The Colon Club

I know I don’t have the right to be mad. I’m not the one going through chemo but I be been there whenever called. I get the phone calls the messages that just tear me apart because I can’t help, but I’m angry. My sister finished her first round of chemo and then decided she doesn’t want to do any more because she doesn’t want to be sick. She doesn’t want to be nauseous for 3 more months. She just wants to do chemoradiation now only. She’s stage 3A. She’s only 48 years old. She’s only a year younger than me and what the hell. I’m mad at her for not wanting to fight. I’m mad that when I told her I love her and want her to be here that she ignored me. I’m just mad. I know it’s her choice but it’s not fair.

Do you mean she’s dropping the Oxaliplatin and only doing Xeloda? Some people drop it early due to adverse effects.

Carboxo, being mad at your sister is not fair.
She needs your love and compassion.
She is a grown up and can decide what's best for her.

I disagree about it not being fair to be angry. She has a right to her feelings too, those aren't invalid. I imagine it's hard to be the family member in this journey. What wouldn't be fair would be venting to her sister about how angry she is currently. This is a great place to vent about how shitty things can be sometimes.

Process your feelings, find a way to support your sister in her decision. In the end, it's all you can do.

Carboxo, Sounds like you really love your sister. It is good to vent your feelings.
When my wife and I were frustrated with our kids a wise priest advised us to “Talk to God more about them, instead of talking to our kids about God.”
We can’t control what others do and feel. But prayers can work. Pray for your sister and be there for her.

And if you all are ready, this forum can provide some good insights and information.

Life isn’t fair.

Your sister doesn’t owe it to you to put herself through chemo. Your love and support should not be dependent upon her choosing treatment you approve of.

Not one of us is going to beat the clock. The only guarantee in life is that we are all going to die. You have an opportunity to love on your sister, make memories, and leave nothing unsaid.

I know I don’t have a right to want her to do this. I know it’s all her choice. But she and I are close. We are number 6 and 7. My mom and dad had 7 kids. There is a huge age gap between she and I and the other 5.
I just want her to be here. The other thing is she is a cancer scientist. I am a radiologic technologist and have been in this field for 20 years. So having this knowledge is one of the hardest things around. I needed to vent and I knew this was the only place I could where either right or wrong I could. She knows about this group she just isn’t ready herself to be on it. But she asks me about it. I give her the hints from here the suggestions.
But it doesn’t change the fact that I am still mad at her and I am worried about her and I am scared for her and I love her dearly.

As a caregiver, I could empathise with you. It’s sad, frustrating and worrisome all in one go. The only reason why you’re here is because you care deeply for your sister. But what I’ve learned is that there’s only so much you can do, because ultimately they would need to decide for themselves.

My husband is one of the strongest and most determined individuals I know to date, and I never once saw him give up on anything. But the past couple of days, he doesn’t even have the strength to walk or to eat because chemo just drained every ounce of energy left of him. It’s heartbreaking.

Nothing is guaranteed in life. Who knows, a healthy person may just die tomorrow in an accident. So just hang in there and be her support, at least you know you’ve done all you possibly can without ending up in a fight with her.

Totally can relate to feeling mad/scared/worried/love all at the same time. You can always vent here and find support.

It is so very hard to have no control sometimes in this shitty journey, both for the patient and the caregiver.

First round of Chemo? If she's having side effects these can be managed. SHe should call her Doctor or Chemo Nurse and Let then known. They can give so many things for nausea which really makes a difference. I know you are mad but you need to take that energy to be an advocate. I constantly needed my doses and side effects meds adjusted. I also asked for take home meds which weren't offered to me until I asked. ( Meds for Nausea, Sleep, Pain)

Nobody “wants” to be sick for the duration of chemo, or for any duration for that matter. If I’d looked at things in the short term that way and not in terms of the ultimate end result, I would have stopped oxaliplatin much earlier (and may not have kept getting pregnant, knowing I’d have awful nausea for the first three months). Maybe not a fair analogy, but you get my point. Have you asked your sister why she doesn’t want to be sick for three months? Maybe a dumb question, but I wonder what she would say. Does she think it won’t pay off in the long run? Does she not see it as a worthwhile sacrifice of her good health for those months of valuable treatment? Is she scared? Has she discussed the decision with other cancer patients who have gone through the treatment and who aren’t as invested in her decision as you are?

Yes, you should vent away here!! Yes, she should make her own decisions. I wish you both the best.
xo
Donna

She has had one infusion and that's it? Has she done anything to combat the nausea: drugs, adjusting premeds, fluids, saltines, whatever?

I have to say that if I were her I would be much more likely to complete the chemo and refuse the radiation, based on what other women say about the effects of radiation on them. Does she actually know about radiation effects? It seems as if a LOT of women are not informed ahead of time by their doctors. I be happy to trade 3 months of intermittent nausea for the lasting effects of radiation.

I don't blame you for being angry. Yes, of course it is ultimately her choice, but you have a right to your feelings. Vent away here.

Carboxo wrote:I know I don’t have the right to be mad. I’m not the one going through chemo but I be been there whenever called. I get the phone calls the messages that just tear me apart because I can’t help, but I’m angry. My sister finished her first round of chemo and then decided she doesn’t want to do any more because she doesn’t want to be sick. She doesn’t want to be nauseous for 3 more months. She just wants to do chemoradiation now only. She’s stage 3A. She’s only 48 years old. She’s only a year younger than me and what the hell. I’m mad at her for not wanting to fight. I’m mad that when I told her I love her and want her to be here that she ignored me. I’m just mad. I know it’s her choice but it’s not fair.

Instead or replying into the feedback you have already received .... (( NOT my usual response here ))

I want to support and validate what YOU need right now.
You told us ... you need to rant/vent.

DO IT
HERE !!!!
we gotchur back homie
WE KNOW

as a caregiver and Stage IVa survivor, Yes I have a few insights and comments, if that is what you NEED ?

I learned a LONG time ago that :

" You have ONLY 1 nervous system to protect...
AND that is YOUR OWN.
It doesn't matter what others "want" from you or life,
... WHAT DO YOU NEED ? "

Everyone who has replied IS a CClubber doing what WE DO ....
SUPPORTING YOU

...BUTT ... ( yeah there always has to be at least ONE )

WHAT DO YOU NEED ?

we don't know your sister
we know YOU

What do you need from US
your CTalk family ?


"Solve your problem" ?

OR

just listen while you vent ???

WE CAN DO IT WITH YOU AND FOR YOU !

WE are here for YOU
and YOU
are part of US !!!!

WORD

PM me anytime for any reason

In Harmony sista'
FOR YOUR SISTER

Always on the Journey
CRguy

Right or wrong it’s an emotion you are experiencing and having to process and it sounds as though it’s coming from a place of concern .

I have experienced some pretty abnormal emotions along the way from what I would consider my usual approach to life . The strength of them took me by surprise. I would have loved to just switch them off but it’s not so easy to do .

I once told my GP what was going through my mind and he gave me one of those kindly understanding looks and you know it passed . Thankfully he did not have a list of questions for me jump through . He just accepted it was there and reassured me it would pass .

Knowledge of the Cancer field can be harder on a relative . I sometimes wished for ignorance.

One thing you can pass onto your sister a small reduction in chemo did remove a lot of the nasty side effects my mum was experiencing and turned it into doable . My mum had a rough time on chemo but was a stage 4 patient with reduced options . Small adjustments returned her quality of life .

Take care ,

Stu

PS having spent the last ten years in oncology waiting rooms , going again today , I have seen some pretty agitated people . Knees shaking with anxiety, fingers almost twisted off them only to discover when the name is called they are not the patient . They are humans too and their anxiety is palpable. Is it wrong to show it , who knows but it’s evident anyway .

Thank you everyone for allowing me the space to vent. What I needed is a place to be heard where no one was telling me how much my sister needs me and relies and me and how when we were little she didn’t want to do or go anywhere unless she held my hand. This is hard. But I have an update.... She showed up unexpectedly at our moms. She drove over 2 hours to her house and spend this past weekend. She went to the cemetery also to visit our Dad. Dad has non small cell lung cancer (over 5 years free) that returned with sebaceous cyst carcinoma that showed up not in the eyes but in his arm pit. My Dad was a fighter but he also had dementia and has now been gone for 2 years.
She asked me to come to Moms and then she wanted me to spend the night but I was starting to feel I’ll so I went home. On Monday she decided to go get the port. She told me at 8 am. Her appointment was at 1:30pm and I live 4 hours away. She had to have someone there to drive her home. No Uber and No Lyft. She got the port done. Infusion day is as yesterday and before anything she talked to the oncologist about wanting to stop chemo and do radiation. I only have some of the results but they are changing her plan now. No XELODA oral pills. Going to do 5fu and the 2 day take home infusion inside of the once every 3 weeks of ociliplatin. Can’t do radiation until that is out of her system.
What my sister is is Scared. She feels totally out of control with this and that’s a major problem for her. I’m at least glad that she talked to her oncologist about how she is feeling because it’s too much on this end. I support her decisions but my feelings were so hurt since I keep telling her I love you and I want you to fight and not give up and she wouldn’t talk to me.
By the way, she knows that I vented to everyone here. I just hope one day she will try this out. Your advise and support are so appreciated.
Thank you everyone. I’m here for you too when you need me.