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Caregivers

sistercare
0 Recommendations

Hi
I have noticed that some discussions on the caregiver site include members who have stage 4 cancer themselves. I woukld love to have the opportunity to talk about my fears for my sister without upsetting anyone on this site. Do you think it's a good idea to have a family/caregiver forum that specifically addresses our concerns and fears exclusively? Or should I just 'express' myself and hope I don't offend anyone? This is such a confusing time for me, and I feel I need support too.
Thanks for listening.

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Cancer Hormone therapy Avastin

12 replies

nancyc

Hi SC,
Speaking for myself, I'm not at all upset by caregivers asking questions, ventilating, and expressing their fears. Personally, I'm glad to know that there are family members and friends who care enough to try to educate themselves, and support themselves, too. Without getting ones' own needs met, supporting someone going through cancer is all the more difficult.
Metastatic BC isn't the same disease for all of us. We all have different diseases in a way. Some like me are fortunate to have less aggressive disease (for now, anyway) and can have a fairly normal life in between tests, scans and oncologist appointments, and some aren't so lucky. Even within this community scary things are discussed here, especially if you're newly diagnosed with metastatic disease.
Thanks for being such a caring sister. Consider yourself hugged.

kleighk

welcome here with open arms! Ask whatever you like and we can probably answer or tell you where to get the answer--there are some very smart girls on this site.

Is your sister interested in sharing with us? I walked alone for 7 years before I found this site and my life changed overnight!! It was such a comfort to know that there were others out there that were like me and understood what I was going thru. It was also nice to gripe and cry and get the understanding that my family and friends could not give me, not because they didn't want to!

Good luck to you and your sister--you're in my prayers!

sistercare

Thank you for your warm welcome and replies. My sister had a stage two cancer, mastectomy, chemo and then hormone therapy in 2007. Three weeks ago she was diagnosed with extensive mets to the liver( a 7 cm tumor) and possibly to the bone. She will be examined by an opthomologist becasue she is also having vision problems. Both times, my sister found the problem herself. Right now she is in extreme emotional distress. She vacillates between thinking she is absolutely fine, and being scared to death that she will be leaving her family soon. I try to walk a fine line between listening and caring and also helping her realize that she has a long(hopefully) journey ahead of her that she must start soon. She is on chemo xeloda and soon to also be on avastin. I don't want her to feel hopeless, yet I also want her to be prepared and prepare her family for the difficult road ahead. Sometimes I make her cry because I don't give tell her that she is 'fine'. She isn't and won't be, and though there is always hope, she needs to face the realities too. Am I being cruel? Should I let her live with her dreams? What about her family? So, I am somewhat lost myself and don't know what to say or not say. I have doen the research; she can't look at it. I have found integrative clinics; she wants to stick with the doctor she has. I know it's her life, not mine, but I'm worried that she is not always making rationale decisions, but rather living in a dream world.
Thanks for reading this.

chainsawz

You are always welcome here! Everyone is very supportive and we will do our best to answer your questions. I have been looking for an online caregivers site for my family so please let us know if you find one. That seems to be lacking unfortunately.

It's good you don't want your sister to feel hopeless, because that is our one powerful tool....hope. We always have that no matter what. Hope is a night light in a dark scary room for me. It's great you are doing the research for her. It is important to fight this monster with both eyes open. She is probably too overwhelmed it is too hard to process more information - I think with a little time this will change. Until then just be there for her. I sure do wish I had a sister like you :> Best to you and your sister! lisa

JTM

Dear Sistercare; How funny, it sounds as though we are opposites of each other! I have the cancer yet it is my older sister who's in denial! I am the realistic one and she is the one who prefers not to talk about it. You do what you need to do for you to continue your support of her. And I very seriously doubt you'll offend anybody on this website when seeking help or encouragement or just venting! Good luck and God bless! Sisters are wonderful!

ious1Tjed6247

You are an excellent listener. My daughter was like this in a way. A simple sentence shared again & again will get her to start thinking.
(Right now ....she is reacting....and this is normal).
She feels like she is in quicksand one minute and discounts her feelings the next...thinking it's a dream. (Denial).

HOPE .... is "key". (It's what keeps us all waking up every day and praying we can overcome this hurdle and find a cure).

Give her HOPE but share that KNOWLEDGE is also "key". Help her to realizing that both work together. Encourage her by affirming and saying over and over ...........both of these work together for good.

Maybe then she can take the "next" step. You are a gentle soul and I hope this helps. Should she not acknowledge this...I would seek a professional to be able to offer help as this is thin ice you are walking on.
I know.....I've been there.
((Hugs)) Tara

gasketman

Sistercare,
As it has been said before Hope is what the light that drives us all care giver or alligator wrestler. Be there for your sister and support her through this long fight. Helping her with questions to the ONC and being as up beat as you can.


HOPE

..... perches in the soul,
And sings ....
And never stops at all.

Emily Dickinson

GOD BLESS you and your sister.

My prayers and hopes are with you both.

Scott

bailey2805

Sistercare,

I am a long distance caregiver. My Mom has has been fighting this for 10 years!! She is stage 4 with it in her liver. She is 3 hours away, but we talk weekly. Her attitude has been great since day 1. She has shown me how strong faith can be. I am here for you as 1 caregiver to another!!

I will add you and your sister to my prayers!! Let me know if there is anything else I can do

Pam

sistercare

Thanks for your reply. It's at times like this that I wished I had been brought up by religious parents. My sister has been given maybe a year by her onc. How has your mother managed for ten years? That's wonderful. Right now, I'm kind of feeling hopeless, and trying hard not to let my sister see it.
Cary

anything4mom

Hi Sistercare - I have not been a member of this group for very long but have already found more inspiration, support, caring and information in 2 months here than in the 2 years since my mom's diagnosis. When my mom was diagnosed she was not supposed to live 6 weeks & she was critically ill - 29 months later she's going strong with mets to the lungs & bones. I think in another posting chainsawz said not to let anyone give you an "expiration date". I loved that. And Gasketman is an amazing example of a caregiver's role on this site. I think everyone's experience here is a little different but it is all helpful. I am also here as a fellow caregiver - you can friend me if you like. Maria

sistercare

I am so glad to hear that people are still here after the stupid doctors told them they wouldn't be. I really don't want to believe in 'statistics' right now. There is something terribly wrong with this system. Where are the doctors who truly care???

ious1Tjed6247

Yes, every day....it's a stuggle. Plain and Simple. Advocates and Caregivers alike Hope that tomorrow the "news" of the day will be NED (No Evidence of Disease) ....for someone we know w/Cancer....and love.

I cannot give you the answers.....about doctors.

I CAN shout from the rafters, lament with others in similar situations, talk....talk....talk about this and educate the communities & be involved. BUT.....it has to be important enough to make the #1 Headline and we are not yet there.....b/cause of lack of either empathy in MBA (Metastatic B/C)....or because we're seen @ Stage IV.....as a 'final curtain call'.

NOT !! NOT!! WE HAVE HOPE! And many are defying what the prognosis for their illness is.
OUR next step is to figure out how to get PAST - - oh yes... that crack in the door and mobilize the troops, or the powers that be to take a GOOD & HARD look at our survivability rates and get serious about finding a way to combat the alligator's lurking (cancer cells) and starve them so this disease can be once and for all ....CURED.

Many Advocats and Caregiver's are doing just that as well as those with this insidious disease by attending speaking engagements, interviews, magazine articles, attending seminars, etc.
ONE DAY at a time.....EDUCATE everyone around you as it not only empower's you as a Caregiver, when you feel helpless, but ADVOCATES for others your ......desire for the CURE and your sister's Agenda.

Love and Hugs to you today.
Tara

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