Chemo on thursday, really scared

LeeinLondon

Well chemo starts again in 2 days and part of me wants to catch the next train to Barcelona. This goddamn survival instinct keeps kicking in when what I really want is to end this horrible nightmare.

I'm a logical person and I don't know why Im bothering with chemo. It blows Waking up each day gives me no hope and little joy, I'm either in pain, or nauseous, or exhausted, or some combination of the 3. The unpleasant things outnumber the pleasant things by 20 to 1. Currently I'm soaked in sweat for no reason and have slept the day away so I can look forward to even a worse night's sleep.

I hate the term "courageous battle". There's nothing courageous about kneeling in front of the toilet.

Why would I want to draw this out? Why?

I just want to sleep.

chemosmoker

To chemo or not to chemo...that is the question...
Well Lee, it sounds like you KNOW what you want to do, and are afraid to DO it?
I will private message you now.
Want to leave the board open for others to share.
I am curious to see what people with experience with chemo will offer up too.
-Eric

paul61

It is a very difficult decision to make
Lee,

I have to say I understand where you are coming from. When I was going through chemotherapy I remember telling my wife one morning "if this is what the rest of my life is going be be, I would just as soon get it over with".

I was fortunate that my chemo ended after six cycles and through the grace of God, at the moment I am in remission.

I think one of the questions you have to ask yourself is "What are the benefits from more chemo?". There is the chance that additional chemo will provide more time to spend with Chantal. There is the potential that this particular chemo may actually make you feel better some of the time.

I am not sure if the medications that are going to be used this time are the same medications that were used in the past. If not, the side effects may not be the same. In my own personal case, after a few cycles, I learned to manage the side effects better and with the help of my oncologist we defined a plan that included additional medications and hydration that reduced the side effects significantly.

If I do have a recurrence and I have to go through chemo again I will sit down with my wife and define what we expect from chemo and under what circumstances we would decide that enough was enough. We would then talk to our oncologist and get his input to make sure our criteria was practical. Then at least I would not be going into a open ended chemo with no end in sight.

It is easy to be brave when you are not sick. People who suggest that they know what they would do in this situation just don't know what they would do until they actually get there.

I will be praying that this cycle of chemo has fewer side effects; that your improved nutrition and hydration with your feeding tube, and reduced pressure to eat, will make this more acceptable.

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
6/21/2010 CT Scan NED
3/14/2011 CT Scan NED

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

fredswilma

Hi Lee
I am probably not
Hi Lee
I am probably not qualified to answer your post as i do not have cancer, as you are aware my husband Mark has stage ivb cancer, i just wanted to let you know what a wife's view on how much is too much is (or my view) , my husband has always been my rock, he is my best friend, father of my children and very much the love of my life, we have been together for 17years this disease stinks and there are soo many more expletives that I could use to describe it, it has turned our world upside down, it has taken away a huge part of our future, we do not want it to take away the moment. When Mark decided to go ahead with another round of Chemo after so many discussions, you know yes/no yes/no we had to draw a line in the sand and say to here and no more, our line is that when the cure/care becomes harsher than the cancer itself then no more, I say we but ulitmately it was Mark's decision, this is where the wife's point of view comes in, I could not stand to watch Mark become sick and wasting away and the Chemo making him sicker with everyday, I could not stand to watch him not being able to enjoy his kids, or socialising, or golf or whitebaiting or fishing, or even a cold beer at the end of the day. I am hoping that when that time comes I will be strong enough to say yes Mark you have done enough (easy to say that now), I am not trying to tell you what you should or shouldn't do only you and Chantal can decide that, ultimately what I am trying to say is that this disease is going to rob you and Mark and so many more of your future's and no amount of screaming and blaming and blaspheming is going to fix it ( I do alot of that), nobody know's what is around the corner,I do know that when you only have a lifetime left the moment is more important than the lifetime.
Hope this is not just a ramble and that it makes some sort of sense to you, and hope your feeling a little better.
Ann

Donna70

fredswilma said:

Hi Lee
I am probably not
Hi Lee
I am probably not qualified to answer your post as i do not have cancer, as you are aware my husband Mark has stage ivb cancer, i just wanted to let you know what a wife's view on how much is too much is (or my view) , my husband has always been my rock, he is my best friend, father of my children and very much the love of my life, we have been together for 17years this disease stinks and there are soo many more expletives that I could use to describe it, it has turned our world upside down, it has taken away a huge part of our future, we do not want it to take away the moment. When Mark decided to go ahead with another round of Chemo after so many discussions, you know yes/no yes/no we had to draw a line in the sand and say to here and no more, our line is that when the cure/care becomes harsher than the cancer itself then no more, I say we but ulitmately it was Mark's decision, this is where the wife's point of view comes in, I could not stand to watch Mark become sick and wasting away and the Chemo making him sicker with everyday, I could not stand to watch him not being able to enjoy his kids, or socialising, or golf or whitebaiting or fishing, or even a cold beer at the end of the day. I am hoping that when that time comes I will be strong enough to say yes Mark you have done enough (easy to say that now), I am not trying to tell you what you should or shouldn't do only you and Chantal can decide that, ultimately what I am trying to say is that this disease is going to rob you and Mark and so many more of your future's and no amount of screaming and blaming and blaspheming is going to fix it ( I do alot of that), nobody know's what is around the corner,I do know that when you only have a lifetime left the moment is more important than the lifetime.
Hope this is not just a ramble and that it makes some sort of sense to you, and hope your feeling a little better.
Ann

Lee are you being properly medicated?
Hi Lee,
Knowing you are in Canada, are the drs and other medical people doing all that we down here in the States get? I was 65 and my oncologist decided to protect my kidneys to admit me for my chemo cycles. I hated going in but I received a lot of infusions, always had meds to prevent nausea and did not have it. Did have a lot of diarrhea and mouth sores till they gave me Acyclovir which cleared them up. That was my pre op protocol. So couldn't eat well in fact only liquids, ice cream and cream of wheat. So I am just wondering if you are getting the proper anti nausea meds, like Amend, the prednisone and here they give Ativan pre chemo infusion. I was Cisplatin and 5 FU and then post op received Taxotere, which was pretty rough. It is a rough road with proper meds and rougher if you are not adequately medicated. Saying all that, maybe you have been given all the proper meds and now you are thinking of quality of life issues. This is so personal only you can do the deciding. Your family loves you and wants the best for you. I will be praying that you feel better and some of this discomfort is relieved. take care,
Donna70

LeeinLondon

Donna70 said:

Lee are you being properly medicated?
Hi Lee,
Knowing you are in Canada, are the drs and other medical people doing all that we down here in the States get? I was 65 and my oncologist decided to protect my kidneys to admit me for my chemo cycles. I hated going in but I received a lot of infusions, always had meds to prevent nausea and did not have it. Did have a lot of diarrhea and mouth sores till they gave me Acyclovir which cleared them up. That was my pre op protocol. So couldn't eat well in fact only liquids, ice cream and cream of wheat. So I am just wondering if you are getting the proper anti nausea meds, like Amend, the prednisone and here they give Ativan pre chemo infusion. I was Cisplatin and 5 FU and then post op received Taxotere, which was pretty rough. It is a rough road with proper meds and rougher if you are not adequately medicated. Saying all that, maybe you have been given all the proper meds and now you are thinking of quality of life issues. This is so personal only you can do the deciding. Your family loves you and wants the best for you. I will be praying that you feel better and some of this discomfort is relieved. take care,
Donna70

Hi Donna
Hi Donna;

Yes, they are more than happy to pump me full of anti-nauseants. I'm now thinking quality of life. I just have nothing left to fight this with, nor do I want to drag out my discomfort. Thanks for writing.

chemosmoker

LeeinLondon said:

Hi Donna
Hi Donna;

Yes, they are more than happy to pump me full of anti-nauseants. I'm now thinking quality of life. I just have nothing left to fight this with, nor do I want to drag out my discomfort. Thanks for writing.

Perhaps.....
Lee, perhaps as your quality of life returns slowly over the next few weeks, and you gain weight and hydration in the same period, thanks to your newly installed feeding tube, you might feel like returning to the chemo at a later date. That is ALWAYS an option. None of the doors close, they are just propped shut until WE choose to reopen them when it's time.
Just a thought.

Sending waves of love and support,

-Eric

hopper52

chemosmoker said:

Perhaps.....
Lee, perhaps as your quality of life returns slowly over the next few weeks, and you gain weight and hydration in the same period, thanks to your newly installed feeding tube, you might feel like returning to the chemo at a later date. That is ALWAYS an option. None of the doors close, they are just propped shut until WE choose to reopen them when it's time.
Just a thought.

Sending waves of love and support,

-Eric

Eric's Right
Lee,

I feel for you, brother. I'm eight weeks out from my last chemo/radiation and am just now beginning to feel halfway normal (not sure if I'll ever feel "normal" again). When they found the infamous "suspicious node" on my CT scan, I don't know what I feared more......the fact of not being able to have surgery or having to do more chemo. Thankfully, the biopsy came back negative so surgery is still a go (for now).

I agree with Eric, you may want to defer any additional chemo until you feel up to it. Honestly, over the past eight weeks I questioned myself many times if I wanted to go through that again.

Still praying for you and hoping things will improve soon.

Michael Daniels (T3N0M0)
Brandon, FL

Unknown

This comment has been removed by the Moderator

Unknown

This comment has been removed by the Moderator

mrsbotch

Lee
I would love to e-mail with you privately Lee if possible so if you would like to please do so. I am 1/2 English as my mom is a WW11 bride. (1 years young on Saturday. Dad has passed away. She is from the midlands. Northhampton, a small village called Wolleston.

I know the craziness of the chemo and how you feel as my dear sweet husband Vince had all the crappy things you are having now



Barb

birdiequeen

LeeinLondon said:

Hi Donna
Hi Donna;

Yes, they are more than happy to pump me full of anti-nauseants. I'm now thinking quality of life. I just have nothing left to fight this with, nor do I want to drag out my discomfort. Thanks for writing.

May your treatment tomorrow
May your treatment tomorrow bring you relief and add to your quality of life. May you avoid all the things you have feared this time around.

Take Care!!

Unknown

mrsbotch said:

Lee
I would love to e-mail with you privately Lee if possible so if you would like to please do so. I am 1/2 English as my mom is a WW11 bride. (1 years young on Saturday. Dad has passed away. She is from the midlands. Northhampton, a small village called Wolleston.

I know the craziness of the chemo and how you feel as my dear sweet husband Vince had all the crappy things you are having now



Barb

This comment has been removed by the Moderator

jojoshort

We are all pulling for you both
Hi Lee,
That's the thing with Stage IV's, there's no crystal ball. I can only suggest that you listen to your body and do what you know you need to do--either way.
Some suggestions here are fantastic--perhaps this chemo is different. Steve had two different types, and he didn't experience significant side effects until the 4th session of one, but the second type was harder hence his decision to cut it at two sessions.
What kind of chemo are you doing this time?
I will be keeping you and Chantal in my thoughts today as you take on another day, one day at a time.
Jo-Ann

Wpturner05

Hello Lee,
I can only
Hello Lee,

I can only imagine your fear. Maybe this chemo will treat you differently, with minimal side effects, yet desired quantity . . .
My husband is on a chemo break because of side effects and blood counts. He has an MRI of the abdomen next Thursday which will determine if he can have the other lobe of his liver infused with radiation (the right was done 8/3). After the other lobe would be more chemo . . . So scary to start that up again, I dread it.
Grab your wife's hand and hold tight . . .

Thinking of you guys today.

Wpturner05

Wpturner05 said:

Hello Lee,
I can only
Hello Lee,

I can only imagine your fear. Maybe this chemo will treat you differently, with minimal side effects, yet desired quantity . . .
My husband is on a chemo break because of side effects and blood counts. He has an MRI of the abdomen next Thursday which will determine if he can have the other lobe of his liver infused with radiation (the right was done 8/3). After the other lobe would be more chemo . . . So scary to start that up again, I dread it.
Grab your wife's hand and hold tight . . .

Thinking of you guys today.

I wanted to say It in my
I wanted to say It in my last post, but did not have the guts. I am going to . . .

Being strong can mean knowing when to stop . . .

I always hate hearing the words keep fighting, because at this stage it seems the only thing you are fighting is YOURSELF.

chemosmoker

Wpturner05 said:

I wanted to say It in my
I wanted to say It in my last post, but did not have the guts. I am going to . . .

Being strong can mean knowing when to stop . . .

I always hate hearing the words keep fighting, because at this stage it seems the only thing you are fighting is YOURSELF.

Glad you said it...
Very glad you said it. I think that was well said.
There is much more to this battle than just chemo.
People make the analogy so often, but you know, if my diabetic friends got as sick from their insulin as many here do from 'fighting' their chemo, I mean cancer, there would be a lot more diabetics choosing NOT to take their insulin. I often notice that there are two battles going on. One is with our cancer, the other is if you start chemo, and that becomes another battle all its own from my point of view.

sangora

chemosmoker said:

Glad you said it...
Very glad you said it. I think that was well said.
There is much more to this battle than just chemo.
People make the analogy so often, but you know, if my diabetic friends got as sick from their insulin as many here do from 'fighting' their chemo, I mean cancer, there would be a lot more diabetics choosing NOT to take their insulin. I often notice that there are two battles going on. One is with our cancer, the other is if you start chemo, and that becomes another battle all its own from my point of view.

chemosmoker absolutely correct
I think one of the things that wears us down is that we do fight multiple battles. I have been cycling on Xeloda since January 2011 with only a 2 week break in June. I am noticing that the drug is really pulling me down now. The first 5 months I hardly was aware of taking it. Now the fatigue,upset stomach, general gastric upset is taking it's toll. I have a CT scan next tuesday and see the oncologist thursday. I am feeling I need a break but what is that going to do with my cancer "fight". Does this mean I am giving in? All these questions and as I live alone, I really don't have many sounding boards. My family is surportive but from a distance. Thank you William for your comment on stopping does not equal a sin. I know that but to hear someone else say it helps. If the CT is clean as they have been over the past year, I am going to push for a break to get myself back together. I am thankful for this site. Sam

LeeinLondon

sangora said:

chemosmoker absolutely correct
I think one of the things that wears us down is that we do fight multiple battles. I have been cycling on Xeloda since January 2011 with only a 2 week break in June. I am noticing that the drug is really pulling me down now. The first 5 months I hardly was aware of taking it. Now the fatigue,upset stomach, general gastric upset is taking it's toll. I have a CT scan next tuesday and see the oncologist thursday. I am feeling I need a break but what is that going to do with my cancer "fight". Does this mean I am giving in? All these questions and as I live alone, I really don't have many sounding boards. My family is surportive but from a distance. Thank you William for your comment on stopping does not equal a sin. I know that but to hear someone else say it helps. If the CT is clean as they have been over the past year, I am going to push for a break to get myself back together. I am thankful for this site. Sam

Follow-up
Well we met with the oncology team and told them of our decision. Then they shared the result of my latest CT scan from 3 weeks ago - more tumours, more growth and evidence of spread to my spleen.

Not at all good news. Being referred to a palliative care team.

Sangora its a big decision that shouldn't be taken lightly, all you can do is listen to the doctors, research what you can, and play the odds just like any other major decision.

best to all,
Lee

TerryV

LeeinLondon said:

Follow-up
Well we met with the oncology team and told them of our decision. Then they shared the result of my latest CT scan from 3 weeks ago - more tumours, more growth and evidence of spread to my spleen.

Not at all good news. Being referred to a palliative care team.

Sangora its a big decision that shouldn't be taken lightly, all you can do is listen to the doctors, research what you can, and play the odds just like any other major decision.

best to all,
Lee

What to say....
Lee and Chantel,

You are in our thoughts and prayers!

Terry

LeeinLondon

Thanks everyone
I received some private messages from several folks and I really appreciate you taking the time to share your thoughts with me. I stand by my decision and forward I go. I'm sorry but I just don't have it in me to type detailed responses to you all, but rest assured they were all read...several times.

Having a partner that has been so involved in all this really helps, because I know that chantal won't mislead me or tell me what I want to hear. I think it would be so much more difficult if your spouse was totally against your decision which I can see being common.

This isn't suicide. I have no urge to die. I want to live, and to me living is waking most days with some purpose, feeling energetic and upbeat, and looking forward to the little and big milestones in your life (mmmm! BBQ tonight!).. without those things, that's not life, that's existence.

When we left the hospital yesterday wherein I would have normally stayed for an IV chemo session, a chill ran down my spine with relief that I didn't have to go through with it. I think it's very telling that chemo scares me more than death.

You are special people.
Lee