Hurry up, and wait again......

CanadaSue

Hi all,

history:

Dx in Jan 06 surgery twice in 06,the last surgery left Bill with an illiostomy (sp) followed by 9/12 rounds of chemo. reoccurance in 07 with surgery in 08 to remove his bladder - he now also has a illioconduit. A little humor - He is the only guy I know who does not have to make pit stops on a road trip. :-) 08 2 tumors on the liver are spotted,
and the tailbone area also lights up on the pet scan. the day before they were to start radiation, Bill ends up in the hospital with the abscess again, called our cancer centre to let them know he can not start the treatments, then we got to thinking why radiate him if they are not sure it is cancer. Good thing we waited and had them do a biopsey - no cancer in that area, they would have radiated him for nothing. Yikes haven't run into that doctor yet, I do believe I would have a few choice words for him.


We finally saw our onc on Friday. After having Bill end up in the hospital once again with an abscess in the tail bone area. After 4 abscesses (in the last year) the surgeon did tell us it is shrinking. The 2 tumors on Bill's liver are growing and they found a another small 4mm spot on or above the diaghram - could this be in the lung? We are now waiting to see a liver surgeon to see if they can possibly do a 4th surgery. If not then it is back to chemo.

Bill also ended up in the hospital this past weekend with blockage. I certainly hope that this is the only one he will suffer.

Keep fighting the beast! We will win!


((((HUGS))))

Sue

CherylHutch

Keep up the good fight!!
Give Bill a big old hug for me, Sue!! This fight is nasty! But it can be won!

That is horrible about the abscess. The thing with infection is, it does light up the PET scans just like cancer does... so when one has a history of cancer with a high potential for recurrence, it must be hard to figure out why the PET scans are lighting up, without doing a biopsy on every lit area.

If the liver surgeon says that it is possible to do another surgery, what are they planning on doing with the 4mm spot on or above the diaghram? Did they mention any potential treatment?

Huggggggs,

Cheryl

tootsie1

Oh, dear
Oh, dear. Poor Bill's had a lot to deal with. I hope he can get it all straight very soon! Give him a hug for me, and tell him to hug you right back!

*hugs*
Gail

CanadaSue

CherylHutch said:

Keep up the good fight!!
Give Bill a big old hug for me, Sue!! This fight is nasty! But it can be won!

That is horrible about the abscess. The thing with infection is, it does light up the PET scans just like cancer does... so when one has a history of cancer with a high potential for recurrence, it must be hard to figure out why the PET scans are lighting up, without doing a biopsy on every lit area.

If the liver surgeon says that it is possible to do another surgery, what are they planning on doing with the 4mm spot on or above the diaghram? Did they mention any potential treatment?

Huggggggs,

Cheryl

The fight
Cheryl,

They did tell us the tailbone area could be lit up from the abscess, but why the heck would you radiate someone if you are not sure! This really made me mad, because they were going to do 30 rad tratments - which means they could never do radiation again. So go ahead and do it, perhaps make him sick as well for nothing. If our onc had not suggested doing a biopsey, I would have insisted.

Hopefully we will be seeing the liver surgeon in the next couple of weeks, for a consult.
Our onc said we were not going to worry about the 4mm spot just yet, lets deal with the liver first. When they called Bill that they had set up the last ct-scan Bill asked if they were also going to do the CEA marker test (This marker has been right on the mark) So the nurse said she would do that as well. So when we were at the Onc's on Friday Bill asked the results, and she sheepishly said they ran a PSA I think that is what the prostrate blood test is, and she said it came back great.....Well it should have since they removed his prostrate last year along with the bladder.... I just give my head a shake at times - perhaps the nurses should read the charts once in a while.

I think, because Bill has been thru so much, and I think I have held it together pretty good so far, but it almost slipped on Sunday at the hospital. A nurse said to me "You must be so proud of your husband for the fight he is putting up". I don't know why but I wanted to slug her....... and all I could finally answer was "yes we are". Not that that was insensitive or anything but it really hit me the wrong way.

Hugs,

Sue

CanadaSue

tootsie1 said:

Oh, dear
Oh, dear. Poor Bill's had a lot to deal with. I hope he can get it all straight very soon! Give him a hug for me, and tell him to hug you right back!

*hugs*
Gail

Thanks,
Thanks Gail,

This has been a long fight so far, and we will keep on fighting this beast!


Hugs,

Sue

CherylHutch

CanadaSue said:

The fight
Cheryl,

They did tell us the tailbone area could be lit up from the abscess, but why the heck would you radiate someone if you are not sure! This really made me mad, because they were going to do 30 rad tratments - which means they could never do radiation again. So go ahead and do it, perhaps make him sick as well for nothing. If our onc had not suggested doing a biopsey, I would have insisted.

Hopefully we will be seeing the liver surgeon in the next couple of weeks, for a consult.
Our onc said we were not going to worry about the 4mm spot just yet, lets deal with the liver first. When they called Bill that they had set up the last ct-scan Bill asked if they were also going to do the CEA marker test (This marker has been right on the mark) So the nurse said she would do that as well. So when we were at the Onc's on Friday Bill asked the results, and she sheepishly said they ran a PSA I think that is what the prostrate blood test is, and she said it came back great.....Well it should have since they removed his prostrate last year along with the bladder.... I just give my head a shake at times - perhaps the nurses should read the charts once in a while.

I think, because Bill has been thru so much, and I think I have held it together pretty good so far, but it almost slipped on Sunday at the hospital. A nurse said to me "You must be so proud of your husband for the fight he is putting up". I don't know why but I wanted to slug her....... and all I could finally answer was "yes we are". Not that that was insensitive or anything but it really hit me the wrong way.

Hugs,

Sue

Geez Sue
I'd be po'd too! I think you should be proud of YOURSELF that you managed to not slug the nurse

At the same time, I would ask when he can now get a proper CEA test done? I'm sorry, I can't remember if you are close by the hospital you go to or if it requires a lot of travel. But all these things that are "slipping through the cracks" like the suggestion of radiation without checking what they were actually going to radiate, the missed CEA test, etc. .. I think you should document them, take them to your oncologist and say that these are not acceptable. What is going to be in place so stuff like this does not happen again?

I feel for you, my friend!!

Hugggggs,

Cheryl

CanadaSue

CherylHutch said:

Geez Sue
I'd be po'd too! I think you should be proud of YOURSELF that you managed to not slug the nurse

At the same time, I would ask when he can now get a proper CEA test done? I'm sorry, I can't remember if you are close by the hospital you go to or if it requires a lot of travel. But all these things that are "slipping through the cracks" like the suggestion of radiation without checking what they were actually going to radiate, the missed CEA test, etc. .. I think you should document them, take them to your oncologist and say that these are not acceptable. What is going to be in place so stuff like this does not happen again?

I feel for you, my friend!!

Hugggggs,

Cheryl

I know hellooooooo
There are just some days when I think enough is enough...... If I hear someone tell me one more time that they feel sorry for me, I might hit them. I do not want anyone to feel sorry for me, I want people to learn from this:

Get scanned

Don't take your loved ones or anyone for that matter for granted

Tell your loved ones' you love them everyday

Don't put off doing that traveling you have always said you wanted to do, but never found the time to do.

Take a few extra minutes to enjoy the sunrise or sunset.

I am sorry it took this journey for me to open my eyes to these things. I have learned that dust bunny's do not kill, and they aren't going anywhere - they will still be there in the next couple of days to clean. Family is so much more important!

Ok getting off my soap box now.......


((((HUGS)))

Sue

CherylHutch

CanadaSue said:

I know hellooooooo
There are just some days when I think enough is enough...... If I hear someone tell me one more time that they feel sorry for me, I might hit them. I do not want anyone to feel sorry for me, I want people to learn from this:

Get scanned

Don't take your loved ones or anyone for that matter for granted

Tell your loved ones' you love them everyday

Don't put off doing that traveling you have always said you wanted to do, but never found the time to do.

Take a few extra minutes to enjoy the sunrise or sunset.

I am sorry it took this journey for me to open my eyes to these things. I have learned that dust bunny's do not kill, and they aren't going anywhere - they will still be there in the next couple of days to clean. Family is so much more important!

Ok getting off my soap box now.......


((((HUGS)))

Sue

Soap Box!
No no no, Sue!! Please stay on the soap box!!! I think so many of us had forgotten what's important and it took this journey to remind us. But even on the journey, we tend to get wrapped up in treatments and appointments and scans and blood work and once again, our focus changes. We have to get it back to all those things you mentioned while on the soap box... and then some!!

I appreciate so many of the "little things" in life as big things now... and dust bunnies, heck, they are our household pets until the Dust Bunny Wrangler shows up and gets them out of the apartment

Huggggggs,

Cheryl