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I'm sorry to be debbie downer...but to those who have dealt with terminal illness...
I just need to talk to people...I don't know. I'm so exhausted I don't even know what I'm trying to say. Just...when does this stop consuming every part of me? I can do other things, talk about other things...but I don't really think about anything else. It doesn't leave my mind.
I'm finally home after being gone since Thursday. I'm glad to be home, and I had a really nice time sitting at the table with the kids for awhile. We colored pictures. And then the tears just started again. I'm getting worse by the day. I know life will go on, and there are plenty of reasons to be happy. My dad wouldn't want me missing the joy my kids and life brings...but still...it's hard right now.
I know it gets easier as time goes on, but I can't fathom that it gets better while you're waiting. Does it? I'm so worried about my mom and my kids. And him. And I'm just sad and angry. All the things you know come along with it. But it's really really hard.
Again, I'm sorry. I've whined on here a lot lately. I just need people to pile it on.
This discussion has been closed.
Re: I'm sorry to be debbie downer...but to those who have dealt with terminal illness...
Alex (11/14/06) and Nate (5/25/10)
"Want what you have, do what you can, be who you are." - Rev. Forrest Church
Have you thought about counseling? I know for me, it's nice to have somewhere I can vent about stuff and allow myself to feel sad. Doing that once a week (or month if you prefer), helps make the rest of the days a little easier.
I'd imagine there are grief counselors or even support groups for family members who are in your shoes. Would your dad's doctor be able to suggest someone?
I'm sorry your family has to deal with all of this.
((((((((((((((((((((hugs))))))))))))))))) I'm so sorry; grief is so all consuming--I wish I could say it gets easier and that it would stop consuming your thoughts and emotional energy, but I don't think it does for quite awhile. I know you've got a lot of time commitments, but have you looked into some sort of support group, or would that not be a good thing for you (I think its overwhelming for some people, but a very positive experience for others).
I'm sorry you & your family are going through with this; I'm sure I'd feel the same way in your shoes.
*hug*
((Hugs))
I don't have any advice; I just didn't want to read and not post.
Charlotte Ella 07.16.10
Emmeline Grace 03.27.13
Big Hugs! I'm not a regular poster on this board but I have read a little about what you are going through.
My dad was diagnosed in June 2010 with leukemia and died in sept 2010. I had my 3yo at the time and I was 30 weeks pg when he passed away. He was in the hospital with restricted visitors for all but two weeks of his time. I can tell you from experience that it was and still is one of the hardest things I have ever dealt with. I knew there wasn't much I could do for my dad - that was up to the doctors. So that left me to worry about my mom and my kids. It wasnt until after #2 was born that it really hit me that my dad was gone. At the time, I could have written your post word for word. The anger, the saddness and the unknown are all things that consume you during this time.
It does get better but some days the tears flow like waterfalls and sometimes the laughter is the deepest belly laugh I have ever had. So, hang in there.
I'm one of those internet strangers but if you need to chat please e-mail me. For me it was almost easier to talk to a stranger than a good friend.
salisburybride at hotmail dot com
Oh goodness, did his surgery not go well? The last I knew he was scheduled for surgery and you didn't know anything else yet. If you don't mind me asking, did he not receive a good prognosis after the procedure?
I'm so sorry that your family is going through such a difficult time.
Salisbury, thank you so much for your response. I hate that others have gone through this, but it is a comfort to have people to relate to. I will save your email address.
Cleo, when the doctor opened him on Friday, they found that the cancer had satellite lesions that occupy his whole liver. What I understood Friday when the doctor talked to us was that they had cut out the large tumor and used an ablation method on the small cells. Even then, it was equally bad. Anyway, they did not remove any of it. They did use the ablation on it all.
The cancer is called cholangiocarcinoma...started in his bile duct apparently.
We don't have an exact prognosis yet, but a year would be good. He is going to start chemo when he is healed from the surgery in a month or so, which will hopefully extend his time here, but the cancer is not curable. Seeing him in his bed in the hospital...it's just so sad. I have stayed up there all day and night until now. It's hard to be away. I want to be with him and my mom. I want to just be a little girl and crawl in his lap and have him hug me and say everything's okay. I know we'll be okay. I do know that. But it just *** sucks.
The good news is that his body doesn't know the liver has cancer yet. So he will feel good for a little while before it all starts to decline...after he heals, of course. But to know that he'll never be the same...all those moments, you're thinking "is this his last time to _____?"
I can't imagine what you are going through. When my grandma (ovarian C) and my grandpa (pancreatic C) were sick I was still in school so that helped a little. I can't imagine having to put a brave face on for the kids and then explaining to them.
Feel free to vent, cry and whine to us. I'm so sorry you have to deal with this. It's just not fair.
It feels so small to say I'm sorry you're going through this, but truly, I am. I know how much it sucks. I know what you're saying when you say your logical brain knows you need to try and have some normalcy with your kids and family, but no matter what you do, it's just THERE, in your head and heart. I felt so uneasy when I was away from my dad. And even though in the hospital he looked like half the man I KNOW him to be as my dad, it made me feel better to be there and see him. Because he still seemed like the dad I knew who could do everything; and I felt like me being there made him happy amidst all the uncertainty.
(((hugs))) Praying for him and you, defying the odds, and many more good moments together.
Thank you. I'll be praying for your mom and you.
My father died from cancer 11 years ago and it was very, very fast. I assure you, as much as it hurts and consumes you now, it does get easier. As much as I miss my dad, honestly, the waiting was the worst part. I mean, here is this person you love, and you are watching them die. I honestly had the hardest time with that. What do you say? What do you do? How do they feel?
My dad had a rare form of cancer, bone cancer, and the cancer was eating his bones and sending calcium through his body, which made him lose his mind. He hallucinated, saw things, heard things, was just generally not there. It was awful to watch. But you know what? Secretly, I feel a bit grateful for that, because most of the time he didn't know what was happening to him. As awful as that sounds, it was sort of a savior for me. Because, once when my dad was lucid, he realized what was happening to him, and he broke down and cried. I about lost it. My dad, the strongest member of our family, was sobbing. And that was the hardest part for me. He was also a man that loved his sleep and all of a sudden he stopped sleeping, staying up late to watch TV, trying to cram as much living into two months as possible.
So, once it was over, I was sad, I cried and I was scared. But to me, the worst part was over. Now was a chance to learn to heal, and a chance to learn a new "normal". I was still living at home, so I was grateful I was with my mom, but it impacted me more than my sister, because her normal didn't include seeing my mom and dad everyday as she was married and out of the house. So, we sort of went into adrenaline mode, I think. We did as much as we could to keep busy, to keep our minds busy and to make a new normal life.
That's not to say that any of this was easy, and that I still don't miss my dad like crazy, but it fades, and you learn a new way of living and today, I think of the crazy things my dad used to do and just laugh. I cry sometimes, but mostly I smile, and laugh.
I'm so sorry you are dealing with this and wish I could offer more than what I did, but as unsurmountable as it seems, time does heal all wounds. Let me know if you need to talk. Hugs to you!
Thank you appletini. Hearing your experience, along with others, is comforting and helpful to me.
Honestly, I'm relieved we know. We pretty much knew what the prognosis would be, though we thought we had a little longer because we didn't expect it to be as bad as it was. But we knew our time was very limited. The anxiety that built up while waiting for his surgery was awful. I vomited all the time. The moment the doctor told us on Friday, my feelings all changed. My heart was broken, but it was just me and my mom in the consult room at the time. And I was strong for her. She laid on me and cried, and I held my tears back and held her, kissed her head, told her I love her. The things I needed to do. And I held it together as we called the rest of the family in to be told. Everyone was sobbing, and I held it together. I was strong.
I cried with my mom on Friday night some, but held back the tears as my dad was told on Saturday morning. I had some tears as his pastor prayed with him after the doctor left (the pastor had walked in the room as the doctor was telling him). But I held it together as my mom and my grandmas cried on me. As my grandpa sobbed into my shoulder that he wishes it was him.
I even provided the comic relief on Saturday for the family. Stories of things my dad said the night before (he got really mad at his boss for turning off messages to alert him of his guys sales figures for the day and mad at people for not letting him drink coffee and eat cheeseburgers). Things from the past. The story of getting stuck in the elevator earlier that day with a ton of people and no room to move. I'm that family member that will say anything.
And then had walked back to my dad's room as the man in the next room died. And I heard the family sobbing. And I saw them leave. These people I had been exchanging those "pity looks" with. The pain--I felt it. And I finally lost it. Luckily not in front of my dad. I somehow ended up back in the lobby and everyone looked at me and I said "the guy in the next room *** died." And I sobbed. And my grandpa grabbed me and Jon was somewhere and just held me. And I sobbed, and I pounded his chest with my fist over and over. And I've had a much harder time holding it together since then, perhaps because I haven't slept since Wednesday. By the way, on top of all this, my sister had her baby on Thursday night. Dad was there waiting all day but didn't get to hold him before he had to leave.
And the list of *** goes on, but I've written a *** novel. I know I've said all this out loud to EK, but it feels good to say it again. IDK, the way I process things, I guess.
GHM, what you are feeling is normal and it's okay. I guess that's what I hope you get from our stories. It's okay to be angry, it's okay to be sad, and it's okay to cry.
My dad was in a coma when he died, and everyone was telling me to kiss him goodbye and tell him it was okay to go. I refused to do it. I felt as if I did that, and he took his last breath, that I would be responsible somehow. Looking back, I know that isn't the case, and feel awfully selfish for not telling him it was okay to go, but I wasn't thinking rationally. I was hurting and scared. It was awful.
Lean on your husband, your family, and spend time with your dad. Make as many memories as you can, and know that as awful as it is, time will heal. And don't make apologies for what you feel or how you handle anything. Every person handles things differently, and you will handle it the only way you know how. You will get through this, and someday, it will be easier to smile than cry. I promise you. Email me at tayc413@yahoo.com if you need to talk or any advice/sounding board from someone who knows. I'm so, so sorry.
I'm a lurker, but I couldn't help but respond. I'm in the same boat. My Dad was diagnosed with adenocarcinoma (stomach cancer) in April. He, too, had several large lesions on his liver, and his cancer is incurable. He is also uninsured after losing his job after 20 years, so that's added to our entire family's stress. He just finished his 5th round of chemo, and his last scan showed significant improvement from the chemo. His doctor warned us all that this is still not to be considered a cure - it's still incurable and will come back, but it has bought him some time. Without the chemo he'd have already been gone. He can do one more round of chemo with his current drugs, and will then get a break for a while, until he shows signs that the cancer is coming back, and then we'll try something else to see if he responds to that.
It is all consuming for the family. The first few months, I couldn't sleep, cried at the drop of a hat, and was constantly afraid. As things have progressed, I've calmed down some, but it's still in the front of my mind all the time.
(((Hugs))) The only advice I can give, is enjoy the time you have with him. Our family has gotten so much closer through this - and we were close to begin with.
Twinmama, I'll keep your family in my prayers. I know you hate to worry about money--but still, that worry is there.
Dad's cancer is a type of adenocarcinoma, a rare form that starts in the bile duct of the liver.
Cancer is so awful. So so so awful. There are a few of us here going through this with our parents, and a few who are going through it themselves. Stick around and check in with us sometimes if you can, and as I said--you'll be in my thoughts and prayers.
I'm very thankful for our closeness. I don't always see eye to eye with my dad, but he's a really awesome man--he'd do anything for anyone. We're very tight-knit, but I guess this has made us open our eyes a bit--not take each other for granted. I've hugged my family and told them I love them more in the past few days than ever. And like I said, we're very close. But not always affectionate. I hate that these things are such eye openers.
I know we can look back and obviously we have regrets, but so many more happy times.
Thanks, GHM. Your family will be in my prayers as well.
I remember those first weeks after his diagnosis - they were hell. My poor co-workers were walking on eggshells around me for weeks, hoping I wouldn't fall apart on them if they asked how things were. It does get better, but only as well as knowing that he doesn't have long can be. I love that we all spend more time together, and tell those we love that we love them, but it's also heart wrenching knowing what has made us open our eyes.
Awww GHM I am so so sorry. I haven't been in your situation but have recently lost someone close to me, however it was quick and very unexpected. It has been hard but it is getting better. Cherish this time you have, let your dad know how special he is.
You will be in my thoughts and prayers.
Hey -- I'm so sorry. If you ever want to chat, page me. My mom was recently dx'd with brain cancer and, right after, my bil with stage 4 pancreatic cancer.
One thing I can say is the first two months were a f'ing nightmare. I got the mother of all sinus infections from pure stress and crying and exhaustion and worry. I had no voice. The pain of feeling the pain of those you love (if that makes sense) is the worst part -- I would have done ANYTHING for my mother to feel good again and not worry. My dad cried and cried for a long time after. Basically your world is upside down and honestly -- it won't really go back again. I'm not being a Debbie Downer bc you will feel better at one day in the future like you said (whether near future or far future), but once a parent is ill -- your view just changes.I think it's part of being in our 30's and 40's and it sucks the big one. You will feel it and you MUST feel it -- there's no way around it.
Another thing I can say is hope is KEY --- maybe even hope beyond reason. I went through some serious dark days with my mom. The dark days may not be done yet, but beyond many odds, my mom is doing better after 11 months. Today my bil's scan showed the cancer has not grown and he is on a new drug. I feel like it's my 'job' as a daughter and sister in law to hope and hope and hope some more -- I don't want realities in my face just yet. I will cross that bridge when I come to it.
We all cope differently and your experience will be your own, of course. My best advice is no advice at all: be in the moment both good and bad and find comfort in your friends and family...and also believe in the unbeliveable.
my dear GHM- Im sending you love and strength. this is one of those tricky things that only time will ease the effects of, and even then,it'll never not be hard or painful.
My dad fell ill a few years ago with a mystery illness that they could not dx, and he just got worse and worse, and started becoming incapacitated- they thought it might be some form of MS, but couldn't figure it out- in that time, when we had no idea what was going to happen, it was so dark and horrible.
I am SO SORRY you are dealing with this.
Thanks vccake. Thoughts for your family, as well. Man, this sucks. So many of us going through this.
You're very right about hope--I have to still have hope. My grandpa asked the doctor to give us any little hope that we could hold onto. And he said that dad is young and strong and healthy--and that's good. I have my moments of hope, and moments of despair.
I told Alicia earlier that dad has hope. We need to have it, too.
((hugs)) to everyone.
This. And big *hugs*
Nora Judith 7/2/06 Miles Chauncey 4/20/09 born with Trisomy 21 - Down syndrome
Please feel free to whine as much as you need to. If you don't want to do it here, then my FB is always open as is my email. Whine away.
I am so, so, so sorry girl. I just wanted to offer you my (((HUGS))).
You take my ovaries, I take your yarns.
In terms of physical health, he's doing well. He went in for a recheck a week or so ago, and everything is looking good. They're going to monitoring every six months now.
Now, if I could just get him to leave my mom, he would be doing great. But that's a whole other battle.
You take my ovaries, I take your yarns.
I'm so sorry that you have to go through this.
my dad was ill last fall and we had no idea how bad it was. Dec 21 he told me he had cancer but they were still trying to figure out what kind. Dec 27 he told me he had bone, liver and lung cancer. He was getting ready to start treatment but he declined very rapidly and was admitted to the hospital on Jan 1.
If I had known how sick he was all fall...I have to stop myself...who knows what I would do but I wish I had known so I could cherish that time with him more.
Cancer sucks! Being sick of any kind sucks! I still think about him every single day! Happy memories, what if memories, sad memories...just think about him all the time!
It gets easier but you never forget.
I've been there as well and it's a miserable place. Almost 4 years ago my Dad was dx with a rare form of leukemia. He died 3 weeks later. My DD turned 2 during this and my youngest was 7 mos. We had just moved home to be near my family.
My Dad was a healthy active guy and he got sick so suddenly. They worked him up like crazy and finally figured it was a form of leukemia so he started on chemo. He expected to be in the hospital for about 30 days. The chemo completely wiped him out and he ended up with a couple infections on top of the chemo side effects. I was driving back and forth (1hr each way) with both kids and taking them to the hospital with me. Eventually we just moved into my dads. So that was stressful, not to mention my baby wouldn't take a bottle for anyone so that just added to the stress.
2 weeks after his diagnosis, I got a call in the middle of the night and my Dad was having issues and ended up on a vent. I almost got sick on the phone when they called. While he was in the ICU it was apparent that the chemo wasn't doing anything to the leukemia. I tried to get him to the biggest cancer center in our area but they wouldn't take him on the vent and he had to be able to tolerate more chemo which he was not. In the meantime, when they took off the sedation meds, he was completely coherent. By the end of the third week, the docs basically said he was done. They couldn't get him off the vent, he had pneumonia among other infections, the leukemia was increasing at a rapid rate, my Dad was completely uncomfortable and had tubes, wires and IVs everywhere. They left the choice up to my Dad.
So on Friday, my brother, myself and my husband (who's a doc) went in with his doc from ICU and turned off the sedative meds and allowed my Dad to come to. The doctor explained the whole situation to my Dad, that he was never going to get better and gave him the choice to come off the vent and go on morphine and pass away or to stay on the vent. My Dad after attempting to scribble a note to my husband asking him if he agreed, chose to come off the vent. The single most horrifying thing I've ever experienced was watching my Dad choose to die. He wasn't able to talk as he still had the breathing tube in, but as the doc talked I saw in his eyes as he realized what was going on. Still heartbreaking to this day. We were then left to say goodbye. They hooked up some morphine, turned off the vent, removed the breathing tube and he died 3 hours later.
I was numb for at least 4 mos. I felt the same was as you, wanting to be a little girl and have him tell me that it was ok. But it's not, my Dad the guy who would live forever is gone and it freaking SUCKS!! The world was moving on and all I could think was "doesn't anybody know that my Dad just died????" Also since he and my mom were divorced, I was the executor of his will and had to take care of the funeral, selling his 3 homes and settling his estate despite being the youngest kid. It was WAY too much.
Almost 4 years later it's still unbelieveable some days. Just know you aren't the first to feel this way and you aren't alone on here. You could always email me as well... jenberk at yahoo dot com. (sorry for such a long response!)
Thank you everyone for the encouragement, stories, advice, and support. You guys are the best.
I lost my closest IRL local friends a few months ago in a silly situation with my best friend (remember having to miss her son's birthday party? Yeah....) This has shown me how awesome my family is, though. I knew they were great and always valued them, but man. They're really great. My uncle stayed with my mom at the hospital last night since I couldn't. I really miss being there, but I'm glad she had someone.
I've realized that this process is as much about the people he's leaving behind as it is my dad.
My SIL found a cancer center in Atlanta that specializes in transplants for patients with cholangiacarcinoma. Attempts prior to their method were all failures. My dad had been hesitant to go elsewhere, but after talking to my mom last night and telling her there are places that are more familiar with this rare cancer, they're willing to go to one of the big cancer treatment centers.
In related news, Jon and I will be selling our house to move in with them to take over the bills. The house is small, but being close to them and being able to help them is important to us. We're not financially prepared to buy a bigger house, but we'll make do. Dad may or may not be able to return to work. We have already talked together, and talked to my mom, and knew we'd be selling our house after his death, but I think we're going to go ahead with it. I know finances should be the least of our worries, but they've taken care of me, and helped us so much. This is our chance to do it for them, and our responsibility I feel (I don't say that in a burdened way. We WANT to do it). We're going to take a hit on the house, along with having to repay our first time homebuyers tax credit...but that's life, I guess.
I just wanted to offer {{{Hugs}}}.
All I can say is to not take for granted any of the time you have left. Every opportunity you have to see your loved one - take it. Take every chance you have to spend time with that person. Don't have regrets of 'I should have done this' or 'I shouldn't have done that'. You cannot control the inevitable, but you can control what you do with the time you have left.
I am sorry.
I learned the lesson of not taking opportunity for granted the hard way. Years ago, a very special person in my life was diagnosed with ALS. He was a brilliant man, someone I was very close with my whole life: like a grandfather and a mentor. The disease hit him very hard (he was elderly) and he quickly lost his ability to speak. He would communicate with a petzel and an alphabet board, reciting poetry from memory among other things. Anyway, he lived a couple of hours away but cottaged next to us. After his diagnosis he had a goal of coming up to the cottage again. It took a great deal of effort and planning but he met his goal and managed to come up to the cottage. I remember he came up on a Monday afternoon. I also remember being very tired from work (summer, hot) and deciding to give him the night to settle and then go visit him the next day. He died that night. Brings tears to my eyes even now thinking about it. I really have never forgiven myself for that selfish decision.
Not 6 months later, my best friend was diagnosed with a rare and aggressive form of leukemia. She went in to her GP one day because she had been unable to shake a cold for a couple of weeks and was hospitilized right then and there virtually. She transferred to a large hospital in the city (2 hours away) for treatment. I visited her every single chance I had. I'd drive 4 hours round trip to have a 45 minute chat. On the occasions she was home convalescing I would drop in all of the time. She died 6 months to the day of her diagnosis. It was the hardest time in my life (we were 30 at the time) but I knew I had treated our friendship with respect, given it everything I had. That did give me some peace.
Again, so sorry. The helplessness of knowing a loved one is dying is so hard to bear.
GHM, I am so sorry you are going through this.
My mom was diagnosed with breast cancer in Sept '07. She went through treatments and was done with treatments and surgery by summer '08. She came to visit me in Oct/Nov '08 and we had a really good time but only thing was she was complaining about a sore lower back. Late Nov '08, the doctors said she had pancreatitis (sp) and by Dec or Jan, they found the cancer they thought was gone, had spread to her liver. She passed Feb. '09.
It's been over 2.5 years since she's been gone and I'm not going to lie and say it's been easy or that's it's easier today than this time last year because it's not. Nothing can prepare you for this and everyone responds differently. I was depressed a long long time after my mother's death and I still get very sad thinking about the whole situation. I have to stop myself from questioning God on why did he take my mother, who was the most kind, sweet, and generous person I knew, while others who do terrible things, go on to live long lives. It also hurts me that DS will never remember her (he was 2.5 when she died) because my mom loved him dearly.
You are in my thoughts and prayers.