Coulda Woulda Shoulda

MandiePandie

Feeling a bit bummed lately. As my dad nears the end of his 6 rounds of FOLFOX, its hard not to feel overwhelming anxiety about whats next.

He has had such a hard time on the chemo, even took an extra week break before round 5. This experience has brought out a side of him that just makes me so sad. Its hard not to get too judgemental when he is complaining of nausea... he refuses to try ginger, he doesnt like it; he refuses to eat small frequent meals even though it clearly makes his nausea worse when he doesnt eat, he doesnt drink nearly enough because he only likes cold water and the cold sensitivity means he can only takes tiny occasional sips,  forget electrolye drinks, he doesnt like them, he refuses to go in for the IV hydration and IV zofran his doctor has ordered for him, he will do it only on the disconnect day and even though it helps he just doesnt like going back to the hospital (even though its only a 5 min drive away) and he doesnt like getting the IV in his arm and sitting there for the infusion. He took this extra week off and was feeling good but already I noticed he is becomming anxious and upset again as he nears round 5. I know chemo sucks, I know from all of you people who go through it, but part of me just wants to ask him why he cant be a little more tough. I mean, im 6 months pregnant and have thrown up every single day, multiple times a day for the past  5 months, I constantly feel so sick, I can hardly eat, and I know its not the same as chemo at all but he hasnt even thrown up once! I just wish he wouldnt be so defeated by nausea. He even said he wanted to stop chemo after round 4 even though they already reduced his dose!

He complains and worries that he "doesnt eat for 5 days", the doctor finally had to tell him that he wasnt going to starve. Ive told him time and time again that people fast for weeks sometimes and as long as he keeps up with fluids that he will be fine, but hes just not used to not feeling well. 

It feels like such an insult when I post in groups asking for help and tips and spend so much time researching for him and giving him suggestions that other people make only for him to just shoot it all down. On top of it all, now the worry of if the chemo has even worked is setting in. I know its no use in worrying about something that hasnt happened yet, but im having a real hard time trying to feel that I am not letting him down. I am the one who first suggested the 6 months instead of 12, a second oncologist agreed saying that it would be best to do 6 months to long term problems and no benefit would come from doing more, but the oncologist who is actually treating him doesnt agree and wanted 12 as its more established. His oncologist also refuses to entertain anything other than standard treatment... Ive read a lot of about adding in metformin, even a statin, to help the chemo work better but since its not standard treatment and only supported by some studies its all a no from his oncologist. I just fear that because dad already cant handle chemo, maybe we arent doing enough and will regret it in the future. 

Just a bunch of complaints and worries I guess. I wish my father had the strenth that you all have, I hope he is able to channel that and finish these next 2 rounds. 

worriedson714

I know how hard this is

            Your dad and my dad my actually be twins right down to only willing to drink cold water cause this is exactly how my dad's first chemo went . Now that my dad is looking at more chemo I'm worried it's going to happen again with him I know what your going threw . The fear that your not doing enough the fear that your dad seems to be changing right before your eyes . The what if's that came with it for me it's the what if my dad gives up what if he gets to tried of treatment ? So you want to spend every moment managing his treatment for him cause it doesn't seem like your dad is willing to . Then you add to all this the trouble with the oncologist which I have dealt with to our oncologist still says my dad refused treatment cause my dad was worried and wanting to do things his way . To the point where the oncologist thought my dad wanted hospice which he doesn't but my dad's attitude lead him to jump to that . But this isn't about me or my dad my advice to you and I know it's not easy cause I can't do it either most days . 

      Take the cancer away focus on your relationship with your dad focus on things that make your dad happy on the days I can manage to do that my old dad comes back . I just think our dads get tired of the appointments the blood draws (my dad hates those to ) the doctors telling them what to do what to eat . Sometimes it's our jobs as caregivers and there childern to show them that even though it's bad there's still more to life then the cancer and all the stuff that goes with them . There's a song that comes to mind that says " sometimes darkness can show you the light " sometimes it's our jobs to show them there is still " light " . And if we can do that then that can give them the strength to get threw this cause it gives them something to fight for . 

        I know I sound like a hallmark card and I know I mad it sound a whole lot easier then it is but for me and my dad it helps my dad wants to start fishing again which I take as a very good thing . I hope I managed to make some sense cause your not alone you shouldn't feel guility I been there I am still there alot of days . 

 

P.S chocolate milk whole milk with vitamin d has gotten my dad threw alot yes I know the sugar but the good thing is my dad likes it and while it has it's bad has some good in there to try to find something like that . 

Lovekitties

under the tongue meds for nausea

There is a med which can be perscribed that is placed under the tongue...that might work or at least help.  Also if he can eat, perhaps ginger snap cookies or ginger lollipops.

It is tough being a care giver.  Just remember there is a difference between your expected happy event and his possible outcome.  Expectations make all the difference in attitude.

Wishing you both the best.

Marie who loves kitties

Kazenmax

God love ya. It's hard to be

God love ya. It's hard to be a caregiver. It's also hard to receive care. Either way, you are a good daughter. I know it's hard but try to realize your limitations. All this falls on him. He has to do the work. You can only support. I honestly don't know how my husband was able to bear all my BS during my treatment!

the ginger snaps are a good idea. Green tea and ginger snaps helped me a lot. 
I also found that on the days where I felt decent, if I was able to get outside for some fresh air, that helped.

Hang in there!

k

MandiePandie

worriedson714 said:

I know how hard this is

            Your dad and my dad my actually be twins right down to only willing to drink cold water cause this is exactly how my dad's first chemo went . Now that my dad is looking at more chemo I'm worried it's going to happen again with him I know what your going threw . The fear that your not doing enough the fear that your dad seems to be changing right before your eyes . The what if's that came with it for me it's the what if my dad gives up what if he gets to tried of treatment ? So you want to spend every moment managing his treatment for him cause it doesn't seem like your dad is willing to . Then you add to all this the trouble with the oncologist which I have dealt with to our oncologist still says my dad refused treatment cause my dad was worried and wanting to do things his way . To the point where the oncologist thought my dad wanted hospice which he doesn't but my dad's attitude lead him to jump to that . But this isn't about me or my dad my advice to you and I know it's not easy cause I can't do it either most days . 

      Take the cancer away focus on your relationship with your dad focus on things that make your dad happy on the days I can manage to do that my old dad comes back . I just think our dads get tired of the appointments the blood draws (my dad hates those to ) the doctors telling them what to do what to eat . Sometimes it's our jobs as caregivers and there childern to show them that even though it's bad there's still more to life then the cancer and all the stuff that goes with them . There's a song that comes to mind that says " sometimes darkness can show you the light " sometimes it's our jobs to show them there is still " light " . And if we can do that then that can give them the strength to get threw this cause it gives them something to fight for . 

        I know I sound like a hallmark card and I know I mad it sound a whole lot easier then it is but for me and my dad it helps my dad wants to start fishing again which I take as a very good thing . I hope I managed to make some sense cause your not alone you shouldn't feel guility I been there I am still there alot of days . 

 

P.S chocolate milk whole milk with vitamin d has gotten my dad threw alot yes I know the sugar but the good thing is my dad likes it and while it has it's bad has some good in there to try to find something like that . 

The fear is real. I'll

The fear is real. I'll suggest some chocolate milk  

MandiePandie

Lovekitties said:

under the tongue meds for nausea

There is a med which can be perscribed that is placed under the tongue...that might work or at least help.  Also if he can eat, perhaps ginger snap cookies or ginger lollipops.

It is tough being a care giver.  Just remember there is a difference between your expected happy event and his possible outcome.  Expectations make all the difference in attitude.

Wishing you both the best.

Marie who loves kitties

Unfortunately it all falls

Unfortunately it all falls into the category of doesn't work/don't like it. Frustrating although I do know it's not his fault, just the way he is. I do want to work on improving my attitud. Thank you for the well wishes. 

MandiePandie

Kazenmax said:

God love ya. It's hard to be

God love ya. It's hard to be a caregiver. It's also hard to receive care. Either way, you are a good daughter. I know it's hard but try to realize your limitations. All this falls on him. He has to do the work. You can only support. I honestly don't know how my husband was able to bear all my BS during my treatment!

the ginger snaps are a good idea. Green tea and ginger snaps helped me a lot. 
I also found that on the days where I felt decent, if I was able to get outside for some fresh air, that helped.

Hang in there!

k

It is hard but surely not as

It is hard but surely not as difficult as being the patient. I suppose a lot of the frustration is just about the situation in general. Dad mentioned "why me?" The other day and I felt the hurt and anger.  Thank you for the suggestions 

beaumontdave

If he's having depression

If he's having depression regularly, or bouts of anxiety, that should be addressed, if he's willing. When I needed it most, Xanax really made things bearable, without my becoming dependent on it at all...............................................................Dave

SarahC_2020

Hopeful words for your dad...

During chemo, I had a lot of chicken noodle soup when I didn't feel good.  It helped get some calories in me; even if it was just the broth sometimes.  I love cold water too so drinking warmer than luke warm water was a bummer.  I drank G2 instead, it had flavor and electrolytes; offset the fact that it wasn't cold.  I've had the why me conversation as well with myself though, I try not to download on people helping me.  But there were a couple of times where I was a bit overwhelmed and the BS words came out.  I think when you deal with true suffering for the first time, you are like, why? I can tell you now, I don't like anyone suffering and very sensitive to seeing it. 

I watched a lot of comedians on Netflix, Jim Gaffigan is a good one.  Let him know we know how he feels.  We are living his suffering.  He's his number one advocate and only he can alleviate his suffering that means taking some control and deciding what he likes.  It's temporary though, just when you can't look at chemo again, it's over.  I likened it to having an appointment to get hit by a car, then waiting a week, get better and then go to the appointment to get hit by a car.  I had anxiety the day before too, it felt mental to keep punishing myself, but chemo was a count down and when that last one passed; I was like, damn I did it.  I had eight treaments that lasted through February and have just finished my radiation treatments about a month ago.  I will get an MRI in June to find out where I'm at.  I think COVID made it especially hard because there was nothing and nowhere to go to get your mind off the treatments.  Let him know he's stronger than he thinks and he's got this, it's up to him to take the cure and tell it, cure you suck, but you are temporary, and I can handle you because I'm worth it.

(Have to laugh, it's my first post and my picture is sideways; I guess that's how I feel sometimes. LOL)

CSN_Bill

SarahC_2020 said:

Hopeful words for your dad...

During chemo, I had a lot of chicken noodle soup when I didn't feel good.  It helped get some calories in me; even if it was just the broth sometimes.  I love cold water too so drinking warmer than luke warm water was a bummer.  I drank G2 instead, it had flavor and electrolytes; offset the fact that it wasn't cold.  I've had the why me conversation as well with myself though, I try not to download on people helping me.  But there were a couple of times where I was a bit overwhelmed and the BS words came out.  I think when you deal with true suffering for the first time, you are like, why? I can tell you now, I don't like anyone suffering and very sensitive to seeing it. 

I watched a lot of comedians on Netflix, Jim Gaffigan is a good one.  Let him know we know how he feels.  We are living his suffering.  He's his number one advocate and only he can alleviate his suffering that means taking some control and deciding what he likes.  It's temporary though, just when you can't look at chemo again, it's over.  I likened it to having an appointment to get hit by a car, then waiting a week, get better and then go to the appointment to get hit by a car.  I had anxiety the day before too, it felt mental to keep punishing myself, but chemo was a count down and when that last one passed; I was like, damn I did it.  I had eight treaments that lasted through February and have just finished my radiation treatments about a month ago.  I will get an MRI in June to find out where I'm at.  I think COVID made it especially hard because there was nothing and nowhere to go to get your mind off the treatments.  Let him know he's stronger than he thinks and he's got this, it's up to him to take the cure and tell it, cure you suck, but you are temporary, and I can handle you because I'm worth it.

(Have to laugh, it's my first post and my picture is sideways; I guess that's how I feel sometimes. LOL)

Picture Fixed

Welcome SarahC!

Your attitude is contagious and we welcome you to the boards. As you can see, we fixed your picture. Please let us know if we can help again.  

 

Bill

CSN Support Team