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My grandmother

lani812
Posts: 22
Joined: Jul 2011

hey guys,
I really need the help and support of those of you fighting this thing. I take care of my gma shes 75 and she was diagnosed with 3rd stage t cell lymphoma and the doctor suspects it to soon reach stage four. she is scheduled for a bone marrow biopsy soon and she is terrified.I hope that nobody gets offended for me reaching out since I am not the one with the disease but i am fighting this with her no matter how long or how hard this road is. My family and myself have experience with this decease since we lost my aunt to this 2 years ago. We fear this might turn into something genetic but even if it does we are a very united family and we stick together no matter what. My grandmother is really scared of the bone marrow biopsy. She just started chemo and she is getting very light dosages because of her age and even that was hard for her to handle. I do not mind realistic answers as well as words of advice or support. I will not be offended. I have already heard from the doctor what the outcome of this might be and i have already lost one family member who was under 50 years of age. im scared.. but hopeful.

Should I ask the doctor that she completely sedated for this??
what can I do to make this as easy for her as possible? (i bought her a journal shes writing her autobiography:)
has anybody else lost family member to this?
any elderly survivors?

plz any words would be appreciated.

allmost60's picture
allmost60
Posts: 3184
Joined: Jul 2010

Hi,
I would definetely ask her doctor to sedate her for the BMB...especially at her age. I had one done last summer and only had a numbing agent to the skin and a low dose antianxiety pill..(adivan(sp?)... didn't help at all. I am 60 years old and will NEVER have another one done without being knocked out. She does not have to be awake to get this done. The procedure is fairly quick, so it won't take a large amount of medication to put her out. Please come back and tell us how it goes for her. Best wishes.. Sue
Follicular Non-Hodgkins Lymphoma-grade2-stage3-typeA-diagnosed June 2011.

COBRA666's picture
COBRA666
Posts: 2413
Joined: May 2010

Go with the sedation. I had mine done a year ago without it. I did have a numbing agent,but it did not help with the feel of all the pushing and pulling. I thought the thing was gonna break off. It is scary to say the least. I almost passed out after the proceedure. My blood pressure went really low. That was caused by the fright. John(FNHL-1-4A-5/10)

lani812
Posts: 22
Joined: Jul 2011

i think they might want to keep her overnight if they do sedation. Shes being treated at NYU medical. Doctor is amazing but I was shocked that she didnt give me having her sedated as an option. until i came here and heard the stories about how painful it is. She is really terrified she hasnt been able to sleep much since she found out she needs to get it. also because it will determine if her cancer is at stage four. she just had a PET done two weeks ago and she also takes heart medication. if a young person almost passed out from the procedure i dnt even want to think what this could do to her. I would give anything to switch places with her.

why didnt her doctor tell me that she can be sedated??

BMB is scheduled for this friday 8/5 at 10 am. i will let you guys know how it goes. thanks for the support.

love,
lani

miss maggie
Posts: 929
Joined: Mar 2010

Dear lani,

You have to insist upon sedation. I am pasting a copy from one of my files. Ask
your grandmother's doctor about this sedation. I would think you would have to
call the doctor first, asap, before Friday. This way the doctor will have the
sedation ready for your grandmother on Friday. See below for the name of the sedation.

MAKE sure with bone marrow biopsies you have Vercet given - you have no memory or pain - wouldn't think of doing without that

Please post and let us know what the doctor says. Insist on it. Love Maggie

lani812
Posts: 22
Joined: Jul 2011

so i called the doctor to request sedation and she told me that she can hold of on the BMB since my gma just started chemo. she got a PET done two weeks ago and she said that to come get the results and that we will take it from there. she said the BMB is only to determine if she is at stage 3 or 4. she said the treatment is the same for both stage 3 and 4 is this correct?? isnt 4 supposed to be more dangerous??? she said we can hold on on the BMB till we see how the cancer reacts to the chemo. is this correct?? she said shell still have the get the BMB done in due time. and that when it is done it will be done under sedation. i cant express how thankful i am for u guys and ur advice.

Does anybody know of any programs for people with lymphoma in the NYC area that speak spanish? my gma has been really sad and i feel it would do her good to hear from someone going to the same thing as her.

btw she said to tell u guys that thank u so much and that god bless you :)

appt. is still on for friday 10 am

much love,
lani

KC13167's picture
KC13167
Posts: 215
Joined: Jun 2010

Iani,

Call your local American Cancer Society or even ask your Grandma's doctor if they have anyone, in a similar situation who speaks Spanish. I imagine that someone would be thrilled to have such an opportunity.

I had stage IV lymphoma. You are correct, there is not much difference between III and IV. For my lymphoma, diffuse large b cell, the treatment would have been the same.

When conscious sedation is used, there are other items that must be available. It is not usually offered in an office setting. But, good for you for being such a wonderful advocate. Please keep a notebook of all that goes on with your Grandma medically. It can be so overwhelming to try to remember all that goes on. Good luck to you.

Kellie

lani812
Posts: 22
Joined: Jul 2011

my grandmother has T cell lymphoma. everybody i speaks to tells me of b cell. the doctor said it was rare but idk just how rare. and how do i get in contact with the american cancer society?

lani

KC13167's picture
KC13167
Posts: 215
Joined: Jun 2010

http://www.cancer.org/Cancer/news/index

This link will bring u to cancer.org. This particular page offers options in Spanish and an 800 number for ACS. I hope it helps

Kellie

violinist1
Posts: 33
Joined: Aug 2011

Hello,
When i had mu bone marrow biopsy, the doc refused to sedate me even though i begged her out of fear. Just lidocaine. It was gruesome. My doc will never sedate me. How come everyone else seems to have a choice? I was going to have a n investigative procedure called radiological intervention, where they were going to take a look at my femur for a possible metastasis, but it eas cancelled. For that i was getting full sedation. Why wouldn't my oncologist agree to it for the bmb? Isthat the latest thing? Torture? Or did she just unilaterally decide that i could take it?
I suffered quite a bit of mental torture before it, but behaved perfectly during it, even though it was an experience i wil never forget. Drilling and twisting into your hip bone? G in heaven wouldn't cast that down on the worst sinners
That was just an emotional outburst,, not my personal code.

dixiegirl's picture
dixiegirl
Posts: 1043
Joined: Apr 2006

When I was having some other type of procedure, like a biopsy I was sedated. Unfortunately
the clinic I go to for my SCT also will not sedate me. Something about not having a recovery room was the excuse I was given.

I agree, it's so painful and I hope at my 100 days they decide not to do another bmb.

Take care,
Beth

KC13167's picture
KC13167
Posts: 215
Joined: Jun 2010

Beth,
You are right. Protocol dictates what must be on hand before conscious sedation may be used. Most offices to not have the credentialed staff and monitoring equipment, that are necessary, on hand. Unfortunately, for us, it is not cost effective for them. (I hear you! John) My oncologist's office doesn't offer sedation either.

It is barbaric to do it without sedation. Children have BMB completed at bedside. Their site is the sternum, not the hip. Poor babies, I can't even imagine it

How about that quality of care.

Kellie

violinist1
Posts: 33
Joined: Aug 2011

Hello,
When i had mu bone marrow biopsy, the doc refused to sedate me even though i begged her out of fear. Just lidocaine. It was gruesome. My doc will never sedate me. How come everyone else seems to have a choice? I was going to have a n investigative procedure called radiological intervention, where they were going to take a look at my femur for a possible metastasis, but it eas cancelled. For that i was getting full sedation. Why wouldn't my oncologist agree to it for the bmb? Isthat the latest thing? Torture? Or did she just unilaterally decide that i could take it?
I suffered quite a bit of mental torture before it, but behaved perfectly during it, even though it was an experience i wil never forget. Drilling and twisting into your hip bone? G in heaven wouldn't cast that down on the worst sinners
That was just an emotional outburst,, not my personal code.

bluerose's picture
bluerose
Posts: 1112
Joined: Jul 2009

I am sorry to hear that your Grandmother has been diagnosed with lymphoma. My Grandmother had it too but that was about 50 years ago (yikes I'm old, lol) and back then there was nothing they could do really and she passed soon after her diagnosis - it was very aggressive. But that was long ago before they had all of these new treatments.

Flash forward now to 25 years ago and I was diagnosed with it too but I don't know if it's the same kind of lymphoma I have compared to hers. Some people say it can be hereditary and others not so not sure what to believe. Regardless, I am sure it can skip family members too so no use worrying about it.

Now I was 38 when I was diagnosed and could handle the bone marrow transplant (autologus - meaning my own marrow) better but it was still very hard on me. Back then though even when I had it done it was much different and I was in the hospital in isolation for 2 months. Treatments have changed so much though so her doctors are much more up on what she might tolerate the best.

I don't know if they do bone marrow biopsies the same as when I was biopsied but if they do then if at all possible have her SEDATED. It wasn't pleasant. Now for medical reasons this might not be possible with your Grandmother but I have been having, for some procedures and surgeries, a thing called conscious sedation. What it is is that you are actually mentally present during the procedure but you don't know it. If the docs ask you a question you can answer BUT you have no recollection of it after it's done. So basically you forget about it all. It's my best friend. I even have that for dental extractions. Cancer procedures can be traumatic for some patients so if at all possible why go through it if you don't have to? Ask her doctor about conscious sedation. It doesn't have the after effects of regular anaesthesia either and is easier on the body - way easier.

If you are concerned that maybe the current doctors aren't working with you or giving you all the options there is no harm in a second opinion. I had 3 opinions before I moved on many things. Why not?

It's normal for her to be afraid, especially at her age, she is very very fortunate to have a granddaughter like you. Many people find themselves abandoned when they need help the most, your Grandmother is blessed to have you fighting the fight with her. This will help her greatly, my hat is off to you. Remember though, you need to take care of yourself as well, many caregivers forget about themselves and you won't be of any use to her if you crash. Take time to care for yourself too and get in some respite to help with her if she needs constant care.

All the best. Keep us posted. You have come to the right place for support.

Blessings,

Bluerose

lani812
Posts: 22
Joined: Jul 2011

the results of the pet scan came back it was a little scary to hear how it has spread but the doctor said its normal for her type of lymphoma to spread to the places it has. she lost one pound which is not bad because before the diagnosis she lost almost 25 pounds in the course of 2 months. she has a lot of appetite which gives me a little peace. she is still to terrified to go through with the BMB so im not pushing it and she doctor said shell let me know when it becomes mandatory. But she says that she is most likely in stage four and that the treatment isnt any different unless the cancer nodes get larger in size

blue rose its so difficult. i feel guilty and I dont know why. I wish there was more I can do but she is having a really difficult time with the aftereffects of the chemo. she says she feels sooooooooo tired and the discomfort in her stomach (doctor says its a good thing because it means that the cancer cells are dying inside her tummy) shes not getting much sleep (nothing past 4 am) and chemo is schedule for next Wednesday. and we r going to go see the cardiologist on friday.

do the aftereffects get progressively worst???

im trying my best. i really am
i work full time and im in my senior year of college im 21 (well ill be 21 on friday) and i feel a little a little guilty that her appointments get scheduled around me because i go with her. i feel guilty that i cant take care of her all day. my mom and my aunts do and my grandpa are always with her shes never alone but i still feel guilty. i feel like this isnt fair.

writing on this site is the first time i vent,
its the first time i write like this...
i feel guilty that im writing about myself right now...
i just want this cancer gone.
is that to much to ask?

lani

allmost60's picture
allmost60
Posts: 3184
Joined: Jul 2010

Hi Lani,
You have nothing to feel guilty about dear one. I have a granddaughter your age...(she will be 21 Sept 1). My dear sweet Chelsie is always calling or stopping by and saying how un-fair this nasty cancer is. I see the fear in her eyes and the worry she has for me, and the best I can do in keeping her calm is to keep telling her "all will be fine,just faithfully say your daily prayers, and leave the rest in God's hands". You need to remember that us gramma's don't want you girls to worry or feel guilty about anything regarding the cancer we have. It's not anyone's fault...it just is, what it is. You are fortunate to have family members taking care of your grandma when you are not able to do so. Thats what family does when a crisis occurs...we band together and deal with the situation as best as can be. You are a sweetie for going to her appointments with her and I can tell you love her so very much. She knows it too, and I'm sure she would be upset if she knew you were feeling guilty about anything. You ask if it's too much to just want this cancer gone...no it's not to much to ask, but it's not realistic. Instead of wishing it gone, just pray each day for a cure, and add a special prayer for your gramma to have a good day. The power of prayer is mighty, not only for the one you are praying for, but also for yourself. You come here and vent anytime you need to dear one, and PLEASE quit feeling guilty. Keep a positive attitude and give gramma a kiss and hug along with a big smile each time you see her. God bless you sweet child and I'll keep your gramma in my daily prayers. Much love...Sue (FNHL-2-3A-6/10)

bluerose's picture
bluerose
Posts: 1112
Joined: Jul 2009

You can't worry about after effects right now with your Grandmother, right now it's about the right treatments so just listen to the doctors but if you have questions they should be answering them for you.

Tiredness and nausea and soreness are all very common side effects of chemo, it's not an easy treatment for sure but the payoff can be great. She will get through it, just takes time. Think about what the treatment is doing - it's killing bad cells and that is hard on the body, it's being hit with all kinds of harsh drugs so all of that is to be expected - it just all sucks is the bottomline but keep looking to a good outcome and that will get you all through.

As far as the guilt you feel is concerned that is normal too BUT we can all tell you that you are doing more than the very best you can do right now given your age and situation and you NOTHING to be guilty about. We are all telling you that. Just tell your inlaws you want to stay informed and ask them to ask the doctors questions for you and get the answers and if not call the docs yourself. Information is power and information can give you peace of mind in knowing that all that can be done is being done in it's own good time.

Caregivers always feel that there is more that they can do or should be doing but really it sounds like you are doing alot for her. Just being there and being involved is doing more for your Grandmother than you even know. You know there are many survivors who are abandoned by friends and family in situations where cancer comes calling so right off the bat your Grandmother is blessed in spades that she doesn't have to go through this alone. You say she is never alone and someone is always with her, what more could she ask for or need? Stop feeling guilty and put your energies into telling your Grandmother how much you love her and maybe put energy into thinking of things to send her that will be pleasant reminders of your relationship with her, put together photo albums or frame a favourite picture of the two of you or keep her updated on all you are doing too. Oftentimes we survivors stop hearing about our dear ones lives because they feel guilty about talking about themselves and that makes us then feel guilty we are imposing our illness on others, it's a viscious circle this guilt thing.

Continue to love and support your Grandmother as you are and just enjoy her as you always have. That's the greatest support.

Blessings,

Bluerose

lani812
Posts: 22
Joined: Jul 2011

hey guys all ur support is so appreciated. im a little scared right now. she cant even get out of bed on her own she cant go to the bathroom on her own. She has chemo scheduled for tomorrow at 1030 am. someone had the audacity to tell me that i should just not take her to chemo anymore that shes going to die either way. family can be really cruel at times. i refuse to loose this fight without at least giving it a chance. i refuse to quit without a fight.

i spoke to a cancer survivor who was speaking to me about blood counts. im not to sure what that means. she saw my grandma and told her she thinks her blood counts are low because shes getting delusional. shes forgetting small things and getting lost in the middle of sentences. her feet are also swollen im taking her to the cardiologist for that on friday since she has a history of heart problems.

i have a strong feeling the doctor will ask to leaver her in the hospital tomorrow after our visit shes 74 and very weak. well see what happens wen we get back the results from last weeks blood work.
my grandma has 7 kids and we are 17 grandchildren all together. that means there r a lot of people calling my phone asking me for answers that i do not have.

i expected the possibility of things getting bad. just not this quickly.

bluerose's picture
bluerose
Posts: 1112
Joined: Jul 2009

I am so sorry you are having to go through all of this right now. I do hope you have your faith to help you through, it helped me tremendously when I was going through my cancer journey.

It might be the best thing for your Grandmother if she went into hospital, especially if she is unable to get to the bathroom on her own and that type of dependancy.

Just keep writing down questions that your family has and ask the doctors next time you see them, that's all you can do. Just tell your family that you will ask the doc next time you see him/her and if they want more complete answers they might need to call the docs themselves. You could also suggest that you will update by email everyone at once as soon as you know something new, that way they might just watch their email instead of calling you all the time. Putting alot of pressure on you with calls all the time.

Your Grandmother is on in years and that plus treatments will for sure make her very very tired, it does anyone and at her age too. The doctors are well equipped I would hope to make the right decisions for her as to treatment but the family has the yay/nay final decision for sure. Did you get a second opinion? I forget.

Will be thinking of you today. All the very best.

Blessings,

Bluerose

allmost60's picture
allmost60
Posts: 3184
Joined: Jul 2010

So sorry your grandmother is having such a hard go of it right now. I'll keep her in my prayers for chemo to go smoothly today. Being in the hospital for it sounds like a good idea. This way she will have constant care and someone checking on her. Take care of yourself through all of this...cancer takes a toll on the whole family and can make the days seem so endless. Let us know how she does with the chemo..when you get the time.
Much Love...Sue (FNHL-2-3A-6/10)

lani812
Posts: 22
Joined: Jul 2011

hey guys chemo went well. surprisingly her blood counts came back fine. the doctor gave her pills for her appetite and to help her sleep. only 4 rounds of chemo to go :)

she is no longer walking alone
she cant stand for more than 2 or 3 minutes at a time.
she lost 3 more pounds

the day she got the chemo she got the runs like 2 mins after and i had to carry her to the bathroom and she almost collapsed and started crying. i honestly felt like i wanted to sit on the floor in the hospital bathroom and cry with her.

she cant even lift a cup of water anymore. the oncologist send her to get the xray of her chest and back and looks like we really are going to need the bone marrow biopsy after all cuz her bones are completely weak right now.

on the bight side she seems more at peace she has more of a will to fight. i think shes getting used to pushing day by day. i try to keep her house as neat at possible because i know we cant afford a cold or any germs right now.
my grandpa keeps taking things apart and putting them back together haha guess that is his way of coping.
i know that you guys are the only people that understand wat shes going through right now.
she tells me she feels soooo tired that she cant even explain it. u guys are true heroes. my respect to you for pushing and surviving every single day past cancer.

my brother is on his way home from florida with his 2 year old son. we are having a family party for no reason. i know seeing all her kids and grandkids together makes her happy. i see the color flush back to her checks when she sees a lot of us in one room.

im grateful for every minute i have with her. and im grateful for u guys. i tell her about all of the stories that i read her and that shes not alone.

thank you, ill let you know how the next doctors appt goes... :)

humbly,
lani

KC13167's picture
KC13167
Posts: 215
Joined: Jun 2010

Iani,

You are incredible. You are able to appreciate the smallest things, your Granddad's coping mechanisms and the joy in your grandma's face when she's with her family. What a blessing you are to all of them. I will continue to pray for you and your family. Please don't forget to take care of yourself too!

Big hugs!
Kellie

allmost60's picture
allmost60
Posts: 3184
Joined: Jul 2010

Hi Lani,
Thanks so much for letting us know how chemo went for your grandmother. You are such a sweet caring granddaughter..just warms my heart. You take care, and I'll keep your grandmother in my prayers. Much love...Sue (FNHL-2-3A-6/10)

lani812
Posts: 22
Joined: Jul 2011

my grandmother was rushed to the er on sunday morning with severe chest pains. that turned out to be a swollen heart and water in her lungs. she is now officially at stage 4 and her calcium levels are really high. she is also at high risk of a heart attack. today is the first day i have been home since sunday i came to shower and eat since things have stayed the same for the past 3 days my aunts are spending the night since classes start for me tomorrow morning n grandma will not have me miss the first day of my senior year of college. but i dnt want to go anywhere but next to her. shes asking to see people like my cousins and her sister and my uncle that lives in north carolina and is flying in tomorrow. shes forgetting who i am sometimes her memeory comes and goes and she falls asleep in the middle of sentences. i fear that this might be it...and im not ready.

lani

allmost60's picture
allmost60
Posts: 3184
Joined: Jul 2010

Hi Lani,
You have my prayers for your Grandmother. This has been a very hard time for you and your family, and your Grandmother is so fortunate to have all of you. My heart goes out to you. Thanks for keeping us posted. Much love...Sue (FNHL-2-3A-6/10)

bluerose's picture
bluerose
Posts: 1112
Joined: Jul 2009

I never come on at night but just felt I should tonight for some reason then I saw your post and I am glad I did.

I am so sorry to hear your Grandmother has taken a turn for the worse and what a worry for you with starting your senior year of college and all. I am so sorry you are all going through this but I just have to marvel at how fortunate you are and your Grandmother is to have such a supportive loving family. What a tribute to her, how much her family loves her and is there for her. That is no little thing. Even though she is forgetting now and then you can bet she can feel the love and suport and I know that is helping her through whatever she is facing over the next little while.

We are never really ready, no matter when it may happen and just to let you know that no matter what we are all here for you, you aren't alone in this at all.

You are in my prayers.

Hugs Lani,

Blueroses

lani812
Posts: 22
Joined: Jul 2011

the waiting game is difficult. she says shes packing her bags like shes going on a trip. she is at peace and has told her what she wants to wear and what flowers she wants. and now we wait. my grandmother is at peace with the situation. we appreciate all of the prayers and warm thoughts. this might take a day or it might take a week or even a month. but i am proud to say that i gave her all the love i have to offer.

i decided to go to class tonight. i need a small change of atmosphere for a few hrs.

at peace,
lani

Go_go_Gi_gi
Posts: 84
Joined: Aug 2011

So sorry your grandmother and you are going through this very difficult time. My prayers will be with your gmother and you--What a wonderful way to show your love to her. Your support and love and ---encouragement. That is an encouragement for us as well. Just saw your post for the first time this morning. May the Lord bless your grandmother and you, along with all of your family and provide amazing support when you need it!!! Susan
Gi-Gi is one of my grandchildrens' nicknames for me!

bluerose's picture
bluerose
Posts: 1112
Joined: Jul 2009

Wow. What a mature and healthy attitude you have about all of this and how strong you are. It sounds like, for a sad experience, your whole family seems to be making it as tolerable as possible for all concerned including themselves. What a great strength it takes to just realize that you need some time away from it all and that you did go to class which symbolizes your ability to move forward even when all of this is currently happening. That is so healthy and brave, I can't tell you. I think the loving and caring person that you are makes this possible.

I am so glad that your grandmother is in such a good place right now. You often hear of this space and it's what we wish for our loved ones at this time in their lives.

You and your family are in my prayers. One day at a time.

Blessings,

Bluerose

lani812
Posts: 22
Joined: Jul 2011

i sit here watching struggle to breathe more and more everyday. she told me the end is near and to make sure that i cry because crying is good. my family is being very difficult. my aunts and uncles and especially my mother are in denial. they wait for a miracle. but she told me she doesnt want a miracle. that shes ready to meet her creator. we have been in the hospital for 7 days today. i feel guilty in saying that myself and her have the same wish for the suffering to end. i havent thought about life after this. after i loose my best friend. doctor told me this morning that everything medically possible has been done.

i still cant help but to feel guilty. like there was something different i could have done. i feel like the chemo made it worst. sometimes i feel like we should have just ignored this. i wish i could crawl in a corner and cover my ears so that my family can stop asking me questions and asking me "why"? they arent being fair to me but im so numb that i dnt even care. i want it to be just me and her and i want to walk her to the door and let go of her hand and give her to god.

i feel guilty for wanting this to be over.

waiting,
lani

dixiegirl's picture
dixiegirl
Posts: 1043
Joined: Apr 2006

Do not ever feel guilty for wanting what's best for her. I understand completely. She knows you're there for her and that you understand.

Take heart knowing you're doing and feeling just the way you're supposed to.

Beth

allmost60's picture
allmost60
Posts: 3184
Joined: Jul 2010

Hi Lani,
It's so hard to watch someone we love suffering, and I think it's especially hard when it's our dear sweet grandmothers. I know it was sure hard for me watching my grandmother slip away 7 years ago.I still think about her everyday, but have tons of many fond happy memories that help with my missing her so much . All you can do is tell your grandmother how much she means to you and spend what time is left by her side. Try to be patient with the rest of your family. They obviously arn't ready to accept the thought of her leaving all of you. Take care sweet girl and it's ok to feel what your feeling...it's all part of the grieving process. My thoughts and prayers are with you. We are here for you. Much love...Sue (FNHL-2-3A-6/10)

bluerose's picture
bluerose
Posts: 1112
Joined: Jul 2009

I can just feel the hurt and sorrow in your post and I am so sorry you have to go through this but I think it will probably be important for you to have been there to help your Grandmother through her final journey. You ARE DOING more than many would do under the circumstances and as far as the rest of your family is concerned just try to shut them out of your mind with their questions and refer them to the doctor. You can answer them briefly but if they were that interested they would discuss this with the doctor or come and be there to support your Grandmother and you in person. I think this is a time for you and your Grandmother to be together so don't feel guilty at all, you are just a marvel to me. I wish I had that kind of support that your Grandmother has in you, I know she appreciates it and is comforted by it.

I know what you mean about wanting it to be over because so does she. I feel too that it's time and I know that when a person is near 'going home' they do feel it and they are at peace with it as you describe your Grandmother is telling you. The others in the family aren't as close to her as you are, at least that's how I feel it from here, and so they are going with all they know - fight it. You and your Grandmother have gone through it day by day so you have more reality as to the real situation. You have nothing to be guilty about. In fact you are thinking in the most humane way possible, why drag the inevitable out? Yes, miracles do happen but sometimes the miracles aren't exactly what we had expected. Maybe the miracle in your Grandmother's case is that she is being allowed to go home soon, no one knows what His plan truly is. I am glad though that you both have God in your lives, I know He was instrumental in my cancer journey.

I am sure you are exhausted in all of this and hope that you are getting some rest. Please remember to take care of yourself too. Keep writing as you feel you need to and we will be here for you. I have wondered the last couple of days where you were.

You are both in my thoughts and prayers Lani, just be with your Grandmother - that's the greatest gift you can give her. You are a strong and loving Grandchild, she has been so blessed to have had you. You are giving her great comfort.

Blessings,

Bluerose

Go_go_Gi_gi
Posts: 84
Joined: Aug 2011

Lani, may God continue to lift you up, bless and encourage you. What a wonderful gift of support for your Grandmother!!! I agree with the others for you---take care of your grandmother and yourself; that will be a light to your other family members---May the peace of God transcend for you and your Grandmother during this difficult time.

Continuing to pray for you both and your family-Susan

bluerose's picture
bluerose
Posts: 1112
Joined: Jul 2009

Has anyone heard from Lani in private messages? I haven't seen a post about her Grandmother's situation for a few days.

Thanks

Bluerose

lani812
Posts: 22
Joined: Jul 2011

hey blue rose,
sorry havent written in a couple of days. grandma was suppose to be releazed into hospice care yesterday to finish her days at home. but now we are faced with an infection and a fever that we cant seem to get rid of. doctor are trying their best to make her as comfortable as possible. my mother is in complete denial of the situation and latley ive spent my days arguing with the red cross to get my brothers emergency leave since they are in the military but basically they are making my life difficult.
the lymph nodes in her both sides of her groin are about the size of my hand i can also see and feel two large ones in her tummy when i changed her diaper. i spoke to the oncologist yesterday who told me that we should get ready for the end.
i was kind of hoping she would get a chance to go into hopsice. we have everything ready bed oxygen nurses and everything but doc said hes not sure if she will make it to get to go into hospice.
she isnt in any pain. we listen to music at night. we talk and we laugh. i see how hard it is for her to breath any time she falls asleep which is like every half and hour and sometimes in the middle of conversations.

i dont want to see her like this anymore. it seems like there arent enough hours in the day for me. when she sleeps at night i dont. because i know eventually shes going to fall asleep and not wake up. i dnt cry and im getting good at pretending im ok. grandma doesnt cry either. but she said to do so when shes gone and then i will.

thanks for keeping me in mind. you guys are truly my diary.

lani

Go_go_Gi_gi
Posts: 84
Joined: Aug 2011

Hi Lani,
You and your grandmom are such a comfort to each other during this tough time. Praying for both of you; comfort and peace in the midst of the struggle and emotional pain. You will have some fond memories of this precious though painful time. Share whatever you need to here; there are some great friends and support here-- Susan

bluerose's picture
bluerose
Posts: 1112
Joined: Jul 2009

Good to hear from you, we were wondering how it was going.

I'm sorry to hear of your Grandmother's condition but the fact that you and she are still laughing sometimes is so wonderful to hear. Have you thought out watching old family videos or film or anything? That might be nice to look back her life at special times, together.

Yes it sounds like she might not make it out of the hospital but you never know, only God knows. Spend the time with her and enjoy each and every moment that you can in stories about the old times and the new times you spent together as I'm sure you are doing and let God take care of the whens and whys if you can.

You are just so special the way you are caring for your Grandmother, down to changing her diapers - just amazing. What a special relationship you have wiht each other, what a gift. Sounds like she has a life well lived.

Hugs,

Bluerose

lani812
Posts: 22
Joined: Jul 2011

grandma passed today at 4:05 pm while i recited psalms 91. She went peacefully and in her sleep. I want to take this opportunity to thank everybody on this forum that went through this with us. On behalf of grandma and myself thank you!

R.i.p
escrimilda
4-1-37 to 9-21-11
mother
wife
grandmother
great grandmother
overall awesome human being.

Humbly,
Lani

allmost60's picture
allmost60
Posts: 3184
Joined: Jul 2010

Dear Lani,
I am so sorry your Grandmother passed away. My thoughts and prayers are with you dear one. You are a pretty awesome human being yourself, and I'm sure your grandmother would say the same thing. God bless you and your family. Much love...Sue (FNHL-2-3A-6/10)

forme's picture
forme
Posts: 1162
Joined: Aug 2010

Dear Lani

I am so very sorry for the loss of your dear Grandma. You were able to share so much with her, you are a very special granddaughter.

Peaceful healing for you and your family during this difficult time.

Lisha

dixiegirl's picture
dixiegirl
Posts: 1043
Joined: Apr 2006

Oh Lani, I am so sorry to hear of your loss. I cannot imagine a more peaceful way to go. You have been a wonderful support to her and I hope you realize what a special person you are.

She's at peace now.

Take care of yourself honey.

Beth

bluerose's picture
bluerose
Posts: 1112
Joined: Jul 2009

Hi Lani,

I am so sorry to hear that your Grandmother has passed but considering her state I know you realize it was for the best and that she didn't hang on and suffer any longer.

The others have said it all really, you are a terrific person and I know that your Grandmother had greater peace with you there to comfort her the whole time through. It's just wonderful. Support is such an important thing for our well being and I know what it is like to have virtually no support so your Grandmother was truly blessed to have you, and you her throughout your short life thus far. I know she will be with you in your heart and in spirit forever.

Hugs Lani,

Bluerose

lani812
Posts: 22
Joined: Jul 2011

i feel like i should be sadder. i feel bad for being ok with with her being gone. i feel bad for expecting it. I am only grateful that she waited for me to get there. i hadnt seen her in 4 days i got cought up with school and work since she had been the same for a month now. but she waited for me. she loved than much. i havent left my bed since they took her away yesterday afternoon. but i have to go make funeral arrangements at noon. im taking of school and work until monday because i cant stand the looks of pity and i cant hide the pain in my face. i cant pretend im ok. because i know my family and i will never be the same.
thank you for your kind words

lani

Go_go_Gi_gi
Posts: 84
Joined: Aug 2011

Lani,
You have no reason to feel guilty--in God's love and provenance, hold your head up to receive His love, compassion and encouragement. What a wonderful resource and support you were to your grandmother. To have the Psalms read to her providing peace, comfort and the love of God and you, Lani---You are precious in His site---May the Lord grant you peace, strength, encouragement and support during this most difficult time for you. Your grandmother will always be with you in spirit and with many wonderful memories. I'll continue to pray for you as you traverse the paths of grief-- knowing that there is hope and life after. Many blessings to you. Susan

lani812
Posts: 22
Joined: Jul 2011

its been a week an hr from now. i see her in my dreams. i can hear her in my head. i had life smile and life my life as if it didnt happen. but i cant forget her. i keep telling myself that i tried everything to save her. i reread my first post on this long n i was excited to battle this thing. i havent spoken to my mother in a week. im ashamed that life went on without her. i want her to know that i didnt forget her. i was to go thank her oncologist sometime soon but im not ready to walk in there yet.she was such a beautiful person. i remember telling myself that i wouldnt let go of her hand until i handed her to god and i did it. but i never thought about how cold and empty my own hand would feel after. i should probrably be writing this in the caregivers blog but i dnt like speaking to others that have gotten over their grief. im not sure i ever want to have random moments when i stare into space and remember her laugh. its been hard to get back on track with school. its difficult to have some much time on my hands. i feel like i thought i was ready and now i just want to close my eyes and be able to call her and have her answer the phone. ive gotten so good at pretending im ok
-lani

jimwins's picture
jimwins
Posts: 2111
Joined: Aug 2011

"i remember telling myself that i wouldnt let go of her hand
until i handed her to god and i did it"
YES, YOU DID - I want you to know how beautiful that is!
It honestly made me cry and not just from sadness. I want you
to know how special you are.

There's not much I can say right now to make you feel better, Lani
but trust me, it will get better. Grief is a process and there is
no right or wrong way to grieve or set time limit. I think it's
pretty individual.

Know you are always welcome here.

Hugs across the Internet,

Jim

forme's picture
forme
Posts: 1162
Joined: Aug 2010

Hi Lani

Your post says it all. It's ONLY been a week since your beloved Grandmother passed. You are still in the new, deep part of grieving. It takes time.
There is no rule to the amount of time it takes a person to move beyond grief. Everyone is different.

My mother in law passed in January, we spent everyday of the last few months of her life with her. I was with her almost till the end. I had to go to Texas the day before she passed. That was a very hard trip to take. But I needed to go for my health and she wanted me to go too.
I miss her very much, but time has eased the pain of her loss. Knowing that we did all that we could to help her find peace in her last months, has helped us with her loss.

Your posts tell of your devotion to her also. In time you will find comfort in knowing that you gave her all that you could and that brought her great comfort and peace.
She was loved by you and you by her.

You don't need to pretend that all is okay. You have suffered a great loss. Allow yourself time to mourn and to heal. Your Grandmother would want you to go on with your life. To be happy and fullfilled. Do not feel ashamed, feel proud that you were able to give so much of yourself to her.

We are here for you and we understand.

Huge (((hugs))) to you in your time of grief.
Lisha

scuttlebug11's picture
scuttlebug11
Posts: 175
Joined: Jun 2011

lani' i am so sorry for your loss, it will get easier. A drunk driver hit and killed my big sister when she was 13 and i was 9 i still miss her and i think about her but i know i will be with her again, with God, and that does make it easier God will be with you help you thru this. blessings denise

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anliperez915
Posts: 772
Joined: Sep 2011

I'm really sorry to hear that your abuelita didn't make it...I was reading all of the posts since the beginning, and I wish things would have turned out differently but we have to make the best of things and you know what you will cry when you want to not when other people expect you to...my mother passed away 2 years ago from the H1N1 virus it was very unexpected and I wish I could have had more time with her to tell her how much I loved her...I think that you told and showed your gramma how much you loved her and she knew it, so don't feel guilty and don't feel surprised when a year or two from now you are still missing her and you find yourself crying...I know how it feels...

XOXO;

Sincerely,
Liz

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