i am excited FOLFOX 10 tomorrow! bag removal planned.
tomorrow is folfox 10. only 2 to go.
she said your bloods are fine, I am not even going to test then next cycle. we will do another one on the last cycle ie number 12.
she said 3 weeks after last chemo, i can get the bag off.
She said to ask surgeon to get the port out as well at the same time.
She said to get a ct prior to surgery. this will be about 6 months since last scan and I guess I will be pretty nervous about the results.
I can see the end of this cancer trip trip and can get my sea legs back.
onc would not give me blood test for vitamin, she said no interest and not warranted as far as she is concerned. no point pushing the point. I offered to email her the studies, no interest.
i mnetioned to onc I am treating diarrhea with naturopathy. also no interest, but she did say its good as long as it works.
how is everyone going on the folfox express ? we have not had many updates lately ?
I hope everyone is going as well as they can.
Its been an interesting ride on this train, but I am excited to see my stop coming up on the horizon.
Comments
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Good the ride is almost over...
But Pete... I'm a little surprised at your onc. I know it's the most wonderful feeling to know you are coming to the end of the 12 rounds of FOLFOX. That's quite an accomplishment and good on you that you got to the very end. I did all 12 too, but the last 3 had to be without the Oxy since the neuropathy and nerve damage got too bad for me (and unfortunately, ended up being permanent and not a temporary condition).
So, you still have two sessions to go (which will go by soooo quickly now that the end is near) and she is saying that 3 weeks after your last chemo you can get your bag off, and the port out as well. She says to get a CT prior to the surgery, so that must mean within the 3 weeks after the last chemo? And then that CT would be 6 months since he last one?
If it's been 6 months since your last CT, then why is she saying to go ahead and have the bag removed and the port taken out when she hasn't got a CT since 6 months ago? Even if this CT is perfectly clean/clear (which of course, that is what we are hoping for), the chemo won't even have left your body yet. Normal protocol (and I realize this can vary from oncologist to oncologist) would be to do a CT every 3 months while you are on treatment... and then every 3 months for a year after treatment. If they remain clear for that year, then the go ahead to have the port taken out is when most oncs are comfortable having it removed (after a year of every 3 months, then the CTs are done every 6 months). I have to admit, I have no idea what the protocol is for reversing the bag surgery, but it seems to be early when you will only have just finished 12 sessions of FOLFOX and it takes a good month, if not longer, for the chemo to leave the body. The reason one then waits for 3 months for a CT scan is, you want the chemo to be totally gone and the scan will show what is happening when you are not getting chemo.
So, I'm sure your onc has a reason for all this... but I'm just really surprised since it is not standard procedure. Did she explain why?
Cheryl0 -
sorry about permanent neuropathyCherylHutch said:Good the ride is almost over...
But Pete... I'm a little surprised at your onc. I know it's the most wonderful feeling to know you are coming to the end of the 12 rounds of FOLFOX. That's quite an accomplishment and good on you that you got to the very end. I did all 12 too, but the last 3 had to be without the Oxy since the neuropathy and nerve damage got too bad for me (and unfortunately, ended up being permanent and not a temporary condition).
So, you still have two sessions to go (which will go by soooo quickly now that the end is near) and she is saying that 3 weeks after your last chemo you can get your bag off, and the port out as well. She says to get a CT prior to the surgery, so that must mean within the 3 weeks after the last chemo? And then that CT would be 6 months since he last one?
If it's been 6 months since your last CT, then why is she saying to go ahead and have the bag removed and the port taken out when she hasn't got a CT since 6 months ago? Even if this CT is perfectly clean/clear (which of course, that is what we are hoping for), the chemo won't even have left your body yet. Normal protocol (and I realize this can vary from oncologist to oncologist) would be to do a CT every 3 months while you are on treatment... and then every 3 months for a year after treatment. If they remain clear for that year, then the go ahead to have the port taken out is when most oncs are comfortable having it removed (after a year of every 3 months, then the CTs are done every 6 months). I have to admit, I have no idea what the protocol is for reversing the bag surgery, but it seems to be early when you will only have just finished 12 sessions of FOLFOX and it takes a good month, if not longer, for the chemo to leave the body. The reason one then waits for 3 months for a CT scan is, you want the chemo to be totally gone and the scan will show what is happening when you are not getting chemo.
So, I'm sure your onc has a reason for all this... but I'm just really surprised since it is not standard procedure. Did she explain why?
Cheryl
Hi Cheryl,
its interesting to hear about your treatment standards and protocols.
I will ask ONC when I see her in 4 weeks.
My wife, kids and I and another family are off to fiji to live on this little island for 3 weeks in July. I am kind of pushing the tail end of this treatment, but I have a chance of going last minute on an amazing livaboard dive boat for 10 nights and leave the family and kids at the resort and go explore the most pristene dive sites of fiji. Assuming I continue to be well.
now I know ,. lots can go wrong. getting the port out, getting the bag off symbolises I'm cured. Now I know this is possibly to optimistic and maybe a dash opportunitistic but I have already lined up six months worth of expeditions in my head, so as long as I am NED I am off doing what I love. Focusing on health and not on treatment will be magical.
The reversal and port removal is to be scheduled 3 weeks after the last chemo, I want to book the surgery to the nearest day and then give my bottom a chance to remember what its supposed to do. Thats 7 weeks from tomorrow about the 3rd of May. I presume the CT will inform advise the surgeon and ONc about where my bowel is at. I asked about interim scans and the answer was NO, I did not push that point.
The speed of the reversal is to minimise sideeffects. generally the sooner the better.
As the bowel muscles and nerves have got to be retrained a bit. I am sure I will find out all about this.
I have been told I'll get another CT in october which will be another 6 months.
If down the track I need another port, I'll pop in get one, but god I hope not.
Not much explanation, we arrived late, she had another appointment. the consult was over in under 15 minutes. its $175 dollars per consult, thats $11.66 per minute. Its funny to think it costs me so much per question. Whats good we get a rebate hear of about $140. so the out of pocket after rebate is only $35. That for a top top onc at our top hospital. If you went public you would hardly see the onc, you get handled by the registrar/trainee.
I wore thongs because they weigh less, I did not get into trouble re weight gain, I came in around 111.85, lucky I skipped breakfast. so I took the thongs off and was testing out the numbness in my feet, they were pretty normal today which is good.
hugs,
Pete0 -
Hey Pete, you sure you wanna surrender your bag......pete43lost_at_sea said:sorry about permanent neuropathy
Hi Cheryl,
its interesting to hear about your treatment standards and protocols.
I will ask ONC when I see her in 4 weeks.
My wife, kids and I and another family are off to fiji to live on this little island for 3 weeks in July. I am kind of pushing the tail end of this treatment, but I have a chance of going last minute on an amazing livaboard dive boat for 10 nights and leave the family and kids at the resort and go explore the most pristene dive sites of fiji. Assuming I continue to be well.
now I know ,. lots can go wrong. getting the port out, getting the bag off symbolises I'm cured. Now I know this is possibly to optimistic and maybe a dash opportunitistic but I have already lined up six months worth of expeditions in my head, so as long as I am NED I am off doing what I love. Focusing on health and not on treatment will be magical.
The reversal and port removal is to be scheduled 3 weeks after the last chemo, I want to book the surgery to the nearest day and then give my bottom a chance to remember what its supposed to do. Thats 7 weeks from tomorrow about the 3rd of May. I presume the CT will inform advise the surgeon and ONc about where my bowel is at. I asked about interim scans and the answer was NO, I did not push that point.
The speed of the reversal is to minimise sideeffects. generally the sooner the better.
As the bowel muscles and nerves have got to be retrained a bit. I am sure I will find out all about this.
I have been told I'll get another CT in october which will be another 6 months.
If down the track I need another port, I'll pop in get one, but god I hope not.
Not much explanation, we arrived late, she had another appointment. the consult was over in under 15 minutes. its $175 dollars per consult, thats $11.66 per minute. Its funny to think it costs me so much per question. Whats good we get a rebate hear of about $140. so the out of pocket after rebate is only $35. That for a top top onc at our top hospital. If you went public you would hardly see the onc, you get handled by the registrar/trainee.
I wore thongs because they weigh less, I did not get into trouble re weight gain, I came in around 111.85, lucky I skipped breakfast. so I took the thongs off and was testing out the numbness in my feet, they were pretty normal today which is good.
hugs,
Pete
One day you may get tired while swimming and it would make a great emergency flotation device......
Hope your reversal is without any complications......0 -
Congrats Pete!!coloCan said:Hey Pete, you sure you wanna surrender your bag......
One day you may get tired while swimming and it would make a great emergency flotation device......
Hope your reversal is without any complications......
I had that type of discussion on my last appointment also. Isnt it exciting to be getting close to the end of this initial battle?? It been one long year for me. I'm happy for you my friend i'm sure your looking forward to a more normal way of life. "you ol sea dog" but your not that old haha.
Talk soon,
Tom0 -
im happyTMac52 said:Congrats Pete!!
I had that type of discussion on my last appointment also. Isnt it exciting to be getting close to the end of this initial battle?? It been one long year for me. I'm happy for you my friend i'm sure your looking forward to a more normal way of life. "you ol sea dog" but your not that old haha.
Talk soon,
Tom
for you pete.i remember those days i was so happy to be done and start my life again.you will be fine.just keep up the good work.i have another journey to take with this cancer i hope you stick around on here or at least come back to say hi.i know when your train ride is done you will want to put that ride behind you.congrats mate...Godbless...johnnybegood0 -
coming soon...
Hi Pete,
It's great to hear that you're getting so close to the end & I know the countdown is on!
I am surprised that your onc is saying 3 wks after chemo you can get the bag off. That is exciting, though! I always heard a minimum of 6 weeks has to be waited after stopping chemo before any surgery would ever be attempted- that's what they say around here, anyhow. Even though all seems fine, I would still push for another CT in 3 months, rather than wait the 6. Not that we're expecting anything to pop up, but better safe than sorry and catch things early if it happens. I don't want to be a downer for you and rain- sorry-but I know most oncs around here would scan every 3 months for at least the first 6 months after chemo.
Regardless, you are getting to the end and that is SO exciting!! Congrats- your trip in July sounds like it will be wonderful! I wish my family were into things like that- I admit though that I am the wimp when it comes to doing things like snorkeling and swimming in the ocean. When we went to Hawaii, I was so excited to snorkel and see all the beautiful fish underwater, but I freaked out! I had to resort to looking through the mask while hanging over the side of a raft- lol. Still saw some amazing fish though!
Have a wonderful time and enjoy feeling the excitement of finishing everything related to cancer!
Lisa0 -
YAY Pete
I am so excited for you to be doing so well on FOLFOX. Of course I know you've had the side effects but, overall you are doing so well and getting so close to being done. Seems the FOLFOX club sort of dwindled down with some of us having severe reactions or side effects (like myself). I guess this makes you a better man than me?? hahahaha
Just to let you know, Louswift is scheduled for his #12 next week. I know he is looking forward to that last disconnect as I am sure you are too. I am now in my 7th week after stopping FOLFOX and now more aware of what longer term effects are left. The toughest part for me right now is feeling so much better and not being able to do much because I'm in wait and see limbo of sorts. It makes it tough to make any kind of plans because I'm not sure what the cancer plan is just yet. I am fighting with my desire to go back to work and saying forget this stuff. That's how good I'm feeling but also how frustrating it is to have to wait. I hope you feel super good when you are done with the FOLFOX. I'm sure you will ... and how about that bag removal .... there's a cause for celebration too!0 -
Free at last!!!
That's what you're going to be hollering the first time you look down and see that bag missing. I know..... that's exactly what I did.
For me, the hardest part of all I've been through was the constant annoyance of that damned bag. Rolling over in bed at night and constantly checking to see if "baby needs changing". Embarrassing moments at work. Constantly looking at things that the Good Lord designed your body to keep you from having to look at unless you just wanted to.
My surgeon and onc agreed a TWO week recovery after chemo would suffice, and I darned near kissed them both. That was likely more to do with how well I managed the chemo though..
But, to throw a little rain on your parade Pete, there will be several weeks worth of recovery after the take down. Both the surgery area and your body getting back into the swing of things.
For me, it was two or three weeks to recover from most of the surgery, but getting back to "normal output" has been a little challenging. There was quite a bit more pain than I thought there would be, and it's not gone yet (my takedown was in November 2010).
Would I opt to keep the bag instead of having painful discharge? HELL NO!!!! It's worth it to me. And odds are that it will eventually go away.
Now if only I could find a way to get rid of this neuropothy in my hands and feet...although I may be onto something with the hand "tinglies"... have been playing a LOT of Mortal Kombat on my PS3 the last couple of weeks, and by gosh, I think my hands are actually BETTER! Could be just normal recovery, or maybe the hyper-stimulation of using that game controller, or maybe both. LOL
Keep the faith Pete... good things are in store
0 -
Oh My Gosh Pete
How WONDERFUL!! I am so happy, happy, happy for you. Happy Dance Time!!!
Winter Marie0 -
Learn something new ....pete43lost_at_sea said:sorry about permanent neuropathy
Hi Cheryl,
its interesting to hear about your treatment standards and protocols.
I will ask ONC when I see her in 4 weeks.
My wife, kids and I and another family are off to fiji to live on this little island for 3 weeks in July. I am kind of pushing the tail end of this treatment, but I have a chance of going last minute on an amazing livaboard dive boat for 10 nights and leave the family and kids at the resort and go explore the most pristene dive sites of fiji. Assuming I continue to be well.
now I know ,. lots can go wrong. getting the port out, getting the bag off symbolises I'm cured. Now I know this is possibly to optimistic and maybe a dash opportunitistic but I have already lined up six months worth of expeditions in my head, so as long as I am NED I am off doing what I love. Focusing on health and not on treatment will be magical.
The reversal and port removal is to be scheduled 3 weeks after the last chemo, I want to book the surgery to the nearest day and then give my bottom a chance to remember what its supposed to do. Thats 7 weeks from tomorrow about the 3rd of May. I presume the CT will inform advise the surgeon and ONc about where my bowel is at. I asked about interim scans and the answer was NO, I did not push that point.
The speed of the reversal is to minimise sideeffects. generally the sooner the better.
As the bowel muscles and nerves have got to be retrained a bit. I am sure I will find out all about this.
I have been told I'll get another CT in october which will be another 6 months.
If down the track I need another port, I'll pop in get one, but god I hope not.
Not much explanation, we arrived late, she had another appointment. the consult was over in under 15 minutes. its $175 dollars per consult, thats $11.66 per minute. Its funny to think it costs me so much per question. Whats good we get a rebate hear of about $140. so the out of pocket after rebate is only $35. That for a top top onc at our top hospital. If you went public you would hardly see the onc, you get handled by the registrar/trainee.
I wore thongs because they weigh less, I did not get into trouble re weight gain, I came in around 111.85, lucky I skipped breakfast. so I took the thongs off and was testing out the numbness in my feet, they were pretty normal today which is good.
hugs,
Pete
I don't know why I thought this, other than I have a few Aussie friends, so when we've discussed Healthcare Insurance, it just seemed that Canada and Australia had similar National Healthcare systems. But from what you say above... that's not the case! You say you have to pay $175 for an appointment with your oncologist???? Seriously??? Then you say you get a rebate of $140 for that $175, so is the rebate a refund from your insurance company or who is paying the rebate?
Now, another thing you said ... "if you went public you would hardly see the onc, you get handled by the registrar/trainee". What does this mean? If you use public national healthcare you'd never get to see an oncologist??? What kind of system is this??? Yikes! I had no idea it was so bad ... and here I had just assumed Canada/Australia/UK/NZ all had similar National Healthcare systems.... when obviously we are very, very different!
Here, EVERYONE gets national healthcare insurance whether you are a billionaire or below poverty. If you are dx'd with cancer then you will have an oncologist and that oncologist will put together a medical team of all the specialists/radiologists/surgeons/radiologists... whatever you need, the onc will be head of the team and make sure you get it. Any appointments you need with said specialists/surgeons/etc, you get to see THEM and are not passed off to some clerical/administration person. When you have an appt. with your oncologist, then you see your oncologist. In the case of the BC Cancer Agency, it is a training facility as well, so it's possible you will see an intern/trainee so they can get experience working with patients and different cases, but after you have had an appt. with them, you then see your own oncologist. Sometimes you do wait, because your oncologist will have seen others before you and sometimes they might have bad news to go over with a patient. That patient doesn't just get their token 10-15 minute appt... if the oncologist must spend more time with them, then so be it... it just means they start getting behind in their schedule so you may not see them right on time. BUT you KNOW that and you know that if someone needs more time, that's ok because one day you might too.
I have no idea what the going rate is for an oncologist or what they are paid.... but we don't have to pay it. It's covered by healthcare insurance, as are all the specialists/surgeons/etc.
I would hate to think you have to watch how many questions you ask because you can see the $$$ adding up at $11.66/minute. All our oncologists here are top notch as well but we don't need to pay extra money to get ahead of those who can't afford it. You say your onc is a top onc at your top hospital... yet interesting, she didn't want to hear anything about your alternative treatments, she wasn't interested in you getting earlier scans, and you said she told YOU to arrange for a CT scan and for YOU to tell your surgeon to take the port out at the same time he does the reversal surgery? Uh... just exactly what does she do for you for $175 for 15 minutes of her time?
Hehehe... I won't make that mistake again, assuming that Australians and Canadians get the same kind of care/insurance coverage... sounds like we are very, very different
Good for you and your family to be able to go to Fiji for 3 weeks!! I have only been to Fiji once and that was back in the 80s. I LOVED LOVED LOVED Fiji! Whereas Hawaii had become quite modern America, Fiji still is that romantic, tropical paradise that we all can dream of. It was beautiful and I would love to go back one day!! I'm sure you and your family are going to have a fabulous time... I wish you well with your reversal and that you are able to do everything you want to do and all the upcoming dives
Cheryl0 -
funny steve, I love itcoloCan said:Hey Pete, you sure you wanna surrender your bag......
One day you may get tired while swimming and it would make a great emergency flotation device......
Hope your reversal is without any complications......
Hi Steve,
Thanks for the kind wishes for a smooth reversal.
Your humour saved me, I have not stopped smiling while I rely.
I believe "humour saves us"
We need a touch more fun and liteness of spirit on the planet and here as well. Like your reply.
Everyday we get more new members on this board, most a bit down.
we should start selling seats its that popular, I have got my front row.
I know its the seat no one wants to buy and we are the board no one ever wants to join.
Not unless they are crazy.
In our ways we all look adversity in the face everyday and say "good morning ****" and smile, that adversity ain't got a chance.
On the weekend I went to a SCUBA DIVING TECHNICAL REBREATHER CONFERENCE, the last talk was about doing bounce dives to 300 meters. Now this airn't for the faint hearted. they all comeback half dead with persistant health issues, but they made their bodies doing somethey wanted. Soon I'll will get my rebreather ticket and start diving for 5 hours at a time. The fish and sharks won't have a chance.
Steve, at this show I saw the largest safety sausage I have ever seem. 3 meters high and about 40 centimeters in diameter. It was $80 which is cheap, so I grabbed it at the last minute of the show.
I when I go swimming with my dive gear I will be the safest diver their with regard to rescue gear. I just have the best emergency flotation device ever.
hugs
Pete0 -
tom but mate, whats normal nowTMac52 said:Congrats Pete!!
I had that type of discussion on my last appointment also. Isnt it exciting to be getting close to the end of this initial battle?? It been one long year for me. I'm happy for you my friend i'm sure your looking forward to a more normal way of life. "you ol sea dog" but your not that old haha.
Talk soon,
Tom
Hi Tom,
We are making it.
We joined a gang that really changes your perspective on life and death.
We all had our EXTREME EXPERIENCE stage 1 to stage 4 all face death,
its just the odds. I don't care, loved, empathise or praise depending on staging or odds. I hope this does not upset anyone being respectful of blake recent post.
The odds you talk about are real odds on our board, most of our stage 4 just keep on hanging around like a house guest that won't leave.
My subconsious mind is killing any cancers while I type here,
You won't hear me say "initial battle". this is the only battle I am fighting with this cancer, one long ride on the folfox express is enough.
I all of a sudden cannot spell the bad R word RECCURRRRRR , Nope cannot even type it.
and certainly don't want to ay it or think it.
my little head and mind is being filled only with positive good thoughts. I tried to put in some sad thoughts but opps no room left.
I'll see you at the convention thing one. Great just started getting finger tingles, the oxy is working. I wonder if something else tingles ? this nerve damage stuff is just so blasted unnerving.
I am off to a super hot gym filled with the best equipment and stunning wall paper.
I won 6 months free membership and change the remaining fat into muscle. Now I have technically survived its time.
Talk soon,
Pete0 -
i have no idea how you and all others here who were/are ablepete43lost_at_sea said:funny steve, I love it
Hi Steve,
Thanks for the kind wishes for a smooth reversal.
Your humour saved me, I have not stopped smiling while I rely.
I believe "humour saves us"
We need a touch more fun and liteness of spirit on the planet and here as well. Like your reply.
Everyday we get more new members on this board, most a bit down.
we should start selling seats its that popular, I have got my front row.
I know its the seat no one wants to buy and we are the board no one ever wants to join.
Not unless they are crazy.
In our ways we all look adversity in the face everyday and say "good morning ****" and smile, that adversity ain't got a chance.
On the weekend I went to a SCUBA DIVING TECHNICAL REBREATHER CONFERENCE, the last talk was about doing bounce dives to 300 meters. Now this airn't for the faint hearted. they all comeback half dead with persistant health issues, but they made their bodies doing somethey wanted. Soon I'll will get my rebreather ticket and start diving for 5 hours at a time. The fish and sharks won't have a chance.
Steve, at this show I saw the largest safety sausage I have ever seem. 3 meters high and about 40 centimeters in diameter. It was $80 which is cheap, so I grabbed it at the last minute of the show.
I when I go swimming with my dive gear I will be the safest diver their with regard to rescue gear. I just have the best emergency flotation device ever.
hugs
Pete
to continue doing things while undergoing FOLFOX , esp after surgery.....i was capable of only getting out of bed for treatments for quite some time......No way could I have swum!!!!!0 -
pay peanut get monkeysCherylHutch said:Learn something new ....
I don't know why I thought this, other than I have a few Aussie friends, so when we've discussed Healthcare Insurance, it just seemed that Canada and Australia had similar National Healthcare systems. But from what you say above... that's not the case! You say you have to pay $175 for an appointment with your oncologist???? Seriously??? Then you say you get a rebate of $140 for that $175, so is the rebate a refund from your insurance company or who is paying the rebate?
Now, another thing you said ... "if you went public you would hardly see the onc, you get handled by the registrar/trainee". What does this mean? If you use public national healthcare you'd never get to see an oncologist??? What kind of system is this??? Yikes! I had no idea it was so bad ... and here I had just assumed Canada/Australia/UK/NZ all had similar National Healthcare systems.... when obviously we are very, very different!
Here, EVERYONE gets national healthcare insurance whether you are a billionaire or below poverty. If you are dx'd with cancer then you will have an oncologist and that oncologist will put together a medical team of all the specialists/radiologists/surgeons/radiologists... whatever you need, the onc will be head of the team and make sure you get it. Any appointments you need with said specialists/surgeons/etc, you get to see THEM and are not passed off to some clerical/administration person. When you have an appt. with your oncologist, then you see your oncologist. In the case of the BC Cancer Agency, it is a training facility as well, so it's possible you will see an intern/trainee so they can get experience working with patients and different cases, but after you have had an appt. with them, you then see your own oncologist. Sometimes you do wait, because your oncologist will have seen others before you and sometimes they might have bad news to go over with a patient. That patient doesn't just get their token 10-15 minute appt... if the oncologist must spend more time with them, then so be it... it just means they start getting behind in their schedule so you may not see them right on time. BUT you KNOW that and you know that if someone needs more time, that's ok because one day you might too.
I have no idea what the going rate is for an oncologist or what they are paid.... but we don't have to pay it. It's covered by healthcare insurance, as are all the specialists/surgeons/etc.
I would hate to think you have to watch how many questions you ask because you can see the $$$ adding up at $11.66/minute. All our oncologists here are top notch as well but we don't need to pay extra money to get ahead of those who can't afford it. You say your onc is a top onc at your top hospital... yet interesting, she didn't want to hear anything about your alternative treatments, she wasn't interested in you getting earlier scans, and you said she told YOU to arrange for a CT scan and for YOU to tell your surgeon to take the port out at the same time he does the reversal surgery? Uh... just exactly what does she do for you for $175 for 15 minutes of her time?
Hehehe... I won't make that mistake again, assuming that Australians and Canadians get the same kind of care/insurance coverage... sounds like we are very, very different
Good for you and your family to be able to go to Fiji for 3 weeks!! I have only been to Fiji once and that was back in the 80s. I LOVED LOVED LOVED Fiji! Whereas Hawaii had become quite modern America, Fiji still is that romantic, tropical paradise that we all can dream of. It was beautiful and I would love to go back one day!! I'm sure you and your family are going to have a fabulous time... I wish you well with your reversal and that you are able to do everything you want to do and all the upcoming dives
Cheryl
hi cheryl,
Its just my opinion but my onc has spent lots of time with me need really needed. she has got me expensive scan for using her contacts and knowledge of the system. she is the chair of our colorectal association. she is into a couple of clinical trials and is in a select group of top onc that have very good relationship with drug companies. she obtained my oxalipplatin on compassionate grounds as its not covered under our pbs for rectal, only 5fu is. so she saved me $26000 over six months just by her relationship and a dam email. how lucky. me friend seeing a public hospital onc was offered 5fu alone and he had a more aggressive rectal cancer than mine. she writes the trials, she conducts them and reviews them. so I count myself lucky to a caring, well connected onc. she also got my into see the shrink with wife, so we have had some couple theraphy support along the way as well.
the other thing is better access to appointments, more frequent if needed and at times that suit and immediate answers to questions.
different systems public and private, I thought the extra money gets me appointments that work, top class scripts that other have to pay for. more access to pet scans. like she suspect liver involvement, so I qualified. that suspicion alone saved me $1000. i was clear as a bell.
every hospital is different here with different charges, its still a good system but dam it you go to milk it carefully to get the best care. you still get good care if you don't.
its strongest point is doctor choice. I feel sorry for the sick not able to push the system when most need it. It clear to me, the best care the best chance. Only my opinion.
what did she do for $175 for 15 monutes? she smiled, i know I know for that kind of doe.
she cared advised and said BAG OFF and PORT OUT. best $175 I spent in a long long long time even if its length was short. one senario where "size does not matter" .
fiji will be fun. I hope to dive but will see how the reconnect is going. I got 2 months between reconnect and fiji. I hope its enough. I may have to buy some nappies. hahaha!!!
love Pete0 -
your awesome as well, we all areplh4gail said:Awesome news Pete! You're
Awesome news Pete! You're almost there!
Gail
thanks gail0 -
finishing everything related to cancer!lisa42 said:coming soon...
Hi Pete,
It's great to hear that you're getting so close to the end & I know the countdown is on!
I am surprised that your onc is saying 3 wks after chemo you can get the bag off. That is exciting, though! I always heard a minimum of 6 weeks has to be waited after stopping chemo before any surgery would ever be attempted- that's what they say around here, anyhow. Even though all seems fine, I would still push for another CT in 3 months, rather than wait the 6. Not that we're expecting anything to pop up, but better safe than sorry and catch things early if it happens. I don't want to be a downer for you and rain- sorry-but I know most oncs around here would scan every 3 months for at least the first 6 months after chemo.
Regardless, you are getting to the end and that is SO exciting!! Congrats- your trip in July sounds like it will be wonderful! I wish my family were into things like that- I admit though that I am the wimp when it comes to doing things like snorkeling and swimming in the ocean. When we went to Hawaii, I was so excited to snorkel and see all the beautiful fish underwater, but I freaked out! I had to resort to looking through the mask while hanging over the side of a raft- lol. Still saw some amazing fish though!
Have a wonderful time and enjoy feeling the excitement of finishing everything related to cancer!
Lisa
Oh thanks lisa for helping me in so many ways.
I have got this clear in the head.
I maybe ned.
But I can't drink any red.
A day won't go past when I don't try to get the wife into the bed.
One day I'll be dead.
That enough said.
Its my first poem.
I'll push onc with the scan but they are so tight with medicare money, I'll ask onc for exit chemo scan.
then I'll ask surgeon for the post op scan ( around 3 months )
then I'll ask onc for post chemo 6 month scan.
different places different guidelines, just had somesay they did reconnect after 2 weeks.
As in all things here, its so dependent on the individual.
With regards the trip, just do it. I have spent my life having marvelous adventures, travelling, meeting people, getting into trouble, eating way to much and many amazing foods. Its the one pitfall I am ever so keen not to repeat, or that maybe the end of pete.
we are camping next weekend for three days with the cub/scouts about 15 families. cheap and fun. the kids will love it.
hugs,
Pete0
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