My grandma...

I_Run_For_Hope

My grandma...

I_Run_For_Hope

My grandma is an 86 year old with Her2+ bc (double mastectomy in March, on tamoxifen daily, herceptin every three weeks).  She never, ever complains or pipes up unless she is feeling extremely bad.  She gets super sick from the Herceptin infusions and the Tamoxifen is giving her bad leg cramps, interrupting sleep, etc.  Recently I looked over at her and I could see her leg muscle tensing and her face was twisted in agony (I felt sooo helpless).  When she mentioned the symptoms at her last Herceptin infusion the nurse was rude and brushed her off--didn't even tell the oncologist, and grandma was too embarrassed since the nurse shut her down.  I'm the only one available to go with her, but I'm only 20.  At my age do I have the right to demand to speak to her doc. or do you think I just be laughed at/ignored?  So frustrated with her medical team right now...

P.S. Has anyone else been in a situation like this before?  What did you do about it? 

AnnNYC

You absolutely have the right to demand to speak to your grandmother's doctor.  Bless you for going with your grandma to her appointments.

If your grandma is being treated at a hospital or big cancer center, there should be a patient representative you can speak to, if you are not getting satisfaction from her medical team.  But hopefully, some one on the team will pay attention when you say that your grandma's symptom's need to be discussed with the doctor.

megherb

I'm 21 and my grandmother (93) was just diagnosed with breast cancer at the end of May.  As long as you are taking care of your grandmother and it seems that you have been for the whole time, then you definitely have the right to demand to speak to her doctor to get the answers both of you need; the nurse should respect that you seem comcerned and should let you do that; you have rights that you are entitled to and would only be expressing that right; I'm not exactly in the same situation as you; my dad and I usually go to my grandma's appointments since we live with her, but there are family members who don't believe what we're telling about the doctor visits or what not, which is frustrating; my dad is the only one of my grandma's children who lives in the same state, two live a couple hours away, one lives about 8 hrs away, and the last one lives out west; they rather hear things from my uncle/cousin who lives in VA near Wash Dc and Maryland.  A lot of people in my family think of me as still being young and I'm not really feeling the support of taking care of her on an around the clock basis, same goes a little with my dad.  My uncle likes to think he knows everything that goes on here, thinks he's the one in charge,  and acts like he does everything and we don't, when he doesn't even live here.  He comes up for one day or rather night every other week and only makes his assumptions on what he sees, which is getting annoying to me and my dad; hope this helps

megan

croescade

My mother-in-law is 96 and has had breast cancer for 7 years. The consultant then said it was so slow growing that she would not die of it. About 4 years ago she was    'signed off'' from clinic and continues to take tamoxifen daily. She has moved to a retirement home where she is very happy but has begun to complain of breast pain in the affected breat. Her breasts are clearly different size. The loal doctor says there is nothing to worry about. But I do wonder whether pain after all this time is significant. I look after her interests as her only child (my husband) died 5 years ago. I don't want her disturbed and frightened and wonder what to do.

Juniper3

I agree with AnnNYC,  and what a sweetheart you are! I expierenced something that I will never forget from my mothers doctor in 95 when she was in renal failure,  from (BC) . He told me he was advising my mom that there was a new treatment for her and that they were going to transfer her to a new hospital to get started. I flat out told him that was a lie and he looked me and said "Who are you to take her hope away". I was speechless..My mother I believe would have wanted to know and I just chewed my tongue as he went to tell her. I had to pretend that it was going to be okay and that she was going to get better. My mom died 2 days later and we never said goodbye or had any closure,  Follow your heart and speak up.  Take a stand and be firm and if someone is rude, make sure someone knows about it. I'm no longer speechless when it comes to dealing with the medical profession.  Your age has nothing to do with it either so don't believe that you do not have a voice, I was 24 then and honestly I would have have much rather told my mother goodbye and that we will see eachother again then to have her believe in a lie. My mother was a person who did believe in truth. Take care Honey.

kisersassy

Meg I know what your saying, I have done so much research and asked so many people, even got a semi prognosis from John Hopkins University and some in my family totally disbelieves what I tell them or show them.  I know they look at it as hope that she will get better, but they are not looking at the reality of the situation that I am, this doesnt mean I have no heart and that I dont want her to get better, its just my way of dealing with the inevitable and preparing myself for the worst. Like right now I am flying up there on Wednesday and my aunt says I should wait a few weeks, well John Hopkins said after giving them a brief dx of her situtation said she only has weeks.  To me it is insensitive of her to tell me to wait.  I want to be there while my grandma can still enjoy my company and talk to me and maybe even go somewhere with me, not while she is bedridden and cant walk, or talk because of pain and sickness from the medicine.

Rhonda

I_Run_For_Hope

Hi everyone!  Sorry I've been MIA from here.  Good news:  they switched grandma from Tamoxifen to Arimidex and that seems to be making a pretty big difference in the leg cramping.  She seems so much happier and more comfortable than she did a couple of months ago.