I am so sick of waiting

Mazj

Last October we saw that the tumour markers appeared to be rising after 6 free years. So we waited 3 months for the next check and then the one after. Then we waited for CT results, PET results, oncology appointments, blood tests, laparoscopy surgery, liver surgeon appointments, chemo to start, chemo to stop, liver fluid to start expanding, liver fluid to continue to expand, local doctor appointment, and finally today the aspiration of the fluid to relieve the pressure symptoms and the consequent swollen legs.

But no, it was not to be. After reviewing the films the radiologist wants to treat Brian as an inpatient and do the aspiration under CT guidance and have a much longer follow up in the hospital. So we wait until Thursday. Brian can only walk a few steps now and the leg is painful. The Dr said the fluid is putting enormous pressure on his liver and impacting fluid flow around his body.It was so disheartening for Brian who thought he would get back a little normality and mobility, but on the other hand I am secretly pleased that it will all happen under much safer and more controlled conditions, because although the procedure maybe easy the response is unknown.

We were playing golf in July - it all seems so long ago...

Bugger, bugger, bugger!

Sorry for the whinge, but I have discovered this is a soft place to fall and safe place to vent.

Thanks for being there,

Marilyn

Freida

Can't say much except I'm
Can't say much except I'm sorry and sending cyber hugs your way. We are new to this and also waiting - in our case for information about staging and appointments and a plan of action for what our next step is. I am exhausted after Just 3 weeks worrying about all this - I can't imagine your feelings after years. I hope it all goes well. Hugs to you and your husband.

Freida
(are you English by any chance? The only person I have ever heard use bugger as a swear word is my Mum, and occasionally myself. Never heard it from anyone in the US. Maybe I should use it more often right now instead crying so much - bugger bugger bugger)

paul61

I am so sorry things are not going well for Brian
Marilyn,

I can understand your frustration. It is very difficult to watch someone you love suffering. I remember when I was originally diagnosed; it seemed one appointment just led to another test followed by another appointment, followed by another procedure, and on and on and on......

I am sorry you are back to waiting again. I am sure Brian must be frustrated because I am sure he was hoping to be feeling better by now.

I think you are right though; much better to have things done in the hospital with all the right equipment and follow up. I wish there were something upbeat and positive I could say. I guess all I can say is I understand.

You and Brian will be in my prayers.

Best Regards,

Paul Adams
McCormick, South Carolina

DX 10/22/2009 T2N1M0 Stage IIB
12/03/2009 Ivor Lewis
2/8 through 6/14/2010 Adjuvant Chemo Cisplatin, Epirubicin, 5 FU
Two year survivor

Life may not be the party we hoped for, but while we are here we might as well dance!

chemosmoker

6 YEARS scars the crap out of me hearing this news....
Marilyn,

Wow you know I think of, thought of, AM thinking.... 4 to 6 months and what to do with MY little time left. Reading six YEARS and now YOU and BRIAN are back where I am today with fluid in my legs building to edema, abdomen filling and not sure how long my liver will continue to keep dealing with it and draining me back to 'Eric' weight and not the 10+ #'s I get of it on my abdomen, before I go back to gaining weight and get scared. Again.

I got to the beach and get sand in my toes I have not long, and the fear is INTENSE...

God I wish I knew what to say to you after that long and now waiting to find out what t do to treat this EC AGAIN. So I feel like I would just never be free of the battle.

You see, for me, I daily think about MY decision for NO chemo, NO trying anything, nothing, I have to say "Well, was that a good decision?" Not THAT much doubt really, but still I think it.

Hearing 6 years later it's same for you as me now 6 months later, I will take the time I am enjoying and the fluid.

Maybe I am being too blunt for what everyone expects from Eric the optimism man, but like William says, I have to learn to dance IN the rain, not make it not rain or avoid raindrops here.

I love you all. PLEASE keep us posted. Let us know what the scans DO show, as I am sitting on my hands, riding along with you two as I have reading your posts for MONTHS now on here.
I learn from every different new and other form of treatment,

Eric

sandy1943

Marylyn, We are so glad that
Marylyn, We are so glad that we are here for you to vent on. We all understand what you are going through.
What a shock after six years!. It has been four years since my diagnosis and I am so thankful for every good report. I go today for results on my bloodwork.I pray all is still well.
Praying for Brian as he fights the beast once again.
WE're here for you,
Sandra

megmacmd

chemosmoker said:

6 YEARS scars the crap out of me hearing this news....
Marilyn,

Wow you know I think of, thought of, AM thinking.... 4 to 6 months and what to do with MY little time left. Reading six YEARS and now YOU and BRIAN are back where I am today with fluid in my legs building to edema, abdomen filling and not sure how long my liver will continue to keep dealing with it and draining me back to 'Eric' weight and not the 10+ #'s I get of it on my abdomen, before I go back to gaining weight and get scared. Again.

I got to the beach and get sand in my toes I have not long, and the fear is INTENSE...

God I wish I knew what to say to you after that long and now waiting to find out what t do to treat this EC AGAIN. So I feel like I would just never be free of the battle.

You see, for me, I daily think about MY decision for NO chemo, NO trying anything, nothing, I have to say "Well, was that a good decision?" Not THAT much doubt really, but still I think it.

Hearing 6 years later it's same for you as me now 6 months later, I will take the time I am enjoying and the fluid.

Maybe I am being too blunt for what everyone expects from Eric the optimism man, but like William says, I have to learn to dance IN the rain, not make it not rain or avoid raindrops here.

I love you all. PLEASE keep us posted. Let us know what the scans DO show, as I am sitting on my hands, riding along with you two as I have reading your posts for MONTHS now on here.
I learn from every different new and other form of treatment,

Eric

Waiting Game
Glad you got to thebeach eric! As I say nothing like the beach to wash away your fears can be tranquil or very intense like our last hurricane.EC is like that. No cancer is good but some is better and more fully researched and understood.I hate being a doctor and knowing so much Ive seen what cancer does and it is not pretty.Your posts are very realistic not to be a pessimist yes we are all statistic some do great others dont ony GOD knows our course.I appreciate your candor I too agonized and still am somewhat about continuing chemo to go through all that and find myself back to ground zero seems very pointess andfrustrating and unnessesary pain.I pretty much decided no matter what the next scan in december (waiting) shows to just take my chances.This is a very insidious tricky disease not as straight forward as others .I like diagnosis treatment cure plans that isnt going to happen too much with this diseaese its a crap shoot.So Im with you no chemo if the end is the same I can currently enjoy a fairly good quality of life visit with friends and children work.I do soo miss eating even off chemo my appetite hasnt returned still get nauseous all the time and the pain that comes with eating is not worth it at least little bites of my favorites are tolerable and I can taste again although not quite the same and the damn numb feet and finger tips is realy annoying and getting worse with the colder weather.Coming home over the bridge is always breathtaking today it was overcast 65 but birds still swooping.Get home to my little dog CC and her excitement to see me and the blue heron sitting on theend of the dock is always reassuring.I always cry when I pass the Maryland and virginia pilot stations and see all the merchants ships waiting to go into port .My husband was a Merchant Marine Engineer for25 years then he retired and worked for maryland pilots association (they take the port engineers outto thewaiting ships to go up the chesapeake bay to whatever port they are headed.AScites (fluid build up from liver invovement) is the worse next to plueral effussions(fluid in the lungs) my mom and sisterboth had drain in that we could drain at home to relieve the pressure to mae them a little more comfortabe.I dread that scenerio wish there was an easier way to go .Noone really tals about the end on here ike you do most are just fighting to live and be cured Once again my thought are with you and especialy Michelle whom I know must be ragged by now I hope she can have a chance to not think occassionaly and just enjoy living pretend for a moment none of this is really happening. Afterward it all seems so sureal I thinkthats the bodies way of protecting us in the meantime hope the pain meds are working well my mom dadand sister were never in agonizing pain just coulnt get comfortableHope you still have some more bech days left. Dont know how you are coping without screaming but you probably are internally.I prefer quick deaths like my husband no decisions or agnozing just over and done with in an hour then the stretches of sheer emptiness and loneliness wishing I could have had at least a chance to say some last things .Oh well very unseasonablly warm kayakers are out.I miss kayaking the most got to go a few times this summer with a friend but cant go out alone anymore especially with the cold water lifting things is hard have lost a lot of strength. Down to 140 which I needed to lose weight but not this way after 50 pounds off all my diabetes and hypertension meds Have a greatday keep posting Meg

megmacmd

chemosmoker said:

6 YEARS scars the crap out of me hearing this news....
Marilyn,

Wow you know I think of, thought of, AM thinking.... 4 to 6 months and what to do with MY little time left. Reading six YEARS and now YOU and BRIAN are back where I am today with fluid in my legs building to edema, abdomen filling and not sure how long my liver will continue to keep dealing with it and draining me back to 'Eric' weight and not the 10+ #'s I get of it on my abdomen, before I go back to gaining weight and get scared. Again.

I got to the beach and get sand in my toes I have not long, and the fear is INTENSE...

God I wish I knew what to say to you after that long and now waiting to find out what t do to treat this EC AGAIN. So I feel like I would just never be free of the battle.

You see, for me, I daily think about MY decision for NO chemo, NO trying anything, nothing, I have to say "Well, was that a good decision?" Not THAT much doubt really, but still I think it.

Hearing 6 years later it's same for you as me now 6 months later, I will take the time I am enjoying and the fluid.

Maybe I am being too blunt for what everyone expects from Eric the optimism man, but like William says, I have to learn to dance IN the rain, not make it not rain or avoid raindrops here.

I love you all. PLEASE keep us posted. Let us know what the scans DO show, as I am sitting on my hands, riding along with you two as I have reading your posts for MONTHS now on here.
I learn from every different new and other form of treatment,

Eric

Waiting Game
Glad you got to thebeach eric! As I say nothing like the beach to wash away your fears can be tranquil or very intense like our last hurricane.EC is like that. No cancer is good but some is better and more fully researched and understood.I hate being a doctor and knowing so much Ive seen what cancer does and it is not pretty.Your posts are very realistic not to be a pessimist yes we are all statistic some do great others dont ony GOD knows our course.I appreciate your candor I too agonized and still am somewhat about continuing chemo to go through all that and find myself back to ground zero seems very pointess andfrustrating and unnessesary pain.I pretty much decided no matter what the next scan in december (waiting) shows to just take my chances.This is a very insidious tricky disease not as straight forward as others .I like diagnosis treatment cure plans that isnt going to happen too much with this diseaese its a crap shoot.So Im with you no chemo if the end is the same I can currently enjoy a fairly good quality of life visit with friends and children work.I do soo miss eating even off chemo my appetite hasnt returned still get nauseous all the time and the pain that comes with eating is not worth it at least little bites of my favorites are tolerable and I can taste again although not quite the same and the damn numb feet and finger tips is realy annoying and getting worse with the colder weather.Coming home over the bridge is always breathtaking today it was overcast 65 but birds still swooping.Get home to my little dog CC and her excitement to see me and the blue heron sitting on theend of the dock is always reassuring.I always cry when I pass the Maryland and virginia pilot stations and see all the merchants ships waiting to go into port .My husband was a Merchant Marine Engineer for25 years then he retired and worked for maryland pilots association (they take the port engineers outto thewaiting ships to go up the chesapeake bay to whatever port they are headed.AScites (fluid build up from liver invovement) is the worse next to plueral effussions(fluid in the lungs) my mom and sisterboth had drain in that we could drain at home to relieve the pressure to mae them a little more comfortabe.I dread that scenerio wish there was an easier way to go .Noone really tals about the end on here ike you do most are just fighting to live and be cured Once again my thought are with you and especialy Michelle whom I know must be ragged by now I hope she can have a chance to not think occassionaly and just enjoy living pretend for a moment none of this is really happening. Afterward it all seems so sureal I thinkthats the bodies way of protecting us in the meantime hope the pain meds are working well my mom dadand sister were never in agonizing pain just coulnt get comfortableHope you still have some more bech days left. Dont know how you are coping without screaming but you probably are internally.I prefer quick deaths like my husband no decisions or agnozing just over and done with in an hour then the stretches of sheer emptiness and loneliness wishing I could have had at least a chance to say some last things .Oh well very unseasonablly warm kayakers are out.I miss kayaking the most got to go a few times this summer with a friend but cant go out alone anymore especially with the cold water lifting things is hard have lost a lot of strength. Down to 140 which I needed to lose weight but not this way after 50 pounds off all my diabetes and hypertension meds Have a greatday keep posting Meg

megmacmd

Waiting
That is really unfair for life to trick you this way Scream all you need and want to you deserve totreat yourself. What a very unpretictable mean disease this is. I hope all goes well in the hospital. A family joke is always people get sick in hospitals(you would have to understand as doctors ourselves we know the ins and outs of hospitals) never pretty from the adult end. But mostly great from the nursery end of thingsmy specialty. The reason I didnt go into adult medicine was people like me like the happy fun end of things births and cures which we get alot of in pediatrics makes one believe every day in our higher power that has a plan we are not privy to. My thoughts and prayers are with you hope all goes well. My sister and mom both had drains in the end we could drain at home to give them reief from the ascites(fluid buidup from liver involvement)AFter 6 years you wouldthink you had it licked my mom had recurrent breast cancer after 20 years still lived another 5. Cancer is so deceiving and unforgiving at times Dont know what else to say except best of luck hope you have great nurses they really make the hospital run and can make or break a good experience Great doctors are good but nurses and great caretakers are the key Meg

megmacmd

Freida said:

Can't say much except I'm
Can't say much except I'm sorry and sending cyber hugs your way. We are new to this and also waiting - in our case for information about staging and appointments and a plan of action for what our next step is. I am exhausted after Just 3 weeks worrying about all this - I can't imagine your feelings after years. I hope it all goes well. Hugs to you and your husband.

Freida
(are you English by any chance? The only person I have ever heard use bugger as a swear word is my Mum, and occasionally myself. Never heard it from anyone in the US. Maybe I should use it more often right now instead crying so much - bugger bugger bugger)

Bugger
So excitedto see that word my family is from newengland and canada and we use bugger and I always called my mum mum,Sorry you are on this web site but glad you are comic reief is what its all about cant change or control anything but how we think and react to lifes little surprises For me EC has opened my eyes wide to another realm of life I would rather have ignored but is staring me in the face as stage 4a or 3b they can never decide same thing inoperable and unpredictable but I have chosen to just live and not let it totally consume me although that can be very difficult when going to the doctor and hospital and tests 2months off of doctor apt and just getting to be the doctor has lulled me into denial I will face the reality of my 4th pet scan in december and go from there best toyou and yours happy returns of the day Meg