jmoneypenny

Dear Jilly,
So sorry for the loss of your mum – I know first-hand how heartbreaking it is. Don’t worry about taking anyone’s hope away – just post whatever you want in the “remembrance” section – we all have our stories that need to be told. I wish you some peace and comfort in the days ahead.
-Joyce

Yes, it’s always wise to be vigilant about possible genetic links – I know when my daughter got the new, required hepatitis shot I was thankful the authorities were aware that hepatitis is on the rise in a very alarming way – but many parents are boycotting the shots because they think they’re unnecessary. I read somewhere that in Asia there are about 1 out of 5 people who have some kind of hepatitis and because of immigration and people traveling there more, it’s really becoming a problem here, too.

My mother had autoimmune hepatitis so I think in her case the autoimmune problems may have more of a genetic link. In any case, I cherish my liver every day! Sounds funny, but you can’t take these things for granted.
Joyce

Hi Michelle,
Sorry to hear your mother is not feeling well. The flu-like symptoms and fever are sometimes caused by “tumor fever” – my mother had a fever every day at around the same time, but it went down with Tylenol or Advil. I guess it’s just the body’s way of trying to fight the cancer. Very important to make sure your mother drinks enough water so that dehydration from the fever doesn’t make her even more tired and sick.

As for the fluid in the abdomen, if it’s ascites, it can be a bad sign but not always. Many people on this board have the fluid drained or take diuretics (again, make sure you keep hydrated on diuretics) and the swelling goes down. I would ask your other doctors if you have any, or get another opinion as to the options available. It’s easy to get discouraged but there may be some answers out there.

Sorry I don’t have the answers but I’m thinking of you and hoping for the best – I’m sure someone else here will have some words of wisdom for you.

All the best,
Joyce

Hi Liz,
What a story – how horrible for everyone involved! I am the younger sister like you, yet I was the one who took care of my mother the most (stepfather and father are both dead), yet I would NEVER THINK of putting the guilt on my sister for not being there – she was further away and couldn’t get away from her job and that’s just the way it is. Everyone does what they can. Hopefully as the years pass, you and your sister can be friends again – it’s too soon to give up all hope on her. I know because my sister and I barely spoke to each other until we were about 25 years old and now we’re really close.

Although you say you already know it, let me repeat the truth to you: Your mother WANTED you to keep having a life, to go to school and make her proud and come home and read to her and make her happy in your success. I went to France for a year in college and I never even knew until a few years later that my mother sat down and cried right after I left and had panic attacks the whole time I was gone. But she was my mother, she loved me UNCONDITIONALLY as yours did, and she would NEVER tell me to give up my dreams or my happiness. That’s how mothers are – you’re so lucky to have had a great mother who supported you, and you supported her, too, in the ways that came naturally to you. Plus, you were so young – what did they expect you to do????

I hope time heals this wound for you. You must be missing your mother terribly – I know I miss mine more than words can say. She was the one who understood everything, especially the family dynamics, and she kept everyone together. Your mother sounds like that, too. What a great woman – I’m sure she would be proud of you.

Joyce

Dear Liz,
I feel so much for you, especially that you’re so young to have lost your mother. I lost mine last year to this horrible disease and I was 40 and I still feel like a little orphaned child. My mother was brave like yours, and just worried about those she left behind, especially my 4-year-old daughter. The pain will never go away, but your memories and your “mommy journal” are great ideas to deal with it.

I, too, get angry at those who don’t appreciate their mothers, and I think “Just wait until they don’t have a mother anymore – then they’ll understand how much they missed.” It may be mean-spirited, but it’s part of grieving. Sometimes you just need to talk to people who have been there and know exactly what you’re feeling. Other people can seem like aliens sometimes, because it really is unimaginable until it happens to you. And I was realistic, as you were, and knew exactly what would happen – but you’re just NEVER prepared for this kind of loss. The chemo was too harsh on my mother, also, but I try not to have regrets because I think it was just too late in the game for chemo to have any effect on my mother’s condition.

The last days and hours of your mother’s life will always play through your mind to make you suffer – but the good memories come through, too, and give you solace. As others said, I know your mother would be proud of you and all you’ve accomplished – and you know in your heart that you did everything for her and that she loved you and appreciated all your care. I know it’s hard not to beat yourself up about what you could have done, but you know you were a good daughter – I can tell you were a GREAT daughter, and you should be proud of yourself as well as your mother.

I grieve for your loss and I hope you’re able to attain some peace – sometimes just writing it all down when you can’t connect with others really helps. You will never forget your mother, so she lives on in you. Did you know, when I was pregnant, they told me that the ovarian egg that was fertilized and became my daughter was given to me by my mother and she carried those eggs inside her while I was in the womb. I can’t exactly express it as beautifully as it seems to me, but that connection between mothers and daughters and granddaughters is amazing.

Much peace, love and hugs to you, and congratulations on making your mother proud,

Joyce

Hi Kate,
Nice to hear your smiling e-voice again! I just wish I was feeling verbose so I could win the world’s record for the longest post and put all of you to shame!

I’ve said before how much I love your Mum, Kate – and like Jeff said, that video of her really struck me. I even showed it to a few family members, who probably thought “Why am I watching this video of a woman I don’t know?” But it’s beautiful and inspiring.

Glad to hear you’re collecting all the precious memories. I still have work to do on that score.

All the best!

-Joyce

Dear Sophie,
Welcome – I’m sure you’ll be able to find answers to many of your questions here.

I’m not that knowledgeable, but I know that the fact that they’re looking at resection for you means there is probably a very good prognosis for you. They won’t even consider resection for most people, or sometimes it takes 2nd or 3rd opinions before the docs will consider it. Resection is definitely the best way of beating this disease, and if you’re a candidate for that, the ever-wary doctors must see a lot of hope for you. Don’t give up hope, don’t get toooo discouraged (though it’s hard at times) – there are people on this board who were given a terrible prognosis and they’re still going five or ten years later.

Best of luck to you,
Joyce

Dear Michelle,
I’m sorry I don’t have the answers to any of your questions – I do know that you can get very high CA19-9 numbers with this disease but that can be changed so I wouldn’t want to tell you it’s necessarily a bad thing. You mentioned you’re looking for answers and I can empathize with you completely. HOw is your dad doing now? I hope he’s feeling a bit better.
-Joyce