Trying to figure all of this out!!!

tilo · Regular Joined: 27 Apr 2006 Posts: 21

Hi everybody,
I am new here, and have been reading the previous posts relating to liver cancer... however I am still at a loss... my grandma has liver cancer, and a mass in her lung which they just tried to biopsy again yesterday. Unfortunately, when they punctured her lung, it collapsed a little, we are just waiting to hear if it is healing itself or if further procedures will have to be done. I am so confused, the doctors haven't even referred us to an oncologist yet, she has been in the hospital for three weeks today. She is getting weaker by the day. She just seems to be slipping each day. We haven't gotten any real answers at all yet!! I know our time is limited, but we havent' even gotten any prognosis. We are very frustrated, my mom is with her all the time, and I am with them whenever possible (I have three small children, and live 1 1/2 hours away) We just want some answers, can anybody help me... I guess I don't even know what I want help with... I'm at a loss. Grandma doesn't want any further procedures, and they told us that surgery is not an option, and chemo etc. isn't really either. Nobody has told us she is palliative, we just know it. I read some posts about hospice, what is that, and how do they help?
Thank you for your time, I really hope someone will talk to me abou this.
TILO

MPapailiou

Hi Tilo...
I'm sorry for your grandma.
I'm not a doctor, my mother has liver and lung cancer and that's why I'm here. I can understand your confusion since you don't have any clear answers from doctors. Maybe you should insist on having an oncologist to evaluate her condition.
On the other hand, the oncologist could say too that all she needs right now is palliative care, which means everything that could make her feel as comfortable as possible - painkillers, medicine for specific symptoms, etc.
Hospice is a service that can send to you nurses to help you take good care of your grandma at home, if you decide to take her there (or so I have understand from the posts, because I live in Greece).
Have faith, I wish you strength.
Nest Wishes,
Mandy

tilo · Regular Joined: 27 Apr 2006 Posts: 21

Thank you for your response, I am clear now that all we need is palliative care... grandma phoned me and told me that she is finished with everything. The dr's had suggested maybe they put in a 'balloon' of some sort to help her lung (since it collapsed a little) after the biopsy procedure and she has said no. She is tired and doesn't want anything further done... she asked that I be with her and my mom for a consult with the doctor to tell him she doesn't want any more tests etc.
I am so sad this morning, I knew this wasn't good, and I knew I was going to lose her, and though I respect her wishes, I don't want to see her suffer with her breathing too on top of everything else.
My grandma, mom and I are all so close, she helped raise me... my mom is so upset and I want to comfort her, but I am so upset myself that its hard for me to be strong. To be truthful, its much easier to be strong when I'm with grandma... maybe she gives me strength? I'm so glad that I found this forum, because even if nobody responds to me, its therapeutic to write how I'm feeling.
Thank you for listening, my heart is with all of you dealing with these things...
Tilo

seage · Regular Joined: 19 Jan 2006 Posts: 20

Hello tilo,

I am an advanced liver cancer patient myself and hope you don't mind if i put in my 2cents on your grandma's case.

I'm not a doctor either and can provide you with no medical info. However, i would advise that you get it from people who can, ie. from your grandma's current doctors as well as oncologists, even try doctors from other institutions. My own experience tells me that doctors of different disciplines (eg. surgical, medicine, oncology) and from different locations/institutions can provide different avenues of treatment. Things they know and are aware of could be different and some may know an avenue of treatment that the rest may not. Insist on getting information pertaining to your grandma, do not be shy or brushed off by them - you have a right to know and it's a life-and-death matter, dammit!

Gather all the info then decide with your grandma and family, what is the best course for her. I understand she may not want more "medical procedures" but these are just consults, you don't have to do any tests or treatments at once - you can always go home and think about it (but if it's just simple blood test, then perhaps she can do so immediately).

In the end, what your grandma decides is up to her - respect her wishes. But at least find out what are your options first instead of resigning to one medical opinion. Weigh the potential benefits vs the risks and discomfort/pain involved. Perhaps there are treatments that she find acceptable? If not, then at least you know that for sure.

Don't give up just yet, help your grandma find the best course of action. Good luck!

tilo · Regular Joined: 27 Apr 2006 Posts: 21

Seage,
Thank you so much for your post, it is helpful to hear from others who know the road we are on. I agree with you that all avenues should be exhausted, however, my grandma has chosen to forego any further treatment. She has been referred to the oncologist, and is now registered with the palliative care team. They are getting her ready to go home in a few days, we are happy that she will be at home, but nervous at the same time about caring for her when we get there. We are taking one day at a time and had quite a nice day today actually... we took her outside for the first time in almost three weeks!! I think she enjoyed it, but tired very quickly.
It makes me feel better to read the posts here and to hear from some of you, thank you again... its just the little bit of support I need to keep me going (informed and encouraged!)
Tilo

tilo · Regular Joined: 27 Apr 2006 Posts: 21

I guess this has become somewhat of a journal exercise for me, however, if any of you would like to share your similiar experiences with me, I would truly appreciate it... the doctors are trying to talk grandma into letting them put a balloon? into her lung to help her breathe easier.. I'm not sure what she's deciding although she made it clear a few days ago that she was done with procedures. They had talked about sending her home, but I think it will still be a while. They put a stent into her liver to drain the bile two weeks ago.. it was draining well, but now doesn;t seem to be, they were unable to get it all the way where they wanted it because of the tumor, and this morning, the whole damn thing fell out!! How does that happen?? It seems to be a roller coaster...
cancer sure does affect the whole family!
Also, is anyone has any advice for me, I'm at a loss as to what to tell my daughter, how much detail, do I prepare her for losing grandma... I don't know what to do!!
thanks.... Tilo

tilo · Regular Joined: 27 Apr 2006 Posts: 21

We are having very difficult days... grandma is getting weaker each day, her stomach is so big, it is pushing up on her lungs, and she is having difficulty breathing. She is coming home on Friday, we think.. she will be at home and we will be taking care of her. My heart breaks a little more each day, I am so sad... I am not sure how much longer we have with her, but I am less optimistic each day. I hope she does not suffer too much, I cannot bear to witness it....
I hope somehow my posts have supported some family who is going through the same thing... I would love to hear back from someone, I feel so alone right now
thanx..... Tilo

MPapailiou

Hi Tilo,
Don't give up! Doctors can help your grandma feel comfortable, no matter what the problem is. Keep smiling and try to make your grandma more relaxed. Humor sometimes help.
My mom is under morphine right now, she has jaundice, almost doesn't eat, and she sleeps 20 hours per day - but at least she is calm, has no agony and when she is awake she makes so much fun of her situation and we lough a lot. Try keeping her spirit high, no matter what.
Best wishes,
Mandy

tilo · Regular Joined: 27 Apr 2006 Posts: 21

Thank you Mandy,
What you have explained seems to be about where we are now... the morphine is helping now, and she is sleeping a lot!! Grandma is now home from the hospital and in the care of the palliative program. She seems more content at home...
Thanks again for the encouraging words... I will keep you posted
Tilo

Lisa Lewis · New User Joined: 13 May 2006 Posts: 2

Hey there Tilo, im going through the same thing with my mom(in-law), She has inoperable tumers all over her liver and it massed to her lungs, she lost alot of her body wight very fast and they sent her home and hospice was there to help. her pain is being treated with liquid morphine but she is still in alot of pain from her liver being so enlarged. she hasn't eaten anything other than alittle watermellon and stawberries in the last 13 days and her intake of water is dwindling to about 8oz per day but she is hanging on. We dont see her living through the weekend. It is so hard to see someone you love slowly dieing. We can relate to what you are going through, so from our hearts to yours and your familys best wishes and our thoughts and prayers are with you.

tilo · Regular Joined: 27 Apr 2006 Posts: 21

Thank you Lisa for your kind words and understanding thoughts. This is so very hard on the whole family. You're right, we are in the same boat, and each time I think we are about to lose Grandma she somehow hangs on... this is such a rollercoaster of emotions. The morphine isn't even keeping all of the pain away anymore, my heart breaks....
I really appreciate your support and please know that since I've begun posting here, I am truly thinking of all the kind people dealing with these same experiences who have shared with me. My thoughts are with you... good luck in your journey... please keep us posted,
Tilo

Lisa Lewis · New User Joined: 13 May 2006 Posts: 2

Thankyou for your suport, We feel the same way , Mom has her good days and bad days and we were sure she wouldn't last the night and then the next day she seemed fine. This rollercoaster is taking a big toll on my husband .....I dont know what elses I can do for him, I feel so helpless. Anyway she has lost more weight than I thought was possible and has a major infection on her thumb, Im thinking it must be her immune system failing to fight the infection. they have a topical solution to rub on her belly where the liver is ....it just keeps getting bigger. And im sorry I was wrong on my last post, she is taking liquid oxycodone and methadone for the pain. How is your grandma? Thanks for the posts, they really help me stay grounded, and feel less alone in all this.

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