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.
Wednesday 30 May 2007
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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