Where is this going?

Nat · Posted: Sat Dec 15, 2007 4:16 pm Post subject: Where is this going?

Grandma had lung cancer 4 years ago. The chemo was awful, but she has always been a fighter and finally got the all clear. Just as my grandparents lives were getting back to normal, we found out the cancer hadn't quite fully died and a few cells were still multiplying. She was given tarceva (sp?). Before we had the re-diagnosis, she was happy, healthy, feeling great. We had no idea anyting was wrong again. Now, just weeks later, she is a shell of a human being, worse than before.

As a side effect of the pills, she has constant diarrhea and barely eats. we have trouble convincing her to take a bit of complan. Her hair is now falling out and her skin is perpetually dry and itchy and this is down to basically, starvation. Whenever I ring, grandpa answers and says grandma is asleep. Mum is converting a room of her house in the hope that to move them out of their bubble of pills, cancer and side effects will drag her out of the depression. but, i find it hard to be so positive. Of course, I havent said any of this because it won't help, but I think she has given up on us. Its very out of character, she lives for her family and was always so happy, and good for her age. She is the last person I would expect to take to her bed and wait to die.

I just can't feel that great about these pills. Even if she does recover again, it will just come back again. I know she's old, and old people die. I have never lost someone close to me before but I know it's coming. I kind of wish we didnt have these pills and we had just let the cancer run its course basically. It sounds HORRIBLE, but she was a normal person when we got the diagnosis, and we might have stood a chance of enjoying the last of our time with her Crying or Very sad

now she is just a zombie.

sorry this has been a bit rambly, but i dont know what to say or do. i feel like everyone puts on a stupid act for me because i'm their little girl. But I'm 21 now.

In · Posted: Sat Dec 15, 2007 5:50 pm Post subject: Re: Where is this going?

Nat,

Sorry about your Grandma. It's so hard to see a love one suffer. All i ca suggest is to work with her medical team, maybe the doses is too much? Or working to well Confused

Inica
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Vee Smith · Moderator Joined: 12 Feb 2006 Posts: 633 Location: UK

Hi, Nat - I agree with Inica. Your gran's oncologist can adjust the dosage of Tarceva.

As to eating problems [anorexia is another of the drug's side-effects], ask her doctor for a prescription of "Ensure", preferably "Ensure Plus" - there are several flavours, and it is much better that Complan in this situation.

She should also talk to the doctor about something she can use on her skin.

Nat · Posted: Sun Dec 16, 2007 4:50 pm Post subject: Re: Where is this going?

Hi, thanks for the replies - I will get on the case with the ensure, her skin i think would improve if she was eating, but she does have everything going for that already. Thanks for that Smile

Nat · Posted: Thu Dec 20, 2007 4:09 pm Post subject: Re: Where is this going?

I think she has given up. I went to see her yesterday. She is going bald and not getting out of bed. She wont let us kiss her because a nightmare has made her paranoid about rabies! Before, she was always really close to me and loved a hug etc. She's a different person now, like she's gone already. I spoke to mum about it and she agreed. We think she is just hanging on til after christmas and when they move in, so she knows grandpa will be looked after Crying or Very sad

She had tried the ensure by the way and didnt like it.

ksplat · Posted: Thu Dec 20, 2007 4:21 pm Post subject: Re: Where is this going?

Dear Nat
I am so very sorry you are going through this dreadful turmoil in regard to your Grandmother.
Can you talk to your Gran about your feelings in regard to Gran "giving up"? I think you should open up to her with your feelings & be totally honest with her. Remind her of how she was a few years ago when she was fighting this same battle, AND CAME THROUGH IT! Tell her the family is not giving up on her.
This is such a difficult time for you & your family. Please know my prayers & thoughts are with you all.
Thinking of you.
Cheers, Aussie Angie.
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Nat · Posted: Fri Dec 21, 2007 4:37 am Post subject: Re: Where is this going?

Well, it's my instinct to be really up front about everything and talk it through, but she's not like that. She seems genuinely terrified of dying, hence all the nightmares about diseases and things, but at the same time, she refuses to do anything about it or talk to anyone. Grampa is a vicar, has been for years and he says he's upset because death is one of his specialist subjects and he would love to talk to her but she just won't allow it and he doesn't want to make her unhappy. Also, they still see me as their little girl and don't think I should be involved I don't think? Or something like that, I just get a vibe.

I would like to be honest, but I don't want to upset everybody else.

brainman · Posted: Fri Dec 21, 2007 10:31 am Post subject: Re: Where is this going?

Hi Nat, I am truly sorry about your grandmother's condition. It sounds like the two of you were very close until all of this started. Has she had an MRI to see if the cancer has metastasized to her brain? That could be one of the causes for her current mental status. It is worth asking her medical team about anyhow.

You and your grandmother are in my thoughts and prayers.
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Nat · Posted: Thu Dec 27, 2007 5:56 am Post subject: Re: Where is this going?

Thanks for the thoughts - she had a scan thing, dont know if it was MRI, but they said it has definately not spread anywhere (well, that was a few months ago anyway).

But, we've had a bit of a development. One xmas eve, she had a fall and bashed her ribs. By xmas morning she was in hospital and I went to see her and was shocked by her condition, the worst ive ever seen her. She hadn't seriously damaged her ribs thank goodness but it transpired that she had been keeping a urine infection secret from the nurses, and grandpa had been going along with her wishes. So they have her on anti biotics now but they also gave her a drip and literally, within hours he was a different person, she was bright and lucid, telling people what to do again! I couldn't believe the difference and was able to relax at hom knowing she was in safe hands at hospital.

Its now decided that grandpa cannot cope looking after her entirely on his own even though he thought he could, so we are looking into getting some carers in. Grandma is eating at the hospital - which she would not do for grandpa so we obviouly need an outsider to come in and make sure everything happens.

But i do feel much better because she seems happier.

brainman · Posted: Thu Dec 27, 2007 1:06 pm Post subject: Re: Where is this going?

Nat, I am sorry that your grandmother fell but happy that she is doing better. Even without brain mets, cancer changes people... at least for a while until they adjust to the new reality of their life. Sometimes, this takes a long time... just depends on the individual. I am glad to hear that your grandmother is at least they found out about the infection and treating it is making her feel so much better.

I know how hard it is to care for a "picky eater." I was the primary care provider for my father for several years up to the time of his death. I could fix a lot for him, but sometimes he would not eat for me. We finally hired a lady to come of a few hours each day to cook lunch. Not only did having a "guest cook" encourage my father to eat more but it gave me a much needed break.

Your grandmother remains in me thoughts and prayers as do you.

Happy New Year. May 2008 be a wonderful year for you and your family.
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Site Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendoglioma grade 3, same location.
My Story Part 1: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 2: http://cancerforums.net/viewtopic.php?t=8029
Blog http://jimhawkinsport.blogspot.com/

Vee Smith · Moderator Joined: 12 Feb 2006 Posts: 633 Location: UK

Hi, Nat - this is the worst of one's loved ones getting old. You feel so helpless about them, and they feel you are not mature enough to offer advice.

I am sorry about your grandmother's fall, but it does seem to have been a blessing in disguise if she is now under proper care and is co-operating, and eating.

In · Posted: Fri Dec 28, 2007 8:31 pm Post subject: Re: Where is this going?

Hi Nat-

They always said that in "every bad- some good comes out of it" ....I always thought that was a load of crap- and people said that to make you feel better Laughing

BUT- in the case of this- the fall help people realise what was making her feel so bad, and got well again. Plus makes people get together and help her more. The carer is a great idea- becuse it'll take the pressure of you, and your grandpa from being the "bad guy"- always pushing and telling her what to do. Razz

This way someone makes her eat- drink and pretty much make her take her crankiness and frustration out on someone else. Wink

Heres to a Great New Year- cheers.
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Thinking of you Inica

**Administrator**

~Nose Cancer~
~Car Accident- Broken Back, Ribs, Spleen
Sternum~
~Continous Cervical Cancer~

My Story-
http://cancerforums.net/viewtopic.php?t=6731

Smile

9 Lives and still kicking Smile

Nat · Posted: Thu Jan 31, 2008 11:05 am Post subject: Re: Where is this going?

unfortunately, not good news. Grandma quickly went downhill again at hospital - refusing to eat. They sent her home and things got worse and worse and eventually she went into a hospice. I hadnt seen ehr since christmas day because shes said she didnt want me to see her in the state she is in. i respected that for a while but, mum and grandpa said it was maybe better for me to see her given how much she has detriorated...

so i went to see her in the hospice and was really shocked. She is thin, no hair, stares at nothing and doesnt really interact. She has decided she doesnt like grandpa anymore and will only cooperate with mum and a select few nurses. She said she didnt know who i was and keeps asking for her (long dead) mum.

Crying or Very sad

I'm so sad I feel physically sick. I cant go to uni because if anyone asks how i am, I'll cry and i dont like to be wandering about weeping in public everywhere. I'm so sad because she really REALLY wanted me to go to uni and become a doctor of something. Now she won't even see me graduate. she was number one fan and now doesnt know who i am. i was the favourite grandchild, she'll never see my children. My sister has had children young and she's seen my niece...but she wont see mine.

I cant imagine she'll hang on for much longer and its such a cruel ending. Crying or Very sad

- shes not on the cancer drugs anymore, shes not on any drugs except anti depressants. The only thing making her ill is herself and its so out of character.

brainman · Posted: Thu Jan 31, 2008 12:48 pm Post subject: Re: Where is this going?

Nat, my heart is breaking as I read your last message. I am so sorry about your grandmother's current condition. You must be devastated! Crying or Very sad

.

I encourage you to keep visiting your grandmother as often as you can. Even if she seems not to know you, at some level, she still might make a connection with you and your life. Tell her about your dreams and your studies. Since that was such an important dream of hers, she might make a connection.

My mother did not live to see any of her great-grandchildren either Sad

. She died in 1998 and her first ggdaughter was born less than 3 years ago. She also missed the graduation of all of her grandchildren. But she was there inside each one of us. I remember holding my first grandchild and thinking about my mother and father Sad

.

Nat, you continue to be in my thoughts and prayers as does your grandmother.
_________________
Jim
Site Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendoglioma grade 3, same location.
My Story Part 1: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 2: http://cancerforums.net/viewtopic.php?t=8029
Blog http://jimhawkinsport.blogspot.com/

Nat · Posted: Thu Jan 31, 2008 1:01 pm Post subject: Re: Where is this going?

Thanks for your support. i will continue to see her, even though its terrible to see whats happening to her Crying or Very sad

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