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Not posting much

Pennymac02's picture
Pennymac02
Posts: 336
Joined: Aug 2010

I haven't been posting much. Most days I find myself lurking, not really feeling like I fit in over at the caregivers board, and not really having much uplifting things to say here. I find myself enjoying the freedom from being a caregiver and then feel guilty about it. My friends are back to saying the whole "You're just so strong" thing, which leads me to believe I'm not really being honest with them about my feelings because I sure as heck don't feel strong.

I'm still having multiple "crying jag" moments for no apparent reason; then for no apparent reason they're gone. I hate cooking and eating for one yet I've continued to gain wait because I'm emotionally eating and I know it. My mother-in-law is significantly depressed and I feel powerless to help because she's so far away in Nebraska.

Has it really only been two months since I lost Mike? My sense of passing time seems skewed, somehow. Like he's been gone for ever sometimes, and at other times seems like he just passed. The normalacy feels, I don't know, uncomfortable somehow? My faith feels non-existant. I continue to pray for others but feel no real connection to God anymore. And I am struck by the entire unfairness of this whole cancer thing. I obsess about that over and over.

I guess that's why I'm not posting too much. Cause apparently I have a need to ramble, too.
Penny

Tina Blondek's picture
Tina Blondek
Posts: 1560
Joined: Nov 2009

Hey Penny
No problem my friend. Give yourself time. At least a year or more. Remember God did not create cancer. Cancer just happens. God did take Mike to his eternal home. Now Mike is at peace. No more pain, suffering or cancer! Cancer is unfair. I feel for your mother in law also. Can you talk to her by phone, or email? Some kind of communication would be helpful. Have you ever tried to journal your thoughts and feelings? It is very helpful. You are not alone here. You know that. We have all lost a loved one in the past year. Lean on us, lean on our Lord. Seek some kind of counseling. Know that we are thinking and praying for you. Please do not stay away for too long! Hugs.
Tina in Va

Beckymarie
Posts: 358
Joined: Aug 2009

Penny
Wow..you expressed everything that I have felt or thought since my husband died 9 months ago. Being a caregiver is so hard, why wouldn't feel a sense of freedom now that it is over. It doesn't mean you miss your husband any less. I often say to friends, "I can't believe Terry has been gone nine months already." Other times I can't believe it is only nine months. Time has no meaning. I rarely sit at my table for meals. When I do eat, it is sitting in front of the TV. I used to have faith in God but that does not exist anymore. There is so much imbalance in the world, so much unfairness. Who gets a miracle and why? And yes life is very unfair. My son is getting married this weekend and his dad will not be there. He will not see his grandchildren. It sucks. Hang in there. Two months is not a long time, I guess 9 months is not either. Time heals all wounds or at least that is what I am told.

jenene
Posts: 40
Joined: Oct 2010

That sounds so much like my life now. My husband passed 3/1/11 and I haven't been back on here much. Just as you I can't really post on caregivers anymore. Not sure what even to say. Trying to get my life back in order with my 4 year old. I can't even get the ashes yet, I will someday soon I hope. I also have my moments where I am just fine and than it just comes crashing down. Seeing all of Kevin's stuff around the house is hard but I can't seem to do anything with it yet. Everyone keeps telling me how strong I am and how totally together I sound. If only they knew how torn up inside I am. My daughter keeps asking me when she can get a real dad. I am not sure how I will ever find another one. I have so many criteria now that it will be hard for him to fulfill them all. Everyone tells me how hard it must be for me. No one really knows what to say. I feel like I can't really relate to anyone. Everyone who has lost someone had lost a mother or father, not a husband. Especially not one who was 38. Now I am the one who is rambling. Thanks for sharing your similar story Penny it is nice to know someone is going through what I am going through. Even though no one ever should.

tanker sgv's picture
tanker sgv
Posts: 128
Joined: Nov 2010

I knew what u said was how I feel but I couldn't put it in words. U and every one else who has posted made me realize its ok to feel like this. Thank you. My mom past in November and I didn't come back to this site until a week ago. I also hate when people say how good I'm doing. What the hell is it supposed to be a complament or a phrase of encouragement, why because I'm still paying my bills or had a happy moment, big deal am I still "strong" when I wake up in middle of the night and realize that my girlfriend left me because I chose to be my moms caregiver over her or the fact that I cry about being 27 with no parents or grand parents because cancer has killed em all. So yea I get what u mean. The only thing I can think is people say that because they don't known how to handle our situations and THEY don't want to talk about it. Anyway great post and don't worry about God or understanding heaven just worry about u and understanding ur own life. Plus if God is real sounds like he's got his hands full with all the loss on this sight so I'm sure he'll let u slide on being all about u right now.

luz del lago's picture
luz del lago
Posts: 452
Joined: Jul 2010

Dear Ones,

Losing our loved ones is so difficult, so painful, so confusing, so enraging! We are all in stages of grieving, all or any of our thoughts and feelings are "normal" to this process. Yet another word I have come to dislike!

This is why we are here. To cry on each others shoulders. To let someone else cry on ours. To ask advice or what others think of a feeling or situation. To share our thoughts and feelings. I know that without even trying, many have answered my questions, simply through their sharing their moments. I hope that I have been there for you all, also.

It is ok. When one of us is feeling down, the rest of us band together. We offer prayers, wishes and hugs. I know several of you that shared that your faith was helping you through the hardest times of your life. It is also ok to wonder or question why. As my therapist said to me, just because you are a believer does not mean that you don't get to be sad, lonely, angry. And that you don't get to scream and sob and ask God why! You are human, and you loved deeply, it will hurt. I will pray for you that once more in your life, you feel His love and grace again, if that is what you wish for...

Sending hugs,

Lucy

DitZy2
Posts: 38
Joined: Dec 2010

I totally understand your feelings, I just feel so sad since my sis died. I have continued to be a caregiver though, 2 weeks after she passed we had to move my father-in-law in with us from out of state. He has severe dementia, new world for me and I don't know if it's easier to deal with than the cancer, slowly he is mentally dying.

Really miss going to my mom's to take of my sis, even though I still need to go help with my mom. Dreading the first family get together. For forty years us 4 sisters have always been together. Really looking forward to days where I find some joy!

Go ahead and ramble if it helps, we don't mind. Please be easy on yourself you've been through a horrible situation and it will take time.

(((Hugs))) Diane

Noellesmom
Posts: 1270
Joined: Aug 2010

Penny,

You may not have recognized them, but you saw others in the very same place you are - your faith feels non-existent, you say. I think what you don't realize is that your faith is carrying you right now. Faith is not always about celebrations or inconsolable grief - most of the time it is about picking one foot up and putting it down in front of the other - it is the day to day existence we all share.

Your faith is what carries you through the ups and downs in very obvious ways (weddings and funerals come to mind) but the moving forward through life with the knowledge that even if it is not always very good or very bad, it is all a part.

Hold on, Penny. I don't know your faith but I know God holds me in His hand always, even when He is remaining quiet and watchful.

Hugs.

Pennymac02's picture
Pennymac02
Posts: 336
Joined: Aug 2010

You made me cry. * sniff* Thanks; it was just what I needed.
Penny

Noellesmom
Posts: 1270
Joined: Aug 2010

Hope it was a good cry, Penny. We all need those from time to time.

Hugs and a happy Friday to you!

Tina Blondek's picture
Tina Blondek
Posts: 1560
Joined: Nov 2009

Very well said Noellesmom! Thank you :)
Tina in Va

3Mana
Posts: 829
Joined: Aug 2010

Penny,
It's still so soon since you lost Mike and your feelings are perfectly normal! Our lives are so different when we lose the ones we loved and depended on. When Tom first died last March I'd buy Lean Cuisines all the time. I'd stand and cry in front of the darn cooler. It didn't seem right to have to be buying for one. I always loved to cook and eating alone sucks!!! It'll be a year next week that Tom died and I miss him so much.
Today is my grandson's 7th birthday and I know I'll cry when I go over there tonight. I have a picture of Tom watching as we sang Happy Birthday last year. That was only 4 days before he died and the memories are going to come back tonite I know it.
I wish I would've saved a message he left on the answering machine cause I just want to hear his voice again. Tears are running down my face again, darn it. So better go. Plus they're playing that song "Up to where you Are" by Josh Groban.
Take care Penny. One day we'll be okay, it's just going to take time. Carole

grandmafay's picture
grandmafay
Posts: 1610
Joined: Aug 2009

There is not much I can add, but it looks like I have been dealing with this grief stuff the longest. It will be 17 months on Sunday since I lost Doug. I think of all the wise and not so wise things people have said to me, and know that words can't really help much. Our feelings are our feelings. Whatever we feel is right for us. I really don't know what normal is, but I can perhaps reassure you that I have shared and continue to share many of the things you all have mentioned here. Those first few months are somewhat of a blur for me. People said I was strong; I wasn't. I was just numb. I did what I had to do. I smiled in public most of the time and just took one step at a time. Some of those steps were back, too. I felt less stress than I had as a caregiver for six years, but that was replaced by an emptiness. Time has helped me. I will always feel that hole in my heart, but now I find it easier to live with. I try to step out of my comfort zone regularly. I have found it easier now to eat out by myself. I don't try to cook very much because cooking for just me isn't fun. I have finally succeeded in losing some weight, but I didn't even try for the first year. I still have many pounds to go. I gained weight every time Doug was in treatment and he was in treatment a lot. Our lives have changed in so many ways. We are in a learning curve. Learning takes time. We all know that, but sometimes we forget. Faith is what is keeping me going, faith in God, faith in my family and friends, faith in me. Hang in there. We are amazing human beings. We loved deeply. We grieve deeply. Even knowing what I know today, even feeling what I do today, I am thankful for that love. Fay

UKLady's picture
UKLady
Posts: 85
Joined: Jan 2011

Penny, I was tempted to say your American phrase the gift that keeps on giving because that is what you April and many do thank goodness! I am a care giver that has been grieving since our honeymoon last August when we returned to the USA to our new life full of hope to last less than two weeks. If you and April and others can manage to post honestly here as youbb do,then those of us only a few steps behind can absorb what you say and apply it to our own situation and know that others like yourself take the breath and post anyway -and we can learn- do you not see you are doing as great a job as when you were in the hospital? It is something you feel inside of and certainly not an obligation, but I am a caregiver my husband moving toward end of life from honeymoon to hospice - that was not in the plan- and if in the next few weeks I can remember a phrase of yours- can you not see it was worth the post :-) I waft between the boards sine they had to make a division somewhere for technical reasons and nothing to do with fluctuating emotions so you will often see your old board friends here. Grieving begins with the initial diagnosis after all.............You have been inspirational - I have three doctors in separate hospitals working as a team because of something you said. - they were writing Steve off on morphine as an easy way out. AS a result there indeed will be a little quality time before hospice - you gave us that quality time through inspiration - don't give up on us!

Lyndsey, caregiver to Steve Stage IV lung cancer - 7 mets to brain and dementia from whole brain radiation- hanging in there because these girls showed me how to fight for right in another country!

mswijiknyc's picture
mswijiknyc
Posts: 421
Joined: Oct 2010

I can understand as sometimes you just don't have the words. Been there a lot myself. But hopefully with the new fur baby in the house, the 3 of you can find the words together. As for being uplifting, don't know about you but when Pat passed my cheerleader went into hiding. Screw it - be you cuz that's what got you through in the first place. I'm a smart arse and that's what gets me through. Personally, the next person who tells me about a bereavement support group is getting b!tch slapped. I really feel the need to feel like crap once a week by sitting and hearing others who presume to know what I'm feeling. Everyone on this board and on this site is my support group - been there from the beginning and know where I am. Sorry tangent but I hope you get where I'm going on this one. Being the wife of a man who left permanently at 30 yrs old is a very strange place, at any age is a strange place. As long as I can keep my sarcasm I'll be ok. When I loose that be afraid.

Lyndsey - I fought for Pat from day one, even when he felt I was fighting against him. Every doctor visit, every hospital stay I was THERE. Not sure if you caught it, but right after Christmas we had a huge snow storm here in NYC. Staten Island got over 30 inches of snow. He was in the hospital having a morphine flip out and I was sent home as I made him more agitated. When they told me that all I could do was stand in the hallway and cry. The next day as everyone was digging out, I kept calling the hospital to see how he was doing, and getting no where. I packed a backpack and walked 2 hours to the hospital from the house and stayed the night to make sure he was in good hands. Was kind of weird, as soon as I got there the PCA told me that it was like Pat was waiting for me. He was up every 20 minutes being crazy, but within 3 hours of me being right there with him he fell asleep, and he hadn't slept (really slept) in over 24 hours. He would never admit it to me, but he needed me and wanted me with him.

These docs just don't seem to understand - it's not the patient you gotta watch out for. It's the spouses and caregivers that will climb up there and kick a$$ and take names! We know what's wrong and what's normal, these docs don't. I did everything I could and I have no regrets. And if you need a little Staten Island Irish on your side let me know. I'm dangerous cuz I know just as much as the docs do hee hee hee hee hee :) Keep your head up and stand your ground. I made sure Pat went the way he wanted, that was the best for both of us. Do what's right for you and your hubby. No regrets.

Pennymac02's picture
Pennymac02
Posts: 336
Joined: Aug 2010

April,
In talking to my sponsor the other day I had a revelation. I'm overwhelmed with the feelings of "Its not fair" on a daily basis. But what I think is more accurate, is that I'm feeling like its more unfair to ME. Mike had a very Zen peace about whether he would get a transplant or not. I was the proactive caregiver who kicked butt and took names, harassed doctors, meddled in hospital services, made sure I was up to date on latest treatments and used my cattle prod on Mike frequently.

Maybe I'm cranky cause what I wanted didn't happen. Maybe I'm offended that despite the multiple hoop jumping, the happy conclusion was not available for us. That no matter how hard I worked, how much I tried, Mike died anyway. And was peaceful about it, too. I'm left here holding the bag of discontent and am not sure what to do with it.
Penny

mswijiknyc's picture
mswijiknyc
Posts: 421
Joined: Oct 2010

Penny,

In the grand scheme of things, you sound similar to Pat. If he wanted something he would put up a fuss til he got it. And if he didn't, o dear God did I hear about it. The woulda coulda shouldas will get you, and it's soooooo hard to let go when it feels like giving it your all just wasn't enough. All i can tell you is you did everything you could. Looking back, would you have done anything different if the course would have been exactly the same? I bet the answer is no. The answer for me is no, and I have said it repeatedly I have no regrets.

Find the place where it's safe for you to let it go. You'll figure it out. I gots faith in ya :)

Loves,
April

UKLady's picture
UKLady
Posts: 85
Joined: Jan 2011

thanks for your reply April- it's much appreciated. I too fought from day 1 for Steve- problem was I was confined by my polite Britness back then in August- now I just plain fight down and dirty.......Delay in responding as I got what I wanted finally- three doctors three hospitals, working as a team. Steve is having three weeks daily radiation to the main tumour site instead of upping huge amounts of morphine with its hallucinations and its cheap and easy option for them.Almost done but just getting him to the hospital every day..........well you've been there girl!

Good news is pain gone from a 9 to a 4- bad news is- he seems beyond wanting to fight now yet not ready for hospice at home, possibly because of the bad myths out there.Even the mention of a hospital bed for comfort and save him pain on sitting up was met with negativity.He is fighting me now, just like your own experiences if I recall. I am seriously considering buying either a white coat or at the very least scrubs today ;-) They seem to come with less hassle :-)

Best wishes and kindest thoughts to you

Lyndsey

debbieg5's picture
debbieg5
Posts: 168
Joined: Nov 2010

Hey Penny,
thought I hadn't seen (heard) you much lately. I too have not been on as much recently. I find myself in an "avoidance" pattern. To come on the board would make me have to think about Ken being gone and I just haven't wanted to do that. The passing of time does seem strange. You look at the calendar and think...wow, has it been 2 months?..seems like it just happened. but then some days it seems like he's been gone forever.
Sometimes I think having kids still around the house is a mixed blessing. It's definitely hard to be thrown into this "single-parenting" world all at once. On the other hand, it forces me to not let myself go down the tubes 'cause I know I have to be there for them. It also keeps me extremely busy. I have not had to deal with the quietness issue in the house like you have. Actually, I would love to have some of those days. I would love to have the luxury of a good crying jag whenever it hit me. But I have to try to keep that in check for the boys' sake. The last time I did that I was down in the basement storage area and I thought I was safe. Apparently, I was too loud with my crying because they came down to see what was wrong.
I also get the "you're so strong" or "I can't believe how well you're handling this" lines. Just take it as a complement. Most people say that because until you go through this, you can not possilby imagine what it is like and you think you wouldn't be able to handle it. But we ARE all handling it. Even though we think we are "basket cases" because we know what it going on in our hearts and minds, to others we appear to be doing well. The fact that we are carrying on day by day and continue to interact with others says that we are making it. If we never left our homes, never talked to anybody and started drinking ourselves into oblivion, that would be "not handling it". So let's all pat each other on the back and keep on keeping on!
Take care,
Debbie

3Mana
Posts: 829
Joined: Aug 2010

Debbie,
I give you so much credit for trying to not cry in front of the kids. I have grandkids, but did have a hard time not crying when they were here. They would always say (I miss Papa) and that would set me off.
It's going to be a year ago this friday since I lost time. I will never forget that horrible night, when I had to call my 3 kids to tell them what was happening. They all live close to us, but by the time they got to our house, it was too late. Everything happened so fast the even Tom & I didn't get to say goodbye.
This morning at the coffee shop where I go every day, someone mentioned remembering how Tom was always so happy when he came there. Well, tears started coming again!!! I'm hoping once friday is over, that I'll be okay again. About everyone saying "you're so strong", little do they know how I am when I'm alone with my thoughts & memories.
All we have now is memories and we will make it Debbie!!! You have your kids to live for and I have my 3 & their families. Take care! Carole

grandmafay's picture
grandmafay
Posts: 1610
Joined: Aug 2009

I have learned to accept the tears. I found that the anticipation of the one year date was worse than the day itself. Everything wasn't ok after that year date, though. Our husbands are still gone. I miss mine everyday. I don't expect that to change any time soon. That hole in our hearts is still there. We learn to live with it, to accept our loss and move forward. Time helps. I have learned not to set any artificial timelines for myself, however. Society try to do that. Some think we should be "over it" after a year. Maybe that works for some. It doesn't for me. I'll grieve in my own time. Take care, Fay

debbieg5's picture
debbieg5
Posts: 168
Joined: Nov 2010

Don't get me wrong Carole....they do come out some times. I just try to not have it be the norm. Actually, they came out last night right in the middle of me trying to cook dinner. My daughter got a tatoo yesterday in remembrance of her dad. My 12 year old son started asking about it while I was cooking dinner and wanted to know how old he had to be to get one and he told me what he wanted. At the same time I was having flashes of my husband standing in the kitchen cooking....he was always cooking for us. The memories overcame me and the tears started coming down. As usual, my youngest came over to hug and hold me and tell me it would be OK. don't know what I would do without that little one.

I'll be thinking of you tomorrow Carole. don't try to fight the day...just let it happen and get over with.
Debbie

lilli1020
Posts: 114
Joined: Jul 2010

You need those releases when you cry and cant stop yourself....don't even try....they are useful in your grieving and believe it or not, they will begin to make you feel better as time passes. I welcome them now because I always feel better afterward!

Bless you, Gayle

skipper85's picture
skipper85
Posts: 231
Joined: Sep 2010

I'm right there with you Penny. I haven't postd much lately either. Between losing my sister and Paul within weeks of each other I guess I just needed to get away from cancer for awhile.

I heard the "Oh I can't believe how strong you are" before, during and after Paul's passing. I don't think people realized that I was just going through the motions for Paul and also to keep my sanity while my heart was being ripped out. I'm still having a hard time concentrating on business - something I have to do to support myself. I'm on Prozac but I don't want a stronger dose because I do have to function somewhat. Even my dog Jessie is on Prozac. We both have the same dose so we share when one of us gets short on pills :)

I can't seem to really cry. I have some tears and feelings of overwhelming agony but I just want to bawl and I can't (not yet anyway). Penny, we both lost our husbands around the same time so I know what you mean about sometimes it seems it was long ago and other times it seems like it was yesterday. Going through the grief process is tough but we are all survivors here and we will get through it. We just don't know how long it will take to level off. Of course nothing will be the same but we will just have to accept a different "normal."

April - I feel the same way about bereavement groups. I don't need to go over things every week with a lot of emotionally distraught people who haven't been there with me and supported me the whole time the way the people on this board have. I would wind up being Ann Landers for everyone and I don't want to go there. What I really would like is just to get away and not think about work or anything. I want my mind to be blank for awhile (more than usual anyway :)

I'm going to try and visit this board more often. I don't want to desert my friends here. You all have been wonderful and I'm blessed to have you as friends.

((BIG HUGS)) to all of you great people.

Skipper

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