Earlier it didn't work for me - now it does! Thanks for the link, interesting study.
Re: ICC : analysis of 44 consecutive resected cases. (5 replies, posted in New Developments)
Re: ICC : analysis of 44 consecutive resected cases. (5 replies, posted in New Developments)
Darn - the link doesn't want to work for me...
Thanks everyone! Yes, she was an incredible lady. I sure do miss her.
I used Microsoft Publisher to add the text and calendar image to the photo, then saved it as a JPG file.
Oh Susan, I am truly sorry to read about Randy's passing. Jonathan has a new guardian angel in heaven watching over him. Sending you prayers for some peace during this time.
I changed my Facebook profile picture to honor my Mom and bring attention to CC awareness month. I'm not sure how to post a link, so I hope this works!
http://www.facebook.com/photo.php?pid=2 … 1436424036
Isn't that a neat picture of my Mom? She LOVED the beach, this was taken in Outer Banks in August 2009, just a month after her resection. We used this same photo for the prayer card at her memorial service.
With tears in my eyes, I'm saying a prayer for your family right now.
Thanks for all the replies.
My intent for posing the question was more to get feedback on what changes people have made to their diet and lifestyle. I realize that CC is not hereditary. But losing my best friend, the woman who gave birth to me and raised me and loved me, makes me reflect on my own life and health.
I can't do anything to bring my mother back. But I can make changes to give my own body a better chance at being healthy, lessening the chances of me leaving my own children when I'm 64 years old.
I wasn't sure where to post this because it's a question for those of us whose family member died of CC. But I didn't know where else to post it, and since it's addressing family I thought this would be the best place.
If you had a close blood relative lose their battle with CC, do you or have you considered making lifestyle changes to improve the health of your own liver?
I've always read with great interest the posts on these boards relating to diet, healthy supplements and alternative medicine ideas. Because my own mother succumbed to CC, I've been thinking of my own liver and how I can protect it, or at least improve the chances of maintaining a healthy liver.
Thoughts? Ideas? Input?
Great website! I have trouble with "don't avoid me." We're approaching 4 months since my sweet mother died, and friends don't talk to me about her at all. I WANT them to talk about her. Even my husband doesn't. I know it's because they don't want to upset me, but I'd rather talk about her and my memories of her.
No experience with receiving platelets because my Mom never needed them. But I'd like to give a plug to platelet DONATION. My husband did this for years. I don't know if platelets are in lower supply than blood, but I do know that he was there for over 2 hours each time, so I think it's a bit more of a time committment on the donor's part.
I'm glad I read this thread. It's given me an idea to honor my mother, all those on this board touched by CC, and cancer patients in general - start donating platelets, and encourage others to do the same!
I wanted to re-post this poem that someone posted here awhile back. I love it, it really spoke to me.
From a book of blessings called "Benedictus" by John O'Donohue - Irish Poet & Philosopher
When you lose someone you love,
Your life becomes strange,
The ground beneath you becomes fragile,
Your thoughts make your eyes unsure;
And some dead echo drags your voice down
Where words have no confidence
Your heart has grown heavy with loss;
And though this loss has wounded others too,
No one knows what has been taken from you
When the silence of absence deepens.
Flickers of guilt kindle regret
For all that was left unsaid or undone.
There are days when you wake up happy;
Again inside the fullness of life,
Until the moment breaks
And you are thrown back
Onto the black tide of loss.
Days when you have your heart back,
You are able to function well
Until in the middle of work or encounter,
Suddenly with no warning,
You are ambushed by grief.
It becomes hard to trust yourself.
All you can depend on now is that
Sorrow will remain faithful to itself.
More than you, it knows its way
And will find the right time
To pull and pull the rope of grief
Until that coiled hill of tears
Has reduced to its last drop.
Gradually, you will learn acquaintance
With the invisible form of your departed;
And when the work of grief is done,
The wound of loss will heal
And you will have learned
To wean your eyes
From that gap in the air
And be able to enter the hearth
In your soul where your loved one
Has awaited your return
All the time.
I am so sorry. This time is so rough. The funeral is over, you feel like everyone has gone back to "normal life." But when someone loses their mother, there is no "normal life" anymore for us. It makes you want to scream - "HELLO - I'm still grieving here!" The thought of the earth still being able to spin without my mother on it was (and still is) unthinkable to me.
Right after my Mom died, everyone on these boards said each person grieves in their own way and on their own timeline. For me, getting back to working helped because it kept my mind occupied. But a rough patch for me was right where you are now, then I started feeling human for a few weeks, then it got tough again... you see the pattern. A rollercoaster. And that's ok. WHATEVER you're feeling is ok. Your pain is real, and it's so raw right now.
Like you said, just take it minute by minute. I'm sorry I don't remember (I've been away from the boards for awhile) - do you have siblings that are sharing your grief? My sister is one of the main reasons I'm making it through each day, week, month since losing our Mom. Seems like when she's having a down day that I'm up, and vice versa.
I am so sorry. Sadly, so many of us here can relate. I was in your shoes last summer with my own Mom. I'm sure it was a hard day for your family.
If your Mom wants to stay home, hopefully they can set her up on home hospice, that's what my Mom did. And if your hospice org is anything like ours, you'll be blown away - they were superb. They told us their purpose was to make sure that Mom was NOT in any pain. Got her all set up at my sister's house with an awesome hospital bed with a special comfort mattress on top, all the meds she might need, a home health aid assigned twice a week to help with bathing and hair washing, a chaplain that prayed with Mom and did reiki once a week, and a social worker. Everyone involved with hospice are amazing people.
Concentrate on her comfort, and on making memories. If she's able, get her to tell you stories, memories, and write things down. My Mom had planned to write a letter to each grandchild, but never got the chance. Don't sweat the small stuff in life right now, just be with her and be there for her. I can tell you, you will be making memories that will stay with you forever.
I agree with everyone - go now. I don't know where you're going, but just look into the facilities in the area in case he needs any medical attention, and take his records and a list of meds with you. Enjoy his 60th birthday celebration a few months early!
Every case is different. But my Mom stopped palliative chemo last August. The next day she booked a cruise for the whole family - her, my Dad, us 3 kids, spouses, and 5 grandkids. We left on September 9. She died 8 days after we returned from the cruise. Traveling was a little tough, as she did begin to decline while on the cruise. (We're lucky that my sister is a hospice nurse.) But it was so important to her, and the memories we all have from that trip will be with us forever.
Go with your gut feeling!
I called my father today to see if he wanted to spend the day together tomorrow. He's in the mid-stages of dementia, and it's his 70th birthday, so I thought it'd be fun for us to hang out, go to lunch, etc. Anyway, when I called his answering machine picked up. The answering machine that used to have my mother's voice on it. Well, he got new cordless phones and I guess when he unplugged the answering machine, it defaulted back to the generic message that comes on the machine. I'm so sad that my Mom's voice isn't on there anymore!!!!
I am so so sorry to read this news. Please don't be hard on yourself or have expectations on how you should handle things. This is such a tough time, you have to take one hour at a time. Hang in there and just do the best you can.
I'm truly sorry for your loss. I love what Lainy always says when someone's mother dies - mothers never really leave their children. I pray for you to find comfort in her memories and in time that you will see evidence that indeed she will never fully leave you.
There are no words to explain the sorrow I feel after reading this. Many prayers to Hans and Kris' whole family. Earth's loss is Heaven's gain.
Lainy, I'm glad you're taking care of you. Good reply you've come up with - the new normal.
I don't know if you're like me, but so many people told me how strong I was during my mother's illness, namely my dear husband. It got to the point, even after she had died, that I felt like I still needed to be strong. That's partly my personality, cool under pressure, then fall apart into a sobbing heap once the stress is gone. I realized I had to let myself feel what I needed to feel, and not some facade of what people thought I was all about, and to allow myself to express my grief in whatever way felt right at that particular time. Crying, screaming into a pillow, looking at old photos and laughing through my tears, telling stories about my Mom.
In no way am I saying you're doing this, you do seem like one of the most grounded people I know. Just something that I wasn't initially aware of that was happening in my own head and heart. You're so blessed (as am I) to be surrounded by loving friends and family.
I've often thought about, once I'm more comfortable with my grief, that I'd like to volunteer with the home hospice organization that cared for my mother. I'm just not ready for it yet.
Yes yes, the rollercoaster. I think being just 6 weeks since diagnosis, it's probably still like the steepest, tallest and fastest coaster in the world. My mother lived for 16 months after being diagnosed, and I can tell you the rollercoaster is always there, but eventually begins to be more like a kiddie coaster at the carnival. Still ups and downs, twists and turns. But often you can see what's around the corner and know what to expect. Or you've been on the coaster so many times that it just isn't that scary anymore. You begin to understand the lingo the doctors use. You can read blood work lab reports and actually know what they mean. You begin to recognize symptoms your Mom might be having because you've seen them before.
But I know, sometimes you just wish it was the carousel.
I agree with Lainy's advice - find something that's a distraction or outlet for you. When my Mom was in the hospital for her resection last summer, it was a 45 minute drive each way, sometimes more than once a day. The new Dave Matthews Band CD had just come out, so I CRANKED it up the whole way home and sang my heart out. Same with this past summer, once she was on home hospice at my sister's house, it was a 20 minute drive, so again I'd roll my windows down, crank the tunes and sing at the top of my lungs.
Hang in there - you're obviously a super-duper daughter to your mother!
Our first without our mother. I had my father, my sister and her family, and brother and his son to our house for dinner, and the day was actually very nice. I did a TON of food prep on Friday, so I could just enjoy my family being here Saturday. The kids had a ball, the controlled chaos of the 5 of them (ages 4-11) opening gifts was really fun to watch. Delicious dinner and nice conversation, and we toasted my Mom and I read two quotes:
"Missing someone gets easier every day because even though it's one day further from the last time you saw each other, it's one day closer to the next time you will."
And this one, because butterflies had such a significance for us this summer during my Mom's time on hospice:
"A butterfly captures our hearts
from the moment the appear.
They are vibrant and graceful
as their presence lifts our spirits.
Gone much too soon,
they will never be forgotten."
I really thought Christmas night I'd have the meltdown, once everyone was gone and the kids were in bed and it was quiet, but I was ok. Going to church yesterday was actually hard. It was the Feast of the Holy Family, and the homily talked a lot about the importance of family, parents being role models for children, etc. They sang Silent Night after communion (the choir at our church is outstanding) and the last verse the piano stopped and it was just singing. It was absolutely beautiful, and out of nowhere I started sobbing. I felt my mother's presence so strongly there in church, but it was a very sad feeling this time. God love my son, he just hugged me. So I got my cry out, it lasted only about two minutes.
My Dad, bless his heart, seems to be ok. With his dementia progressing, he still remembers Mom died but doesn't dwell on this being our first without her. I think my little brother is handling things well in general, though he's divorced and a single Dad to his sweet little 5 year old son, so he has lots on his mind anyway. My sister seemed to be ok too. She said it was the first non-stressful holiday in a long time for her, I think because she wasn't hosting or cooking, so she was able to relax more and just enjoy family time. Like all of us who are grieving, she has good days and bad days. I am thankful Christmas was one of her good days.
Hope all others who celebrated their first holiday without their loved one made it through ok as well.
Thank you, Lainy! Even though my mother lost her battle to CC three months ago, I am still so drawn to this website and visit the forums daily.
Your poems, and the way you write in general, always remind me so much of how my own mother would write. Yet another reason I like you so much!
Wow Michael, you totally summed up how I feel when you said, "This sadness is like waking up with a buzzard on my shoulder which I'm trying my damnedest to not always pay attention to but its very hard." That's exactly how I feel every morning!
Sorry to hear about your rough patches, but glad to hear about the positives that have been going on for you. Hang in there - that's all we can do!
So we lost our dear mother on Sept. 26 at the age of 64. I've had ups and downs of course. Christmas has always been a huge deal for our family, even more so once the grandchildren started being born 11 years ago. My Mom has 5 of them now, ages 4-11.
I've been ok the last 2 weeks or so, probably pushing some of the grief into my heart's recesses a bit, for the sake of my kids. And I'm really ok with that for the time being. I've shopped, decorated, and I started wrapping gifts yesterday. I'm hosting my side of the family for dinner on Christmas afternoon. I LOVE to cook and am really looking forward to the celebration.
But I'm worried about my sister. She's really having a rough time this holiday. They got their tree up 2 weeks ago and she still hasn't decorated it. And she's always been more into decorating for Christmas than I ever have. I just spoke to her on the phone and she's very weepy today. I tried to tell her to think how displeased Mom would be if she knew she was acting like this, not getting into the Christmas spirit. And I reminded her of Mom's "sign" to me last week, when she made my daughter's Hallmark Christmas book spontaneously speak to me.
Does anyone have a poem, inspirational story, anything that I could share with my sister to help her? It breaks my heart that she's so down, and even more so that I can't help her. (I'm a total Type A, solutions kind of person, always have been.)
I think this is a great article.
Tips to help grieving hearts during holidays
Ready or not, here they come: whether you are ready to face them or not, the holidays are approaching the same as any other year. For most, they represent a time for families to gather, and for Santa to spoil children, and for reflecting on the blessings of the year past. It
Lainy, it sounds like everything is ready for Friday! I think funeral Masses are beautiful. I'm glad to hear about your wonderful friends looking out for you.
The cologne on the pillow has me in tears! My Mom's room (actually my old bedroom where she kept all her clothes) still smells like her perfume, and I keep begging my Dad to keep the door closed so the smell stays in.