false positives - wouldn't want any of those, now, would we?!
One odd thing that I've noticed lately is that cancer and other serious illnesses are everywhere amongst my near contemporaries. One friend and close colleague has developed a nasty bowel condition over the past couple of months (diverticulitis?); another had a nasty and potentially fatal twisted intestine, while a third announced yesterday that he has aggressive prostate cancer and his future is uncertain. What is happening to the world?
And to add to the stress levels, the house is on the market prior to our shift later this year to Queensland. For those who are interested, we're no the web at allhomes.com.au at 32 Hawkesbury Crescent in Farrer ACT. Lots of photos which do the house absolute justice! The problem is that we're on exhibition twice a week for three weeks, and I am under extreme pressure to keep the house tidy. Not easy for a little grot like me! Luckily my real area of responsibility is the garden out the back, and given that we've deliberately designed it to be easy care, then its ............. easy.
I'll post next after the restaging process, with news about the future.
The last couple of weeks have not been particularly kind, as each major hit has impacted me a little more severely, and for a longer time. As an example, in the early days I used to be back to "normal" by about Tuesday after the big hit, but the last two have hung on longer, until this time its been just the last day or so that I've felt in the slightest bit "normal", and even then things are pretty relative! I've also noticed additional side effects as the process has matured, such as chest and arm pain, some shortness of breath after the tiniest exertion, some minor ear-ringing, a little facial numbness and an ongoing low grade headache. And of course the mucousitis which I wrote about last time. But compared to others I see in my weekly visits to the hospital, I'd rather be me (at least in the short-term!!).
Over the next couple of weeks, the plan is to restage the tumour/cancer. Next week sometime I'll organise a CT scan, then I'll have a biopsy on the cancer site by the gastro-intestinal guy (Thommo, remember?) and go down to Sydney for another PET scan. This last will have to wait a couple of weeks, as apparently the chemo interferes with the readings and throws up false positives - wouldn't want any of those, now, would we?!
One odd thing that I've noticed lately is that cancer and other serious illnesses are everywhere amongst my near contemporaries. One friend and close colleague has developed a nasty bowel condition over the past couple of months (diverticulitis?); another had a nasty and potentially fatal twisted intestine, while a third announced yesterday that he has aggressive prostate cancer and his future is uncertain. What is happening to the world?
And to add to the stress levels, the house is on the market prior to our shift later this year to Queensland. For those who are interested, we're no the web at allhomes.com.au at 32 Hawkesbury Crescent in Farrer ACT. Lots of photos which do the house absolute justice! The problem is that we're on exhibition twice a week for three weeks, and I am under extreme pressure to keep the house tidy. Not easy for a little grot like me! Luckily my real area of responsibility is the garden out the back, and given that we've deliberately designed it to be easy care, then its ............. easy.
I'll post next after the restaging process, with news about the future.
Tuesday 25 September 2007
Its been a while
Its been so long since I put anything up, that I wouldn't be surprised if no one is still reading. Sorry.
Okay, to catch up. When last you visited, I had just been told that the tumour seemed to have vanished, a most unusual result for such an easy time in the chemo cycle. Since then, the chemo has just been a chore - something to be tolerated, rather than a positive force for good!! So I have just settled into a routine. Interestingly, the impact of the chemo has been a little worse each time - the effects are clearly cumulative. I feel like crap for a little longer after each "big hit" (next one this Thursday) with symptoms of nausea and an urge to vomit (unresolved, fortunately). Then feeling pretty low for now more than an additional week at a time, followed by another week in which I just feel very ordinary. Hmmmm.
The other big bit of news is that I had to be taken off the 5FU last Friday, just one day into it. Apparently, my bloods were marginal on Wednesday. On Thursday afternoon the left side of my face blew up like a watermelon: its called mucousitis, or inflammation of the mucous membranes in the mouth. Its been pretty ordinary until yesterday, when it started to go down. Today, back to 95% normal. Added to that is the mild dose of conjunctivitis I've had (unrelated, I think) and a constantly dripping nose, and its an attractive picture!!! Bloods again tomorrow: here's hoping they're back to normal, and the "big hit" goes ahead as scheduled on Thursday.
One thing I've decided to do is to take sick leave for the duration of the chemo. As I've been justifying it, I haven't been completing or achieving much lately, and I feel that I've been letting people down. Now at least, they won 't have any expectations of me, so it will be difficult to let them down. Having made the decision, my stress levels dived! Having said that, I went down to Melbourne overnight for a presentation at a Defence conference today. Did I mention that I get tired easily? Any real or sustained effort knocks me pretty flat.
Added to all that is that we're preparing the house for sale (it goes on the market on 6 October, auction on 27 October). So I really have been as useless as the proverbials on a bull! Much thanks to family and friends for covering for me, and being so pleasant as they "carry" me through the whole clean up and clear away process.
"Dancing with the Stars" is nearing its end tonight, so time to finish up. I'm back into this, so over the next month, I want to chat about some of the impacts of this whole thing - on me and others. I will be discussing spirituality, positivity, quackery, and why I've decided not to do the Ian Gawler thing. Things could get ugly, but you have been warned.
Oh, and one other thing. The two favourite speakers at last year's EXPAND conference (Michael Milton and me) have gone down with cancer. Does this mean that working with EAs is dangerous?
Okay, to catch up. When last you visited, I had just been told that the tumour seemed to have vanished, a most unusual result for such an easy time in the chemo cycle. Since then, the chemo has just been a chore - something to be tolerated, rather than a positive force for good!! So I have just settled into a routine. Interestingly, the impact of the chemo has been a little worse each time - the effects are clearly cumulative. I feel like crap for a little longer after each "big hit" (next one this Thursday) with symptoms of nausea and an urge to vomit (unresolved, fortunately). Then feeling pretty low for now more than an additional week at a time, followed by another week in which I just feel very ordinary. Hmmmm.
The other big bit of news is that I had to be taken off the 5FU last Friday, just one day into it. Apparently, my bloods were marginal on Wednesday. On Thursday afternoon the left side of my face blew up like a watermelon: its called mucousitis, or inflammation of the mucous membranes in the mouth. Its been pretty ordinary until yesterday, when it started to go down. Today, back to 95% normal. Added to that is the mild dose of conjunctivitis I've had (unrelated, I think) and a constantly dripping nose, and its an attractive picture!!! Bloods again tomorrow: here's hoping they're back to normal, and the "big hit" goes ahead as scheduled on Thursday.
One thing I've decided to do is to take sick leave for the duration of the chemo. As I've been justifying it, I haven't been completing or achieving much lately, and I feel that I've been letting people down. Now at least, they won 't have any expectations of me, so it will be difficult to let them down. Having made the decision, my stress levels dived! Having said that, I went down to Melbourne overnight for a presentation at a Defence conference today. Did I mention that I get tired easily? Any real or sustained effort knocks me pretty flat.
Added to all that is that we're preparing the house for sale (it goes on the market on 6 October, auction on 27 October). So I really have been as useless as the proverbials on a bull! Much thanks to family and friends for covering for me, and being so pleasant as they "carry" me through the whole clean up and clear away process.
"Dancing with the Stars" is nearing its end tonight, so time to finish up. I'm back into this, so over the next month, I want to chat about some of the impacts of this whole thing - on me and others. I will be discussing spirituality, positivity, quackery, and why I've decided not to do the Ian Gawler thing. Things could get ugly, but you have been warned.
Oh, and one other thing. The two favourite speakers at last year's EXPAND conference (Michael Milton and me) have gone down with cancer. Does this mean that working with EAs is dangerous?
Thursday 16 August 2007
A bit too subtle for some?
It appears that yesterday's entry was not quite clear enough for some: I have been inundated with calls (well, two) asking what the hell I meant! So (heavy sigh.....................)
Yesterday I went to the oncologist to get the results of my mid-term chemo scans. After the usual social chit-chat, he told me that the scans showed no sign of the cancer, and that the infected lymph nodes had returned to normal. After we (Gaye and I) scraped ourselves off the ceiling, he went on to tell us that I should continue the chemo to ensure that every skerrick of nastiness is removed from the rather dilapidated temple that is my body.
I liken it to a game of footy. At half time you're ahead 50 nil, but the coach tells you not to let up, but to go out and put another 60 or 70 points on the opposition to ensure that they never trouble you again!
Chemo does not result in cures, but remissions. If I want to be absolutely certain the little sucker never returns, the surgeons will have to decide in about three months that I'm operable - something they've resisted in the past. If I continue without surgery, it is possible, but by no means certain, that the cancer will return at some unspecified time in the future. But because its a slow growing, relatively non-aggressive form of cancer, it should never become as dangerous as it was this time - we should be able to stop it before it does real damage with close monitoring. This time it got to stage 4 before we noticed it.
Clear enough?
Yesterday I went to the oncologist to get the results of my mid-term chemo scans. After the usual social chit-chat, he told me that the scans showed no sign of the cancer, and that the infected lymph nodes had returned to normal. After we (Gaye and I) scraped ourselves off the ceiling, he went on to tell us that I should continue the chemo to ensure that every skerrick of nastiness is removed from the rather dilapidated temple that is my body.
I liken it to a game of footy. At half time you're ahead 50 nil, but the coach tells you not to let up, but to go out and put another 60 or 70 points on the opposition to ensure that they never trouble you again!
Chemo does not result in cures, but remissions. If I want to be absolutely certain the little sucker never returns, the surgeons will have to decide in about three months that I'm operable - something they've resisted in the past. If I continue without surgery, it is possible, but by no means certain, that the cancer will return at some unspecified time in the future. But because its a slow growing, relatively non-aggressive form of cancer, it should never become as dangerous as it was this time - we should be able to stop it before it does real damage with close monitoring. This time it got to stage 4 before we noticed it.
Clear enough?
Wednesday 15 August 2007
Mid-term Report Card
Dear Mrs D'Arcy
I am happy to be writing this mid-term report for young Anthony.
When Anthony (some here call him Tony) arrived here just four months ago now, he was faced with the challenge of a new environment, the need to make new friends, and to complete a new and difficult curriculum.
When he first started, he was filled with enthusiasm and good intentions, and presented as a high-spirited lad with honourable aspirations. He worked hard initially, and quickly settled into a routine of work, study and exercise. He also fitted in well, and made many friends who continue to support him well.
If I have one criticism of his approach at this stage, it would be that perhaps he took advice from many different sources when he first started, perhaps promised a bit too much to himself and those around him, based upon somewhat dubious and non-scientific sources? He needs to watch this as he continues on.
After his initial enthusiasm, I have to say that he slowed down somewhat in the middle stages. He will tell you that it had to do with a lingering cold, a dripping nose and a sore chest and shoulder, but in my opinion it is symptomatic of a possible longer term problem with his approach to life generally: he may not be a finisher. You will need to watch this in him, and reinforce in him the need to complete what he sets out to achieve!
I am pleased to tell you, however, that he has passed his mid-term examination with flying colours - sometimes sheer talent and ability can make up for a lack of application (this may seem unfair to some, but it is the way of the world). This morning, as I was marking his paper, I was amazed at the progress he has made. There is no sign of the peripheral difficulties he had when he came, and the central problem that he demonstrated has dissipated to such a degree that I am pleased to advise that it is on the run. When I discussed his progress with his football coach, he suggested that it was "a little like leading 50 nil at half time: you know you've got them beaten, but you want another 50 points in the second half to be sure!" I agree with this assessment. I am also confident that the opposition is in a sorry state after the first half whacking they received, and are unlikely to present much resistance in the foreseeable future!
During the next period, I expect Anthony to put in the same amount of work as he has in the last three months. He will need to spend another nine weeks at hard study, and while at times this may seem unnecessary, I am sure that if he sticks to it in good spirit he will continue to reap the results he wants. I know that his success in the first part of the term will buoy him mightily as he progresses.
He mentioned to me that he had made plans to move to another cricket team later in the year, but that his need to attend this school meant that he had to continue to play here. I would strongly advise that he re-activate those plans: there is no reason for him to stay and suffer in our cold when the sub-tropics beckon so hard. Can I suggest that January would be a good time for him to make the move? I can see him in maroon.
In the meantime, we wish him luck for the future, especially the next few months. I have no doubt that the rigours of this place will continue to test him, but the end is in sight, and a fine end it is too!!
Yours sincerely
O. N. Cologist
(Head of School)
I am happy to be writing this mid-term report for young Anthony.
When Anthony (some here call him Tony) arrived here just four months ago now, he was faced with the challenge of a new environment, the need to make new friends, and to complete a new and difficult curriculum.
When he first started, he was filled with enthusiasm and good intentions, and presented as a high-spirited lad with honourable aspirations. He worked hard initially, and quickly settled into a routine of work, study and exercise. He also fitted in well, and made many friends who continue to support him well.
If I have one criticism of his approach at this stage, it would be that perhaps he took advice from many different sources when he first started, perhaps promised a bit too much to himself and those around him, based upon somewhat dubious and non-scientific sources? He needs to watch this as he continues on.
After his initial enthusiasm, I have to say that he slowed down somewhat in the middle stages. He will tell you that it had to do with a lingering cold, a dripping nose and a sore chest and shoulder, but in my opinion it is symptomatic of a possible longer term problem with his approach to life generally: he may not be a finisher. You will need to watch this in him, and reinforce in him the need to complete what he sets out to achieve!
I am pleased to tell you, however, that he has passed his mid-term examination with flying colours - sometimes sheer talent and ability can make up for a lack of application (this may seem unfair to some, but it is the way of the world). This morning, as I was marking his paper, I was amazed at the progress he has made. There is no sign of the peripheral difficulties he had when he came, and the central problem that he demonstrated has dissipated to such a degree that I am pleased to advise that it is on the run. When I discussed his progress with his football coach, he suggested that it was "a little like leading 50 nil at half time: you know you've got them beaten, but you want another 50 points in the second half to be sure!" I agree with this assessment. I am also confident that the opposition is in a sorry state after the first half whacking they received, and are unlikely to present much resistance in the foreseeable future!
During the next period, I expect Anthony to put in the same amount of work as he has in the last three months. He will need to spend another nine weeks at hard study, and while at times this may seem unnecessary, I am sure that if he sticks to it in good spirit he will continue to reap the results he wants. I know that his success in the first part of the term will buoy him mightily as he progresses.
He mentioned to me that he had made plans to move to another cricket team later in the year, but that his need to attend this school meant that he had to continue to play here. I would strongly advise that he re-activate those plans: there is no reason for him to stay and suffer in our cold when the sub-tropics beckon so hard. Can I suggest that January would be a good time for him to make the move? I can see him in maroon.
In the meantime, we wish him luck for the future, especially the next few months. I have no doubt that the rigours of this place will continue to test him, but the end is in sight, and a fine end it is too!!
Yours sincerely
O. N. Cologist
(Head of School)
Thursday 9 August 2007
Its Gorn - C3D15
Well, its happened - hair's gone. It happened like this.
On the weekend, Gaye and I went down to Kangaroo Valley (just inland and south of Wollongong, for the geographically challenged). We hadn't really been out of Canberra since the dreaded Black Friday, so we were up for it! We stayed at a top-notch B&B for three nights from Friday, and mosied up to Sydney on Monday, for a Tuesday meaning. We had a sublime weekend. Except for Saturday AM!
I have always said that when people started to notice the state of my hair, it was coming off. On Saturday morning we went into Berry looking for some Voltaren or similar for a painful shoulder. The chemist asked me whether I was on any drugs, and when I told her "a bucketload!", she looked at me then asked: "How far into the process are you? Chemo I mean." How could she tell, I asked - "your hair, of course - its typical of chemo patients. I bought the Voltaren, went around the corner to a little hair dressing salon, and 3 minutes and $15 later walked out a changed man.
But here's the thing - I have a really good head for it! And I want to know why brother Tim didn't tell me about the freedom that total baldness endows. I really enjoy it, as long as I don't catch an unexpected glimpse of myself in a mirror, or shop window reflection. I have bought, as promised, a snappy black fedora to accessorise the black overcoat. In the vernacular of the day, I look sick!!
But enough about me, and on to other things. On Monday next week I have the mid-process scan, as mentioned in the last post. Things haven't gone quite as expected in the last couple of weeks, with me having some odd chest and shoulder pain which has been affecting my sleep, and therefore my generally cheery good mood. Hence the Voltaren last weekend. I also have a little soreness in my neck/throat which is worrying me just a wee bit. In any case, if it gets any worse, its either mumps or Flu, rather than anything to do with the C.
More next week - you'll be among the first to know.
Oh, and I will post a photo in the next day or so, with and without hat!!
On the weekend, Gaye and I went down to Kangaroo Valley (just inland and south of Wollongong, for the geographically challenged). We hadn't really been out of Canberra since the dreaded Black Friday, so we were up for it! We stayed at a top-notch B&B for three nights from Friday, and mosied up to Sydney on Monday, for a Tuesday meaning. We had a sublime weekend. Except for Saturday AM!
I have always said that when people started to notice the state of my hair, it was coming off. On Saturday morning we went into Berry looking for some Voltaren or similar for a painful shoulder. The chemist asked me whether I was on any drugs, and when I told her "a bucketload!", she looked at me then asked: "How far into the process are you? Chemo I mean." How could she tell, I asked - "your hair, of course - its typical of chemo patients. I bought the Voltaren, went around the corner to a little hair dressing salon, and 3 minutes and $15 later walked out a changed man.
But here's the thing - I have a really good head for it! And I want to know why brother Tim didn't tell me about the freedom that total baldness endows. I really enjoy it, as long as I don't catch an unexpected glimpse of myself in a mirror, or shop window reflection. I have bought, as promised, a snappy black fedora to accessorise the black overcoat. In the vernacular of the day, I look sick!!
But enough about me, and on to other things. On Monday next week I have the mid-process scan, as mentioned in the last post. Things haven't gone quite as expected in the last couple of weeks, with me having some odd chest and shoulder pain which has been affecting my sleep, and therefore my generally cheery good mood. Hence the Voltaren last weekend. I also have a little soreness in my neck/throat which is worrying me just a wee bit. In any case, if it gets any worse, its either mumps or Flu, rather than anything to do with the C.
More next week - you'll be among the first to know.
Oh, and I will post a photo in the next day or so, with and without hat!!
Monday 30 July 2007
C3D5
Sitting at home, watching TV and feeling just a little sorry for myself. Today (Monday) I've spent the day at home, with a pretty severe headache. Didn't move most of the day, and spent a decent amount of it asleep. A pity, really, as the weekend was a pretty good one, although Thursday and Friday were extremely ordinary. Back-tracking..........
Cycle 3 started on Thursday, and went very smoothly. I'd had a meeting with the oncologist on Wednesday, and he'd taken me through the process from here. I will have a CT scan in Canberra today fortnight. By then, half way through the treatment, the cancer should be showing one of two situations: either unchanged or worse, in which case we need to vary the treatment, or showing signs of improvement, in which case we consider what to do next - positively!! I'm feeling very confident - and quietly, so is the oncologist.
Thursday afternoon and Friday I was as ordinary as I've been. Very lethargic, easily tired and very fuzzy in the head. The anti-nausea drugs seemed to be working overtime, with me doing lots of heavy gulping hoping nothing else eventuated! Then on Saturday and Sunday, I felt pretty well, and we did a fair amount, including visiting WhiteHart Vineyard and going for a couple of walks. Then Harry Potter in the comfort of Dendy Premium (the only cinema which gives FF points!). Great movie and a very presentable pizza delivered directly to the Jason Recliner!! Fantastic!
Today, average and very dusty. This evening, tho, a little better. Top Gear cheered me right up!!
Oh and the hair? So far, its hanging in there: wispier than before, but sort of cute - or at least thats' what Gaye says, and she wouldn't lie to me!! THe girls in the clinic expect me to be nude-nutted each time they see me. Bad luck, kids.
Cycle 3 started on Thursday, and went very smoothly. I'd had a meeting with the oncologist on Wednesday, and he'd taken me through the process from here. I will have a CT scan in Canberra today fortnight. By then, half way through the treatment, the cancer should be showing one of two situations: either unchanged or worse, in which case we need to vary the treatment, or showing signs of improvement, in which case we consider what to do next - positively!! I'm feeling very confident - and quietly, so is the oncologist.
Thursday afternoon and Friday I was as ordinary as I've been. Very lethargic, easily tired and very fuzzy in the head. The anti-nausea drugs seemed to be working overtime, with me doing lots of heavy gulping hoping nothing else eventuated! Then on Saturday and Sunday, I felt pretty well, and we did a fair amount, including visiting WhiteHart Vineyard and going for a couple of walks. Then Harry Potter in the comfort of Dendy Premium (the only cinema which gives FF points!). Great movie and a very presentable pizza delivered directly to the Jason Recliner!! Fantastic!
Today, average and very dusty. This evening, tho, a little better. Top Gear cheered me right up!!
Oh and the hair? So far, its hanging in there: wispier than before, but sort of cute - or at least thats' what Gaye says, and she wouldn't lie to me!! THe girls in the clinic expect me to be nude-nutted each time they see me. Bad luck, kids.
Friday 20 July 2007
A Quick Update
C2D16. Another week has passed, and apart from the fact that I can't shake a cold that I've now had for nearly two weeks, everything is going fine.
The hair situation has stabilised, and while I am very,very wispy, I am hanging on to a little. And if you caught me in a good light, you might think I was merely balding badly. I am assured by a couple of nurses, and one of my favourite naysayers, that I will be egg-like after the next major jolt - next Thursday. Thanks guys. Some have suggested a wig, others the currently fashionable tight gangsta beanie, and my in-laws a pom-pom topped hand-knitted number. I'm thinkin' snap-brimmed black fedora. Definitely more my style. I'll post photos.
I go in for the the first of Cycle 3 on Thursday next week. After the completion of this cycle - i.e. in just over three weeks from now, down to Sydney for a mid-treatment PET scan to see what's happening with the little sucker.
I don't really want to harp on it, but I am actually being treated very kindly by this process, and I'm reminded of it every time I go into the clinic (remember, twice a week for blood test and pump change). Most of those I meet are pretty debilitated by their treatment, and more than a couple look like death warmed up! My four days of crap after each jolt seems like a bonus! Not that I'm complaining, mind you!!
I suspect that the next treatment will affect me a little more heavily, there seems to be a slight accumulative affect.
Since I last blogged, Michael Milton, well known disabled down-hill skiing hero, has announced that he has an aggressive cancer in his oesophagus. Given his progress since losing his leg to bone cancer when he was eight or nine, this would be the last thing he would have expected. Michael and I both addressed a conference in Canberra in November last year. I sincerely hope we're not establishing a cancer cluster for the attendees! I wish him every bit of luck that I hope to have. (Incidentally, Michael got paid a shitload of money for his short speech, while I donated my much more amusing and better-received two hour workshop. Not that I'm bitter!).
The hair situation has stabilised, and while I am very,very wispy, I am hanging on to a little. And if you caught me in a good light, you might think I was merely balding badly. I am assured by a couple of nurses, and one of my favourite naysayers, that I will be egg-like after the next major jolt - next Thursday. Thanks guys. Some have suggested a wig, others the currently fashionable tight gangsta beanie, and my in-laws a pom-pom topped hand-knitted number. I'm thinkin' snap-brimmed black fedora. Definitely more my style. I'll post photos.
I go in for the the first of Cycle 3 on Thursday next week. After the completion of this cycle - i.e. in just over three weeks from now, down to Sydney for a mid-treatment PET scan to see what's happening with the little sucker.
I don't really want to harp on it, but I am actually being treated very kindly by this process, and I'm reminded of it every time I go into the clinic (remember, twice a week for blood test and pump change). Most of those I meet are pretty debilitated by their treatment, and more than a couple look like death warmed up! My four days of crap after each jolt seems like a bonus! Not that I'm complaining, mind you!!
I suspect that the next treatment will affect me a little more heavily, there seems to be a slight accumulative affect.
Since I last blogged, Michael Milton, well known disabled down-hill skiing hero, has announced that he has an aggressive cancer in his oesophagus. Given his progress since losing his leg to bone cancer when he was eight or nine, this would be the last thing he would have expected. Michael and I both addressed a conference in Canberra in November last year. I sincerely hope we're not establishing a cancer cluster for the attendees! I wish him every bit of luck that I hope to have. (Incidentally, Michael got paid a shitload of money for his short speech, while I donated my much more amusing and better-received two hour workshop. Not that I'm bitter!).
Wednesday 11 July 2007
From the desk of Tony the Balding (really rapidly)
A number of people have commented that I'm now experiencing what they've been going through for years. Yep, I can see where they're coming from, but I have to say that what has taken some of you 35 years to achieve, i.e. an almost totally nude skull, I have had done to me in something less than a week!
And here's the thing - chemo is a bully. It picks off the crowning glory stuff with a laugh and a leer, and doesn't even touch the socially undesirable stuff that normally you'd pay others to take care of. What I mean is, the head hair generally is extremely wispy, but the little clumps in the ears and nose? Still rampant!
But I'm sort of persisting with it at the moment, despite initially thinking that I'd whip it all off at the first sign of thinning. I'm now going to see how bad it looks before I go that path.
In other news, last Thursday was Cycle2, Day1: today is therefore C2D7. Reaction for the four days after about the same as last time, perhaps a little worse - maybe there's something in this accumulation effect they promised me. And I've picked up a nasty head cold. When I had my blood test this morning, they told me it would be okay as long as it didn't get to my chest, in which case they might have to stop the treatment. No way that's going to happen!
Ran into an old work colleague last week who also has cancer. He's been down the Gawler Institute route, and follows the protocols pretty strictly, including two hours of meditation a day. Even Ian Gawler was apparently impressed by his positivity.
Mum's 93rd birthday on Sunday last, and the clan gathered to celebrate. 40-odd of us, with four generations and around a dozen great grandchildren. A terrific gathering, and lovely for me to see and catch up with all the nieces and nephews apart from those in Japan and England, and Townsville.
I'm being careful at work, sticking solidly to my comfort zone, and not taking on anything that will unduly stress me. Seems sensible.
Paul Craft (oncologist) and I have decided that I will have another PET scan after Cycle 3 to assess the progress of the chemo. I can feel in my bones that it will be a positive result (in that the cancer will be much reduced, of course). If that's the case, Brisbane plans are back on track - house on the market in September/October, with a move into the Brisbane house in mid-January 2008.
And here's the thing - chemo is a bully. It picks off the crowning glory stuff with a laugh and a leer, and doesn't even touch the socially undesirable stuff that normally you'd pay others to take care of. What I mean is, the head hair generally is extremely wispy, but the little clumps in the ears and nose? Still rampant!
But I'm sort of persisting with it at the moment, despite initially thinking that I'd whip it all off at the first sign of thinning. I'm now going to see how bad it looks before I go that path.
In other news, last Thursday was Cycle2, Day1: today is therefore C2D7. Reaction for the four days after about the same as last time, perhaps a little worse - maybe there's something in this accumulation effect they promised me. And I've picked up a nasty head cold. When I had my blood test this morning, they told me it would be okay as long as it didn't get to my chest, in which case they might have to stop the treatment. No way that's going to happen!
Ran into an old work colleague last week who also has cancer. He's been down the Gawler Institute route, and follows the protocols pretty strictly, including two hours of meditation a day. Even Ian Gawler was apparently impressed by his positivity.
Mum's 93rd birthday on Sunday last, and the clan gathered to celebrate. 40-odd of us, with four generations and around a dozen great grandchildren. A terrific gathering, and lovely for me to see and catch up with all the nieces and nephews apart from those in Japan and England, and Townsville.
I'm being careful at work, sticking solidly to my comfort zone, and not taking on anything that will unduly stress me. Seems sensible.
Paul Craft (oncologist) and I have decided that I will have another PET scan after Cycle 3 to assess the progress of the chemo. I can feel in my bones that it will be a positive result (in that the cancer will be much reduced, of course). If that's the case, Brisbane plans are back on track - house on the market in September/October, with a move into the Brisbane house in mid-January 2008.
Tuesday 3 July 2007
Gone today!!
I spoke too bloody soon! After the walk/run with Oscar the Dog this morning, found clumps of hair in the beanie, then more in the shower (sob!). Bugger. I'm wondering how I can slip this past the girls in the clinic tomorrow - of course by Thursday it'll be too obvious.
So mark this day down: C1D20 - hair starts to disappear!!
So mark this day down: C1D20 - hair starts to disappear!!
Monday 2 July 2007
Hair today............
Just a short update before I go into the second cycle of chemo.
So far, the past three weeks have been very kind to me. With the exception of the first weekend after C1D1, I have been really well, with no real side effects worth commenting on - although to be fair I imagined that I have had all of the possible symptoms for at least one minute each.
And the thing is that I still have my hair! The nurses in the clinic were very emphatic on this: "you will lose your hair!" and their best guess was C1D12-D14. Here we are at C1D19, and no clumps of bottle blond on the pillow in the morning, no excess hair in the hair brush, no hair clogging the drain after the morning shower. Ha! I'll show them! I refuse to bow to traditional chemo reaction. I will NOT lose my hair! And if I do, I'm going to keep my eyebrows.
A small crisis on Saturday, when one of the clamps in the line between the chemo bottle and the hole in my chest came slightly undone, allowing blood and mixed-in chemo to seep through onto my T-shirt and jumper. Problem was, we were at the shopping centre, so it was all a bit obvious. We raced me off to the ER at Canberra Hospital, where they re-attached things, put in a new port, and chucked my clothing into a toxic waste bucket (they're purple!). Bloody hell, that's what I've got coursing through my veins, and its too dangerous to touch? That was an interesting touch.
Oh, and I tried out the compatibility of my chemo pump with airport security checks last week too. The rent-a-cop security types didn't like it, and asked obvious questions, like: " Would you take that off and put it through the x-ray machine, please Sir?" But when they eventually got the idea, they just went over me with a fine-toothed comb (the metal detecting wand, actually). It only took a few minutes, and then I was on my way. I am guessing, tho, that I would need a note from my mother if I was intending to fly internationally - the bottle holds more than 100mls! And I bet I wouldn't get into the States at all. hooked up like I am now. Happy to be proven wrong of course ....
I had a lovely email last week from a stranger who was referred to the blog by a friend (who I also didn't know) who thought she might find it useful in her particular circumstances. She did, and let me know. It made my day. Feel free to pass the address on to anybody you think might be interested or find it useful.
And I am back at work full time, and have been for around six weeks. I've missed a couple of Sydney meetings, but otherwise am fully engaged back in the business of PEPworldwide. I've stepped aside from the top job into a role responsible for marketing and communication.
So far, the past three weeks have been very kind to me. With the exception of the first weekend after C1D1, I have been really well, with no real side effects worth commenting on - although to be fair I imagined that I have had all of the possible symptoms for at least one minute each.
And the thing is that I still have my hair! The nurses in the clinic were very emphatic on this: "you will lose your hair!" and their best guess was C1D12-D14. Here we are at C1D19, and no clumps of bottle blond on the pillow in the morning, no excess hair in the hair brush, no hair clogging the drain after the morning shower. Ha! I'll show them! I refuse to bow to traditional chemo reaction. I will NOT lose my hair! And if I do, I'm going to keep my eyebrows.
A small crisis on Saturday, when one of the clamps in the line between the chemo bottle and the hole in my chest came slightly undone, allowing blood and mixed-in chemo to seep through onto my T-shirt and jumper. Problem was, we were at the shopping centre, so it was all a bit obvious. We raced me off to the ER at Canberra Hospital, where they re-attached things, put in a new port, and chucked my clothing into a toxic waste bucket (they're purple!). Bloody hell, that's what I've got coursing through my veins, and its too dangerous to touch? That was an interesting touch.
Oh, and I tried out the compatibility of my chemo pump with airport security checks last week too. The rent-a-cop security types didn't like it, and asked obvious questions, like: " Would you take that off and put it through the x-ray machine, please Sir?" But when they eventually got the idea, they just went over me with a fine-toothed comb (the metal detecting wand, actually). It only took a few minutes, and then I was on my way. I am guessing, tho, that I would need a note from my mother if I was intending to fly internationally - the bottle holds more than 100mls! And I bet I wouldn't get into the States at all. hooked up like I am now. Happy to be proven wrong of course ....
I had a lovely email last week from a stranger who was referred to the blog by a friend (who I also didn't know) who thought she might find it useful in her particular circumstances. She did, and let me know. It made my day. Feel free to pass the address on to anybody you think might be interested or find it useful.
And I am back at work full time, and have been for around six weeks. I've missed a couple of Sydney meetings, but otherwise am fully engaged back in the business of PEPworldwide. I've stepped aside from the top job into a role responsible for marketing and communication.
Sunday 24 June 2007
Chemo so far
I had never intended that this Blog become a day-by-day, blow-by-blow account of my battle with cancer.
One reality that has become pretty apparent pretty quickly, is that this is much more a war of attrition than anything else. The chemo is a slow, laborious process that might (slightly better than 50% chance) result in victory - but we won't really know anything for at least another four months.
After just over week on chemo, what do I know? I know that the weekend after a Day One will be bearably unpleasant (maybe 6.5/10 on my personal wellness scale?). I know that if this last week and a half is anything to go by, my fears about chemo are pretty much unfounded. Each day since last Monday I've felt better, until the last two days I would rate myself as 9/10 - and frankly, I need artificial stimulants these days to feel much beter than that in the normal course of things. I know that I will lose my hair sometime next week, but I'm not in the slightest bit concerned about that. I know that just because I've had few in the way of side affects that it won't necessarily be like that for each cycle.
And what do I think? I think I'm going to be relatively unaffected by the chemo, based upon my experiences so far. I think that I'll get used to the tiredeness and lack of energy towards the end of each day. And I'm pretty sure that I'm going to have a decent outcome.
From here on, I'm going to add to the blog only every week or so - that should mean that I'll have something to add that's informative, rather than have it all a stream of consciousness thing.
One reality that has become pretty apparent pretty quickly, is that this is much more a war of attrition than anything else. The chemo is a slow, laborious process that might (slightly better than 50% chance) result in victory - but we won't really know anything for at least another four months.
After just over week on chemo, what do I know? I know that the weekend after a Day One will be bearably unpleasant (maybe 6.5/10 on my personal wellness scale?). I know that if this last week and a half is anything to go by, my fears about chemo are pretty much unfounded. Each day since last Monday I've felt better, until the last two days I would rate myself as 9/10 - and frankly, I need artificial stimulants these days to feel much beter than that in the normal course of things. I know that I will lose my hair sometime next week, but I'm not in the slightest bit concerned about that. I know that just because I've had few in the way of side affects that it won't necessarily be like that for each cycle.
And what do I think? I think I'm going to be relatively unaffected by the chemo, based upon my experiences so far. I think that I'll get used to the tiredeness and lack of energy towards the end of each day. And I'm pretty sure that I'm going to have a decent outcome.
From here on, I'm going to add to the blog only every week or so - that should mean that I'll have something to add that's informative, rather than have it all a stream of consciousness thing.
Saturday 16 June 2007
Post-chemo post #1
Saturday morning, C1D3 (that's Cycle One, Day Three for those who weren't paying attention earlier). Things are proceeding pretty well a couple of days after the first chemo session, with very little real effect at this stage.
For the record, the drugs I am having are: C1D1, epirubison and cysplatin, and constantly infused, 5FU (5-fluorouracil). In the States, according to the bulletin boards I've been reading, I think I would be having oxaliplatin instead of the cysplatin. My oncologist has no idea why they use that over there.
I spent Thursday morning in the chemo unit hooked up to various bits and pieces for about four hours, watching others come and go as they went through their regimes - some just in for an hour or so, others for a couple of hours. I was the only one who stayed the entire morning session. There were maybe 17 people through the unit in the time I was there. I sat next to a woman for some time who was in her third attempt in 18 months to kill off ovarian cancer - she said she was becoming less hopeful each treatment.
After the chemo, I was checked into the ward for the afternoon and night as a precautionary measure. I re-met a few nurses who were there just eight weeks ago when I had the dreaded gastroscopy that detected the cancer. Anyway, I was so full of anti-nausea drugs that I felt fine for the whole time - a little cotton-woolly in the head perhaps, but pretty good. And of course, no vomitting at all, which I think surprised everybody a little, but surely that was the point of the medication! Maybe its a propitious omen.
I came home mid-morning yesterday, and had a restful day, apart from wandering down for after-work drinkies (mineral water) with a few of the troops from work. Very pleasant and normal. I also had a decent couple of hours sleep during the afternoon, which I obviously needed after a fairly restless Thursday night.
This morning, Gaye and I took the dog for a a forty minute walk, and that wasn't too taxing either, so I hope its not too early to say "I'm back!"
Now for the downside. When I was changing from jimjams into walking gear this morning, for a few short seconds I was ...... nude .......... except for the belt which holds up the walkman-sized chemo pump which I wear on my left hip. I caught a glimpse of myself in the mirror, and I have to say that I have seen few stranger sights than me with all my new plumbing exposed! All over my chest, tubes running this way and that, descending to a couple of loops around the black pack on the hip - and the belt. And of course the dressings covering the portacath, which is in itself quite a visible presence on my chest. No wonder Gaye was finding it difficult to control herself!!
Another very small side affect is that I make funny noises when I move. The point of the needle in the portacath is scratching against the back plate, and every time I move my arm - to walk, for instance - there is quite an obvious scratching noise. I'll no doubt get used to it, and it will be a great party trick for the kids when they get down here next week.
For the record, the drugs I am having are: C1D1, epirubison and cysplatin, and constantly infused, 5FU (5-fluorouracil). In the States, according to the bulletin boards I've been reading, I think I would be having oxaliplatin instead of the cysplatin. My oncologist has no idea why they use that over there.
I spent Thursday morning in the chemo unit hooked up to various bits and pieces for about four hours, watching others come and go as they went through their regimes - some just in for an hour or so, others for a couple of hours. I was the only one who stayed the entire morning session. There were maybe 17 people through the unit in the time I was there. I sat next to a woman for some time who was in her third attempt in 18 months to kill off ovarian cancer - she said she was becoming less hopeful each treatment.
After the chemo, I was checked into the ward for the afternoon and night as a precautionary measure. I re-met a few nurses who were there just eight weeks ago when I had the dreaded gastroscopy that detected the cancer. Anyway, I was so full of anti-nausea drugs that I felt fine for the whole time - a little cotton-woolly in the head perhaps, but pretty good. And of course, no vomitting at all, which I think surprised everybody a little, but surely that was the point of the medication! Maybe its a propitious omen.
I came home mid-morning yesterday, and had a restful day, apart from wandering down for after-work drinkies (mineral water) with a few of the troops from work. Very pleasant and normal. I also had a decent couple of hours sleep during the afternoon, which I obviously needed after a fairly restless Thursday night.
This morning, Gaye and I took the dog for a a forty minute walk, and that wasn't too taxing either, so I hope its not too early to say "I'm back!"
Now for the downside. When I was changing from jimjams into walking gear this morning, for a few short seconds I was ...... nude .......... except for the belt which holds up the walkman-sized chemo pump which I wear on my left hip. I caught a glimpse of myself in the mirror, and I have to say that I have seen few stranger sights than me with all my new plumbing exposed! All over my chest, tubes running this way and that, descending to a couple of loops around the black pack on the hip - and the belt. And of course the dressings covering the portacath, which is in itself quite a visible presence on my chest. No wonder Gaye was finding it difficult to control herself!!
Another very small side affect is that I make funny noises when I move. The point of the needle in the portacath is scratching against the back plate, and every time I move my arm - to walk, for instance - there is quite an obvious scratching noise. I'll no doubt get used to it, and it will be a great party trick for the kids when they get down here next week.
Sunday 10 June 2007
A difficult decision
I've come to a decision over the last couple of days, after a fair amount of agonising: I've decided not to attend the Gawler program until after I've completed chemo, i.e. in October or November, depending upon timing . My main reason is so that I can give my full attention to the chemo process. If I wanted to go to Gawler, I would have had to have taken a ten day break in chemo, and after some thought, I don't see how that would be particularly useful. And if the chemo goes well, then Gawler will be a valuable addition to my therapy. If chemo doesn't have the impact I hope for, then Gawler becomes the last shot in my magazine, and will probably be more potent because of that.
In the meantime, we have had an almost decadent long weekend so far, with two sleep-ins and a long walk today with Oscar (the dog) - almost two hours. Alas, no bike rides yet, but maybe tomorrow.
As we grazed at breakfast, Gaye happened on our stars in one of the Sunday paper magazines. I quote them without comment.
Pisces (me): Making no choices absolves some people of taking responsibility for their own lives. You've been very courageous setting out to follow your own path. This has been stressful, but soon it will bring delightful rewards. Some great news in the week ahead!
Taurus (Gaye): You have been steeling yourself for an earth-shattering, heart-wrenching change. You need not fear. The change that's about to take place is essentially a change of attitude, not circumstances. You will see that all is due to be much as it was, only better. Life is about to bring you something special.
In a similar spirit, I decided to test the predictions above using my own methods (actually a variation of Kabala as I understand it). I allowed one of my favourite books, Dave Pelz's Putting Bible to fall open at a random page. With my eyes closed, I then placed my finger, once again entirely at random, on the page that opened before me. Look at the passage I touched:
It's time to move on, from describing and discussing the 15 building blocks of putting to explaining a few other influences. But I want to warn you of something [my emphasis - TD]. If you go out and try to put all I've said in this and the last few chapters to work immediately, before you finish reading this book, you might become confused and give up, reverting to your old "gut-feel" putting. I don't want that to happen [once again, my emphasis - TD].
Now that is truly spooky. Next time, I am going to see if I get similarly appropriate messages from The Chappell Years. Stay reading
In the meantime, we have had an almost decadent long weekend so far, with two sleep-ins and a long walk today with Oscar (the dog) - almost two hours. Alas, no bike rides yet, but maybe tomorrow.
As we grazed at breakfast, Gaye happened on our stars in one of the Sunday paper magazines. I quote them without comment.
Pisces (me): Making no choices absolves some people of taking responsibility for their own lives. You've been very courageous setting out to follow your own path. This has been stressful, but soon it will bring delightful rewards. Some great news in the week ahead!
Taurus (Gaye): You have been steeling yourself for an earth-shattering, heart-wrenching change. You need not fear. The change that's about to take place is essentially a change of attitude, not circumstances. You will see that all is due to be much as it was, only better. Life is about to bring you something special.
In a similar spirit, I decided to test the predictions above using my own methods (actually a variation of Kabala as I understand it). I allowed one of my favourite books, Dave Pelz's Putting Bible to fall open at a random page. With my eyes closed, I then placed my finger, once again entirely at random, on the page that opened before me. Look at the passage I touched:
It's time to move on, from describing and discussing the 15 building blocks of putting to explaining a few other influences. But I want to warn you of something [my emphasis - TD]. If you go out and try to put all I've said in this and the last few chapters to work immediately, before you finish reading this book, you might become confused and give up, reverting to your old "gut-feel" putting. I don't want that to happen [once again, my emphasis - TD].
Now that is truly spooky. Next time, I am going to see if I get similarly appropriate messages from The Chappell Years. Stay reading
Wednesday 6 June 2007
Chemo: yuck!!
Well, I might have been a bit hasty in describing my upcoming chemo (to nearly everybody I spoke to) as fairly easy, low dose enabled by the fact that my cancer is slow-growing and relatively non-aggressive. The chemo regime I start next Thursday is a very aggressive one made possible only by the fact that I am relatively young and fit! Well, thanks for that, I 'spose.
So, here's what I know. The surgeons have pretty much given up on me because of the lymph node secondaries, and I've pretty much given up on them because of the brutality of the Whipple. So my future is solidly in the hands of the oncologist, Paul Craft. At the end of the treatment regime described below, we will re-assess based on the outcome: more chemo, or back off for a while because we've knocked it on the head, and wait a couple of years for it to re-occur - or not!
So from next Thursday, I start a 21 day cycle of chemo which starts with near-lethal doses of two somethings or other, administered in the hospital during a 4-5 hour stay, followed by 20 days of a lethal cocktail called 5F, 24/7. Then start again, and then again, and again, and again and again. Six cycles in all, finishing in early October.
Possible symptoms include: tinnitus, numbness in hands and feet, loss of taste for some food, and loss of appetite ("a good thing that you've got a bit to spare, Tony"), partial hearing loss, skin rashes of various degrees of seriousness, loss of skin from hands and feet, darkening of the skin a la Maurie Carr (!), nausea (especially after the start of each cycle), and tiredness. "Oh, and you WILL lose your hair." "But the doctor said....." "Honestly, he doesn't see the results, he just prescribes the drugs!". Once again, thanks very much. I think I'll ask my mum to knit a beanie for me, and there was a notice in the reception area for wig of all styles and colours.
One good thing, tho, is that I'll be able to shower because the little wellhead in my chest is really nifty. A bit of tennis can and may happen, too.
The main nurse, Fiona, is extremely competent and pleasant. The unit itself has a nice feel to it, 10 or 12 recliners around the room , with tables alongside to put books and papers on. The main injecting room is a little sparse, but the kids there seem nice, and I'm sure I'll settle in okay once I understand what the playground rules are. I sort of expect to see some kids over and over again, as our cycles co-incide. Presumably, some will drop off the perch (but not me!), and we'll be joined by new kids.
Paul Craft (oncolgist) fills me with confidence.
In the middle of all this, I have registered for the Gawler Foundation 10 day program in August, so we'll have to figure out what to do about that in terms of chemo.
Nothing more till next week, probably Friday after my first little dose of poisons. In the meantime, I intend to enjoy my last weekend for a while as a "normal" person. Tomorrow, I will get my hair cut as short as I can stand it. A couple of rides over the weekend, too. Oh, and perhaps an indian meal at Pearce shops.
Bye for now.
So, here's what I know. The surgeons have pretty much given up on me because of the lymph node secondaries, and I've pretty much given up on them because of the brutality of the Whipple. So my future is solidly in the hands of the oncologist, Paul Craft. At the end of the treatment regime described below, we will re-assess based on the outcome: more chemo, or back off for a while because we've knocked it on the head, and wait a couple of years for it to re-occur - or not!
So from next Thursday, I start a 21 day cycle of chemo which starts with near-lethal doses of two somethings or other, administered in the hospital during a 4-5 hour stay, followed by 20 days of a lethal cocktail called 5F, 24/7. Then start again, and then again, and again, and again and again. Six cycles in all, finishing in early October.
Possible symptoms include: tinnitus, numbness in hands and feet, loss of taste for some food, and loss of appetite ("a good thing that you've got a bit to spare, Tony"), partial hearing loss, skin rashes of various degrees of seriousness, loss of skin from hands and feet, darkening of the skin a la Maurie Carr (!), nausea (especially after the start of each cycle), and tiredness. "Oh, and you WILL lose your hair." "But the doctor said....." "Honestly, he doesn't see the results, he just prescribes the drugs!". Once again, thanks very much. I think I'll ask my mum to knit a beanie for me, and there was a notice in the reception area for wig of all styles and colours.
One good thing, tho, is that I'll be able to shower because the little wellhead in my chest is really nifty. A bit of tennis can and may happen, too.
The main nurse, Fiona, is extremely competent and pleasant. The unit itself has a nice feel to it, 10 or 12 recliners around the room , with tables alongside to put books and papers on. The main injecting room is a little sparse, but the kids there seem nice, and I'm sure I'll settle in okay once I understand what the playground rules are. I sort of expect to see some kids over and over again, as our cycles co-incide. Presumably, some will drop off the perch (but not me!), and we'll be joined by new kids.
Paul Craft (oncolgist) fills me with confidence.
In the middle of all this, I have registered for the Gawler Foundation 10 day program in August, so we'll have to figure out what to do about that in terms of chemo.
Nothing more till next week, probably Friday after my first little dose of poisons. In the meantime, I intend to enjoy my last weekend for a while as a "normal" person. Tomorrow, I will get my hair cut as short as I can stand it. A couple of rides over the weekend, too. Oh, and perhaps an indian meal at Pearce shops.
Bye for now.
Wednesday 30 May 2007
Its in, and it was a doddle
Today went really well, and the portocath is in place. I have two big dressings high on my left chest which disguise two wounds - one where the portocath is, and one where the line goes into the chest cavity.
I'm home, have been since 3pm, and feeling pretty damn fine! The whole day was an exercise in positive happenings, with nothing going wrong, or not according to plan - I even got into theatre almost exactly at the time they said I would. Both the surgeon and the aneasthetist were in jovial moods, and we had a few laughs before they got sick of me and pumped me full of sleep!
I came to, covered in dried betadine, and with lots of slobber on the pillow from the open-mouthed drooling that characterises my sleeping. Of course nobody told me about the yellow stain all over the left side of my head until after I'd been to the chemist to get a prescription filled, and to Woolies to get some vegies. No wonder people looked at me strangely!
Tomorrow, back to work to earn a crust!
Next step, chemo next Thursday/Friday.
I'm home, have been since 3pm, and feeling pretty damn fine! The whole day was an exercise in positive happenings, with nothing going wrong, or not according to plan - I even got into theatre almost exactly at the time they said I would. Both the surgeon and the aneasthetist were in jovial moods, and we had a few laughs before they got sick of me and pumped me full of sleep!
I came to, covered in dried betadine, and with lots of slobber on the pillow from the open-mouthed drooling that characterises my sleeping. Of course nobody told me about the yellow stain all over the left side of my head until after I'd been to the chemist to get a prescription filled, and to Woolies to get some vegies. No wonder people looked at me strangely!
Tomorrow, back to work to earn a crust!
Next step, chemo next Thursday/Friday.
Monday 28 May 2007
A small step forward
Met with the surgeon this morning - a really nice young bloke. He explained the portocath to me.
Imagine three hollow ten cent pieces stacked one atop the other, with a rounded top surface with a hard gel-like filling. That's what's going onto the chest wall on Wednesday round lunch time. It has a long mouse tail (40cm?) of thin very soft plastic which will be threaded through into a vein in my chest cavity. This tube will sit in the vein, ending very close to the heart.
Chemo will be pumped into the portocath through a hole punctured in the top with a special needle. Presumably, there will be some sort of plumbing on the outside of my chest put there by the Oncologist - sort of like a well-head. Then we sit and wait for five months, or until it becomes clear that something - or nothing - is happening.
As an aside, Gaye and I had a great couple of days in Sydney. Saw Priscilla at the Lyric Theatre. It is phenomenal! And to think that Tony Sheldon (Bernice) and I were once considered equally talented. Admittedly, we were 13 or 14 at the time!
Also, decided to keep the bike. It's symbolic as much as anything. Selling it sort of means I don't expect to ride it again (the case when it looked as if I was having the Whipples), but now I intend it to be the first of many large capacity BMWs to grace the D'Arcy garage!!
More on Thursday.
Imagine three hollow ten cent pieces stacked one atop the other, with a rounded top surface with a hard gel-like filling. That's what's going onto the chest wall on Wednesday round lunch time. It has a long mouse tail (40cm?) of thin very soft plastic which will be threaded through into a vein in my chest cavity. This tube will sit in the vein, ending very close to the heart.
Chemo will be pumped into the portocath through a hole punctured in the top with a special needle. Presumably, there will be some sort of plumbing on the outside of my chest put there by the Oncologist - sort of like a well-head. Then we sit and wait for five months, or until it becomes clear that something - or nothing - is happening.
As an aside, Gaye and I had a great couple of days in Sydney. Saw Priscilla at the Lyric Theatre. It is phenomenal! And to think that Tony Sheldon (Bernice) and I were once considered equally talented. Admittedly, we were 13 or 14 at the time!
Also, decided to keep the bike. It's symbolic as much as anything. Selling it sort of means I don't expect to ride it again (the case when it looked as if I was having the Whipples), but now I intend it to be the first of many large capacity BMWs to grace the D'Arcy garage!!
More on Thursday.
Saturday 26 May 2007
Stocktake: where I'm up to now.
Its been just over a month since we were hit with the news, and given that I'm waiting for Gaye to get ready so that we can leave for Sydney for the weekend (I'm off to the Rugby, and then we're both going to Priscilla etc at the Sydney Casino on Sunday), I thought I'd reflect on how I am with all this.
Good, really.
Sometime in the next week or so we'll settle in for the long run of chemo that will give us the best indication of my medium and long term future. In the meantime, I have a sneaking suspicion that my unsuitability for surgery will be a blessing. I've been such a whooser over the small stent in my gut that I suspect that the major pain and inconvenience that the Whipples would have bought would have been beyond me (easy to say from where I'm sitting!).
Gaye and I are both resolved to see this through successfully, and we both understand that the solution is only partly medical, and that the major part is psychological/spritual (in the non-religious sense) . Lucky for the pragmatist in both of us, there are many exemplars for success, such as Ian Gawler. We have started to make the nutritional changes necessary, and I am as fit as I have been for a while - not quite injury-free, but........ Oh, and I've lost a total of 8 kilos, but I'm holding where I am.
I still need to track down more information on the implications of the spread of the cancer to the lymph nodes - I have no idea how that works yet, but I have booked an appointment with the oncologist week after next to have a very detailed discussion.
I have received a couple of very good pieces of advice over the time, but perhaps the best is from an in-remission cancer sufferer I was put in touch with by friends. She said: "Don't pay much attention to other people's cancer stories. Every case is different. Your cancer and your circumstances are yours alone. If you listen to them, the positive ones will make you fly, while the negative ones will bring you crashing down! And that's not good for you. Neither is it ever an accurate reflection of what will happen to you!" So now, I don't log onto the cancer web-groups as often, and I just skim through the emails I get. All in the name of sanity.
Good, really.
Sometime in the next week or so we'll settle in for the long run of chemo that will give us the best indication of my medium and long term future. In the meantime, I have a sneaking suspicion that my unsuitability for surgery will be a blessing. I've been such a whooser over the small stent in my gut that I suspect that the major pain and inconvenience that the Whipples would have bought would have been beyond me (easy to say from where I'm sitting!).
Gaye and I are both resolved to see this through successfully, and we both understand that the solution is only partly medical, and that the major part is psychological/spritual (in the non-religious sense) . Lucky for the pragmatist in both of us, there are many exemplars for success, such as Ian Gawler. We have started to make the nutritional changes necessary, and I am as fit as I have been for a while - not quite injury-free, but........ Oh, and I've lost a total of 8 kilos, but I'm holding where I am.
I still need to track down more information on the implications of the spread of the cancer to the lymph nodes - I have no idea how that works yet, but I have booked an appointment with the oncologist week after next to have a very detailed discussion.
I have received a couple of very good pieces of advice over the time, but perhaps the best is from an in-remission cancer sufferer I was put in touch with by friends. She said: "Don't pay much attention to other people's cancer stories. Every case is different. Your cancer and your circumstances are yours alone. If you listen to them, the positive ones will make you fly, while the negative ones will bring you crashing down! And that's not good for you. Neither is it ever an accurate reflection of what will happen to you!" So now, I don't log onto the cancer web-groups as often, and I just skim through the emails I get. All in the name of sanity.
Thursday 24 May 2007
Next step scheduled
Well, after my whinge of an hour or so ago, its all happening again. I just had a phone call from Canberra Hospital: I see the surgeon (James Ferguson) on Monday, and the procedure itself is booked in for Wednesday at National Capital Hospital (I guess this means that I'm back on the Private Insurance bandwagon).
Moving right along, now....
I just rang the oncologist to see what was happening about my porta-cath and therefore my chemo. The doctor's staff told me that they had written (on Monday) to a surgeon in the hospital (read this carefully!) asking him whether he would consider putting a porta-cath in for me!! The letter hadn't left yet, but she would fax it over now. I mentioned that it sounded like I was in the grip of the public system, to which she agreed, Yes, I was! I asked, with my very jolliest voice on, whether she would do whatever it took, including taking (for the fiftieth time) my Medibank Private m'ship number, so that I was treated like a Private Patient i.e. still disdainfully, but faster! (small voice) Okay, and I'll ring you back immediately with some progress - that was two hours ago. Double sigh.......
The stent. I'm not sure if its that I'm getting used to it, or whether its actually a little better, but the elephant that has been jumping on my stomach has been replaced by a lighter animal, perhaps a small jersey cow? Still uncomfortable, but certainly not as painful. Tonight, a slice of pizza!!
The stent. I'm not sure if its that I'm getting used to it, or whether its actually a little better, but the elephant that has been jumping on my stomach has been replaced by a lighter animal, perhaps a small jersey cow? Still uncomfortable, but certainly not as painful. Tonight, a slice of pizza!!
Monday 21 May 2007
Mmmm, still not right
Just a short entry. The stent is in place, but I still have tenderness and discomfort in the area. I'm told that 36-48 hours of this is not unreasonable, but here I am, 3 days later and I still feel as if an elephant has stomped on my stomach.
I have eaten small amounts of solid food, but I'm not that confident about it all - I'll wait until the pain goes before I have pizza. And perhaps steak sometime around December.
As an aside, my glasses were cleaned up with the food tray at the hospital on Saturday. After numerous calls to both the Hospital and its kitchen - and being told there was no sign of them - this afternoon I went in and got measured up for a new pair. As I'm off to the Rugby on Saturday with Denis, I asked for them to be rushed through. You guessed it, at 5pm this arvo, a call from the hospital: "We've found your glasses!" A saving of $750!
I have eaten small amounts of solid food, but I'm not that confident about it all - I'll wait until the pain goes before I have pizza. And perhaps steak sometime around December.
As an aside, my glasses were cleaned up with the food tray at the hospital on Saturday. After numerous calls to both the Hospital and its kitchen - and being told there was no sign of them - this afternoon I went in and got measured up for a new pair. As I'm off to the Rugby on Saturday with Denis, I asked for them to be rushed through. You guessed it, at 5pm this arvo, a call from the hospital: "We've found your glasses!" A saving of $750!
Saturday 19 May 2007
The stent's in place
The news is that I can now eat solids, as Thommo put a 9cm kevlar stent in my duodenum on Friday afternoon. Of course, it didn't all go smoothly........
I turned up at the hospital at 10am as requested, only to be told by his nurses that "he won't start till 1pm - we have no idea why he would tell you to get here so early!" Back home and paid attention to some work, then returned to the clinic, but they didn't have my papers, and admitted me without them (which caused a few small ructions later). The doctor and I had a good old chat while he gowned up, and 1.5 hours later, I was done. Apparently a very technical piece of work - took much longer than expected/normal.
When I woke up I had dreadful pain in my guts, so they gave me a shot of morphine, which settled it down quickly, but made me feel slightly nauseous for the next 18 hours. Because of the pain, they admitted me to National Capital Private Hospital for the night. Much more professional than last time!
I woke up feeling a little worse for wear this morning, and the doctor (my 3rd GIT guy - Graham Kaye) let me out at about 3pm. Graham is the best of the three I've met, although he was running hard doing weekend rounds. Apparently, there are six GITs in Canberra, and four of them had gone to the same conference in Washington, and the other one was away. No wonder he was rushed!
Anyway, here I am at home, all ready to go in for another procedure to insert my Porta-Cath for the chemo. I guess there's a good chance that'll happen next week.
Not feeling too crash hot, but happy to be here. Gaye has taken the dog for a walk while I "blog on". Tomorrow, back into routine of exercise and meditation - if I started either just now, I reckon I wuold go to sleep.
I turned up at the hospital at 10am as requested, only to be told by his nurses that "he won't start till 1pm - we have no idea why he would tell you to get here so early!" Back home and paid attention to some work, then returned to the clinic, but they didn't have my papers, and admitted me without them (which caused a few small ructions later). The doctor and I had a good old chat while he gowned up, and 1.5 hours later, I was done. Apparently a very technical piece of work - took much longer than expected/normal.
When I woke up I had dreadful pain in my guts, so they gave me a shot of morphine, which settled it down quickly, but made me feel slightly nauseous for the next 18 hours. Because of the pain, they admitted me to National Capital Private Hospital for the night. Much more professional than last time!
I woke up feeling a little worse for wear this morning, and the doctor (my 3rd GIT guy - Graham Kaye) let me out at about 3pm. Graham is the best of the three I've met, although he was running hard doing weekend rounds. Apparently, there are six GITs in Canberra, and four of them had gone to the same conference in Washington, and the other one was away. No wonder he was rushed!
Anyway, here I am at home, all ready to go in for another procedure to insert my Porta-Cath for the chemo. I guess there's a good chance that'll happen next week.
Not feeling too crash hot, but happy to be here. Gaye has taken the dog for a walk while I "blog on". Tomorrow, back into routine of exercise and meditation - if I started either just now, I reckon I wuold go to sleep.
Thursday 17 May 2007
Its on tomorrow
Finally some movement forward. I have just been told to bring my best tie-at-the-back dressing gown and my fluffy bedsocks and report to Canberra Hospital tomorrow at 10am to have a stent inserted in my guts. This should mean, all going well, that I will be able to eat relatively normally within a day or so, and it becomes easier to keep my strength up as I go through Chemo.
The guy who's doing it (Thommo, remember) seems pleasant, and took me through the risks involved. These seem to be,in order of priority: he won't be able to physically insert the stent (which is made of kevlar, apparently) because the obstruction is a long way down my gut ("very technical"); there could be bleeding ("I've never seen that from one that I've done"); he could perforate the gut while he's in there ("That's careless, and I'm not generally careless"), or the cancer might regrow around the stent ("that's out of my hands, I'm afraid").
I'm on clear liquids from now, and nil by mouth from midnight tonight.
I'll post again tomorow afternoon after its done - sometime after 3pm, I guess - but in the meantime, assume whatever position enables you to send your best vibes my way, please.
The guy who's doing it (Thommo, remember) seems pleasant, and took me through the risks involved. These seem to be,in order of priority: he won't be able to physically insert the stent (which is made of kevlar, apparently) because the obstruction is a long way down my gut ("very technical"); there could be bleeding ("I've never seen that from one that I've done"); he could perforate the gut while he's in there ("That's careless, and I'm not generally careless"), or the cancer might regrow around the stent ("that's out of my hands, I'm afraid").
I'm on clear liquids from now, and nil by mouth from midnight tonight.
I'll post again tomorow afternoon after its done - sometime after 3pm, I guess - but in the meantime, assume whatever position enables you to send your best vibes my way, please.
Wednesday 16 May 2007
Hmmm - progress, sort of
The last couple of days have been intensely frustrating, and have gradually taken a toll on my good humour. In short I seem to have fallen between the cracks, with no-one taking any real responsibility for resolving the situation. I understand entirely that my feeling that I'm the most important person in this thing is the best example of pure subjectivity I can think of, but you would reckon that significant others in the process (i.e. doctors and their administrators) would see it my way!
Deep breaths.............
I have been on the phone most of the day trying to figure out who is responsible for my next step (remember, either a stent or a bypass). Turns out that Noel Tait did make it to the meeting on Friday, and I was discussed. His admin person told me this morning when I rang that she was arranging an urgent(!) appointment with Tony Clarke (GIT guy). They'd be in touch. So this afternoon I rang Clarke's rooms. Not there, his admin person will ring back - "she has your number". Back to Tait's office. "Who owns me at the moment? Tony Clarke? That means a stent, doesn't it?".
Then Tony Clarke himself rang, and said that they'd decided to put in a stent, but that he couldn't do it because he was going for a junket (sorry, conference) to Washington for two weeks on Friday, but that Andrew Thompson (Thommo!) was quite good at these things, and could do me in the next couple of days, or in three weeks, because he's going to Engerland "on a junket" (true!), too.
So here's the go. Apparently I am to have a stent put in by Thommo (who, remember, is quite good at these things). Tomorrow or Friday. The rationale is that the stent won't annoy the cancer, and if it goes wrong ("about 80% of the time they're fine") then there's still the option of the bypass, which presumably Noel Tait would do, if he's in the country. If the bypass didn't work, there's really no way to go. Actually makes sense when you think about it like that.
More when I get the phone call from Thommo's people, which might even be this arvo - its still light after all.
Deep breaths.............
I have been on the phone most of the day trying to figure out who is responsible for my next step (remember, either a stent or a bypass). Turns out that Noel Tait did make it to the meeting on Friday, and I was discussed. His admin person told me this morning when I rang that she was arranging an urgent(!) appointment with Tony Clarke (GIT guy). They'd be in touch. So this afternoon I rang Clarke's rooms. Not there, his admin person will ring back - "she has your number". Back to Tait's office. "Who owns me at the moment? Tony Clarke? That means a stent, doesn't it?".
Then Tony Clarke himself rang, and said that they'd decided to put in a stent, but that he couldn't do it because he was going for a junket (sorry, conference) to Washington for two weeks on Friday, but that Andrew Thompson (Thommo!) was quite good at these things, and could do me in the next couple of days, or in three weeks, because he's going to Engerland "on a junket" (true!), too.
So here's the go. Apparently I am to have a stent put in by Thommo (who, remember, is quite good at these things). Tomorrow or Friday. The rationale is that the stent won't annoy the cancer, and if it goes wrong ("about 80% of the time they're fine") then there's still the option of the bypass, which presumably Noel Tait would do, if he's in the country. If the bypass didn't work, there's really no way to go. Actually makes sense when you think about it like that.
More when I get the phone call from Thommo's people, which might even be this arvo - its still light after all.
Monday 14 May 2007
Still no news.........
Monday night, and nothing to report, but seeing that I promised news.....
I rang the Surgeon today to find out the results of Friday's case management meeting: do I have to pack my toothbrush yet? Only to find out that there was some sort of emergency happening on Friday, and Dee-Anne is not even sure if Noel (the surgeon, remember?) went to the meeting at all. She promised to get back to me, but wisely didn't nominate a day. In the meantime, there is nothing to report. Sorry.
Oh, except that I successfully posted the photo opposite!
And apparently there is a whole monastery of Buddhists on retreat in Southern France spinning prayer wheels and chanting for me (courtesy of Chris McCarthy), and a parish full of RCs in South Canberra and the Carmelite nuns on Mugga Way doing the catholic equivalent. These join the Sydney Buddhists (Jill R) and the Chev Old Boys Ass'n. Now all I need is the Bleedin' Choir Invisibule! More tomorrow.
I rang the Surgeon today to find out the results of Friday's case management meeting: do I have to pack my toothbrush yet? Only to find out that there was some sort of emergency happening on Friday, and Dee-Anne is not even sure if Noel (the surgeon, remember?) went to the meeting at all. She promised to get back to me, but wisely didn't nominate a day. In the meantime, there is nothing to report. Sorry.
Oh, except that I successfully posted the photo opposite!
And apparently there is a whole monastery of Buddhists on retreat in Southern France spinning prayer wheels and chanting for me (courtesy of Chris McCarthy), and a parish full of RCs in South Canberra and the Carmelite nuns on Mugga Way doing the catholic equivalent. These join the Sydney Buddhists (Jill R) and the Chev Old Boys Ass'n. Now all I need is the Bleedin' Choir Invisibule! More tomorrow.
Saturday 12 May 2007
No news is ......... No news!
Gosh, doctors have an easy life. After sweating all day, waiting for someone to ring me and organise me for the next round of whatever, I contacted the surgeon's office myself mid-afternoon to see if I could get things going. An answering machine!! They'd gone home for the weekend!
Presumably, they'll get round to me sometime on Monday. I'm still hoping for something to start next week.
Presumably, they'll get round to me sometime on Monday. I'm still hoping for something to start next week.
Thursday 10 May 2007
Today, from an oncological point of view
I have developed a real phobia about doctors - every time we've been recently, we've left with a bit more stuffing belted out of us. Well, some movement forward today. We (Gaye and I hunt as a pack on these things!) visited the oncologist today, a bloke called Paul Craft (it turns out that he lives just down the street from us!), and from his point of view, things were pretty clear. Of course all this is being discussed at the case management committee meeting tomorrow, but what we expect is...........
Next week I will have either a stent put in by endoscope, or a by-pass of the tumour through surgery (it sets me back a couple of weeks, but I think I would like a scar to show for this!). Then soon after that, chemotherapy starts. Chemo is delivered through a semi-permanent canula in my chest. I will have "about my person" a little device which delivers a constant infusion of a chemical cocktail, day and night for the next five months, with a major jolt to the system in hospital every three weeks.
Testing continues during this time, but at the end of this process, 60% of people have a success, and success is 50% shrinkage of the cancer. If no success, then we go with a different cocktail! Simple. 60% of people lose their hair - as if that was a problem for me - and many folk have only a minor reaction to this type of chemo. Chemicals are as for other stomach-type cancers, as apparently no one has developed a specific treatment for this little bastard.
If success comes, then we try to consolidate that progress by more aggressive treatment, including the renewed possibility of a Whipple's. Now that really is something to look forward to......
So now that we have very close to the final answer, Gaye and I are feeling pretty good. We've got something to aim for. And another good thing? I will be able to work, as long as its sensible. Eating probably more normal through the stent or bypass, although meals will be smaller than the pig-like portions I am used to! More tomorrow, after the doctors' gabfest.
Exercise and meditation are going well. People often ask me if the meditation is doing me any good. I have no idea! Its a real skill, and so far I am at the bottom of the class. I do know that I enjoy it, even though I occasionally drop off while "in the position", and I am committed to being better at it. Any hints?
Next week I will have either a stent put in by endoscope, or a by-pass of the tumour through surgery (it sets me back a couple of weeks, but I think I would like a scar to show for this!). Then soon after that, chemotherapy starts. Chemo is delivered through a semi-permanent canula in my chest. I will have "about my person" a little device which delivers a constant infusion of a chemical cocktail, day and night for the next five months, with a major jolt to the system in hospital every three weeks.
Testing continues during this time, but at the end of this process, 60% of people have a success, and success is 50% shrinkage of the cancer. If no success, then we go with a different cocktail! Simple. 60% of people lose their hair - as if that was a problem for me - and many folk have only a minor reaction to this type of chemo. Chemicals are as for other stomach-type cancers, as apparently no one has developed a specific treatment for this little bastard.
If success comes, then we try to consolidate that progress by more aggressive treatment, including the renewed possibility of a Whipple's. Now that really is something to look forward to......
So now that we have very close to the final answer, Gaye and I are feeling pretty good. We've got something to aim for. And another good thing? I will be able to work, as long as its sensible. Eating probably more normal through the stent or bypass, although meals will be smaller than the pig-like portions I am used to! More tomorrow, after the doctors' gabfest.
Exercise and meditation are going well. People often ask me if the meditation is doing me any good. I have no idea! Its a real skill, and so far I am at the bottom of the class. I do know that I enjoy it, even though I occasionally drop off while "in the position", and I am committed to being better at it. Any hints?
Tuesday 8 May 2007
Duodenal Cancer - What is it?
A layperson's attempt to explain one of the rarest cancers going around.
Duodenal cancer is rare. So rare that it is the only cancer that doesn't have a MySpace entry, and its wikipedia entry is more about other cancers of the small intestine than it is about duodenal cancer. This cancer will occur for about 50 people in Australia (pop. 20M) this year. As a contrast, over 500 people will share in a major Lotto prize in the same period (I know which odds I'd rather have!). Both Google and Yahoo have a small duodenal cancer group, both of which have less than 20-30 active members from around the world.
The onset of symptoms (which I am not going to attempt to list) can occur anywhere between 3-4 years before diagnosis to, in my own case, two weeks! My own symptom was that I vomitted up two days accumulated food, three times!
The default treatment for duodenal cancer, if it can be operated on, is a dreadful piece of surgery called a Whipple's Procedure, in which the bottom part of the stomach, the gall bladder, the head of the pancreas, and the whole duodenum are removed. The jejunum is then pulled up and attached to the stomach, and the various bile ducts which used to feed into the duodenum are replumbed. The operation can take anywhere between 8-12 hours, and needs an experienced surgeon for safety. Success rate on the table is currently at around 95%. But when you read the stats on the John Hopkins site, the picture is different for long termers. 56% still around after 1 year, 26% after 3 and 21% after 5 years. A bit grim - as one of my GITs said, "you don't meet many people walking the streets who have had a Whipples".
BUT, there are stats and stats. I understand that most Whipples are done on people who have other types of much more aggressive and invasive cancers, such as pancreatic cancer. Once again, the rarity of duoedenal cancer works against information flow! But I still have this sneaking suspicion that I've dodged a bullet in not being operable - this puts me in charge of my own destiny to a greater degree).
Hospital time is usually around 2 weeks, followed by anywhere up to three months off work. There seem to be a number of versions of the Whipple's, but make no mistake, it is one of the worst surgeries going around (but better than the alternative!).
After the Whipple's, people seem to be generally eating okay again, although usually in smaller and more frequency amounts, within the three months.
If the cancer is inoperable, and this is usually becuase it has been caught late, or in my case is in the very busy area of the third part of the duodenum, then chemo and or radiotherapy are tried, sometimes in concert. The aim of the therapies is at least to stop the cancer, and possibly to shrink it, thus making it operable. Inoperable cancers are by definition incurable, because the only sure way to beat cancer is to cut it out! But even incurable cancer can be successfuly managed, if the stars are aligned properly. Many people live successful and long lives with cancers still in their bodies. Some don't.
Duodenal cancer is rare. So rare that it is the only cancer that doesn't have a MySpace entry, and its wikipedia entry is more about other cancers of the small intestine than it is about duodenal cancer. This cancer will occur for about 50 people in Australia (pop. 20M) this year. As a contrast, over 500 people will share in a major Lotto prize in the same period (I know which odds I'd rather have!). Both Google and Yahoo have a small duodenal cancer group, both of which have less than 20-30 active members from around the world.
The onset of symptoms (which I am not going to attempt to list) can occur anywhere between 3-4 years before diagnosis to, in my own case, two weeks! My own symptom was that I vomitted up two days accumulated food, three times!
The default treatment for duodenal cancer, if it can be operated on, is a dreadful piece of surgery called a Whipple's Procedure, in which the bottom part of the stomach, the gall bladder, the head of the pancreas, and the whole duodenum are removed. The jejunum is then pulled up and attached to the stomach, and the various bile ducts which used to feed into the duodenum are replumbed. The operation can take anywhere between 8-12 hours, and needs an experienced surgeon for safety. Success rate on the table is currently at around 95%. But when you read the stats on the John Hopkins site, the picture is different for long termers. 56% still around after 1 year, 26% after 3 and 21% after 5 years. A bit grim - as one of my GITs said, "you don't meet many people walking the streets who have had a Whipples".
BUT, there are stats and stats. I understand that most Whipples are done on people who have other types of much more aggressive and invasive cancers, such as pancreatic cancer. Once again, the rarity of duoedenal cancer works against information flow! But I still have this sneaking suspicion that I've dodged a bullet in not being operable - this puts me in charge of my own destiny to a greater degree).
Hospital time is usually around 2 weeks, followed by anywhere up to three months off work. There seem to be a number of versions of the Whipple's, but make no mistake, it is one of the worst surgeries going around (but better than the alternative!).
After the Whipple's, people seem to be generally eating okay again, although usually in smaller and more frequency amounts, within the three months.
If the cancer is inoperable, and this is usually becuase it has been caught late, or in my case is in the very busy area of the third part of the duodenum, then chemo and or radiotherapy are tried, sometimes in concert. The aim of the therapies is at least to stop the cancer, and possibly to shrink it, thus making it operable. Inoperable cancers are by definition incurable, because the only sure way to beat cancer is to cut it out! But even incurable cancer can be successfuly managed, if the stars are aligned properly. Many people live successful and long lives with cancers still in their bodies. Some don't.
Where I'm up to with all this.
I'm actually surprisingly okay with it all.
I understand that its not fair, but there's absolutely nothing to be gained by railing against it, or becoming despondent. In fact, both of these reactions could actively harm me.
I do have not-so-good days and better days. On the not-so-good days, I find myself being a little grumpy with those around me, but they forgive me for it. I try not to abuse the priviledge!! On the good days, I'm supportive of those around me, explain what's happening in a strong voice (its getting easier) and wax philosophical about life (and death and dying). On these days, everybody is very impressed with me, and mostly so am I!
I (we) have determined that we are going to fight this thing all the way. There are three main elements to the battle at the moment, at least as I see it. First "Shock and Awe" (surgery) is not an option for me, so I have to take charge of those things I can control: emotional and physical health. So, to those ends I have consulted a nutritionist to make sure that my weight doesn't drop too much (I haven't mentioned that I've lost 5 kilos, mostly in the first two weeks), a personal trainer to get a program that will build my core strength and make me as strong as possible for whatever surgery and chemo happens, and a meditation master, because whoever does well in fighting cancer almost always puts it down to inner strength and resolve, and many have done meditation. I have also put my name down for the June live-in program at the Gawler Foundation. We'll see if that suits my schedule. Gawler's story is a powerful one.
So, my Big Rocks at the moment are: two hours of exercise a day, including a one hour early morning walk with Oskar the Dog, three half hour sessions of meditation a day (I generally get in two of them), and about five small meals. While I understand that I also need the intellectual stimulation that work will give me, in this waiting period I'm not as up for it as I would have hoped!
I understand that its not fair, but there's absolutely nothing to be gained by railing against it, or becoming despondent. In fact, both of these reactions could actively harm me.
I do have not-so-good days and better days. On the not-so-good days, I find myself being a little grumpy with those around me, but they forgive me for it. I try not to abuse the priviledge!! On the good days, I'm supportive of those around me, explain what's happening in a strong voice (its getting easier) and wax philosophical about life (and death and dying). On these days, everybody is very impressed with me, and mostly so am I!
I (we) have determined that we are going to fight this thing all the way. There are three main elements to the battle at the moment, at least as I see it. First "Shock and Awe" (surgery) is not an option for me, so I have to take charge of those things I can control: emotional and physical health. So, to those ends I have consulted a nutritionist to make sure that my weight doesn't drop too much (I haven't mentioned that I've lost 5 kilos, mostly in the first two weeks), a personal trainer to get a program that will build my core strength and make me as strong as possible for whatever surgery and chemo happens, and a meditation master, because whoever does well in fighting cancer almost always puts it down to inner strength and resolve, and many have done meditation. I have also put my name down for the June live-in program at the Gawler Foundation. We'll see if that suits my schedule. Gawler's story is a powerful one.
So, my Big Rocks at the moment are: two hours of exercise a day, including a one hour early morning walk with Oskar the Dog, three half hour sessions of meditation a day (I generally get in two of them), and about five small meals. While I understand that I also need the intellectual stimulation that work will give me, in this waiting period I'm not as up for it as I would have hoped!
The Timeline, so far
This whole thing has happened so quickly that the recent past is a blur. This timeline is as much for me as for you!
1953 - April 2007: Nothing amiss in the duodenal area at all. Zero impact on life!
13-15 April 2007: Weekend in the Hunter Valley with the Anda family. First symptoms are a couple of severe vomitting attacks.
16 April: Made appointment with GP
18 April: barium meal, followed by GP consult. Booked into hospital next day
19 April: first consult with Tony Clarke. Told that an obstruction in that area is not a good thing! Awful sleepless night.
20 April: Gastroscopy reveals growth in third part of the duodenum, which Clarke's "experience" tells him is a primary cancer. Scheduled for CT Scan.
23 April: CT Scan reveals primary cancer, some swollen adjacent lymph nodes ("I'm not sure that these are cancerous") but no secondaries. Scheduled with surgeon following Monday.
30 April: Gaye's Significant Birthday, and met with surgeon Noel Tait at Calvary Hospital. Noel thought he saw a couple of things in the CT scans that we hadn't been aware of yet. He expressed a preliminary view that it might not be operable because of its proximity and possible effect on some of the close-by blood vessels. He also didn't like the look of the lymph nodes. He rides a Ducati! Scheduled me for a PET scan in Sydney.
2 May: Drove to Sydney for a PET Scan, which involves the injection and imaging of a radioactive isotope. 3 hours in a double donut costing $5M bucks! Our health dollars at work at last!
8 May: Today. Quick consult with Noel because he was in his office when I picked up the PET Scan films for the Oncologist. Confirmed that the Cancer was inoperable. The lymph nodes are cancerous, and more are involved than we thought, going up the drainage lines (looks like up past the lungs). Because the field of cancer has spread, cutting out the main cancer would still leave the others. And because of the spreading nature of the metastices, then radiotherapy is not an option (all to be confirmed). Meeting with Oncologist scheduled for Thursday 10 May. Surgery to put in a stent to bypass the Cuckoo (my new name for the interloper - look it up!) is his next preliminary step.
11 May: Meeting of the Case Management Committee that Noel works with to determine their recommendation for resolution of my little problem! More later.
18 May: Stent in place. Put in by Andrew Thompson pre-flight to States. Had hsi tarvel clothes on!
1953 - April 2007: Nothing amiss in the duodenal area at all. Zero impact on life!
13-15 April 2007: Weekend in the Hunter Valley with the Anda family. First symptoms are a couple of severe vomitting attacks.
16 April: Made appointment with GP
18 April: barium meal, followed by GP consult. Booked into hospital next day
19 April: first consult with Tony Clarke. Told that an obstruction in that area is not a good thing! Awful sleepless night.
20 April: Gastroscopy reveals growth in third part of the duodenum, which Clarke's "experience" tells him is a primary cancer. Scheduled for CT Scan.
23 April: CT Scan reveals primary cancer, some swollen adjacent lymph nodes ("I'm not sure that these are cancerous") but no secondaries. Scheduled with surgeon following Monday.
30 April: Gaye's Significant Birthday, and met with surgeon Noel Tait at Calvary Hospital. Noel thought he saw a couple of things in the CT scans that we hadn't been aware of yet. He expressed a preliminary view that it might not be operable because of its proximity and possible effect on some of the close-by blood vessels. He also didn't like the look of the lymph nodes. He rides a Ducati! Scheduled me for a PET scan in Sydney.
2 May: Drove to Sydney for a PET Scan, which involves the injection and imaging of a radioactive isotope. 3 hours in a double donut costing $5M bucks! Our health dollars at work at last!
8 May: Today. Quick consult with Noel because he was in his office when I picked up the PET Scan films for the Oncologist. Confirmed that the Cancer was inoperable. The lymph nodes are cancerous, and more are involved than we thought, going up the drainage lines (looks like up past the lungs). Because the field of cancer has spread, cutting out the main cancer would still leave the others. And because of the spreading nature of the metastices, then radiotherapy is not an option (all to be confirmed). Meeting with Oncologist scheduled for Thursday 10 May. Surgery to put in a stent to bypass the Cuckoo (my new name for the interloper - look it up!) is his next preliminary step.
11 May: Meeting of the Case Management Committee that Noel works with to determine their recommendation for resolution of my little problem! More later.
18 May: Stent in place. Put in by Andrew Thompson pre-flight to States. Had hsi tarvel clothes on!
An Introduction to the Health Bulletin
I decided to start this Blog because of the problems of pushing information about my health to those people I wanted to know about it. After sending about 50 emails, some of them to multiple addressees, I quickly came to the realisation that many of the people to whom I'd sent those emails either didn't actually need or want to know how I was, or felt uncomfortable about being pestered by me with health updates, but were far too polite to mention it!
So, I figured that this might be a better way. I intend to send this blog address out in a huge group email, then people can keep themselves up to date if they wish, they can even comment if they wish, and initiate a conversation - entirely their call, which is how information and subjects like this should be!
So, I figured that this might be a better way. I intend to send this blog address out in a huge group email, then people can keep themselves up to date if they wish, they can even comment if they wish, and initiate a conversation - entirely their call, which is how information and subjects like this should be!
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