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.
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