Very down and really need...something

[Julie YW]

For quite awhile now, ever since I posted my last blog post about my sense of loneliness and solitude -- I think some of you read it -- I haven't reached out to anyone to talk about what's going on. I've not even been able to find solace in my writing, which has always been my greatest comfort. Ive convinced myself that nothing anyone can say can comfort me. I'm filled with so much jealousy, bitterness and hate, I don't know what to do to let those feelings go. For months I thought I had found peace but then the most recent scan results came and my brief period of stability is over. I don't feel like my husband can understand, nor my friends. The only people who can understand are those who are in my exact position but no such person exists.

But tonight, I logged in here after a long absence, looking for some relief. Desperate I suppose. The erbitux I've been on now for a month is causing my mouth such discomfort. It's miserable. The rash I can manage so I won't even complain about that. I'm also convinced erbitux has caused this persistent floater in my left eye which makes me want to rip my left eye out. If you know my history of vision issues (blindness at birth, blah, blah, blah), then maybe you'd understand how this would aggravate me and creates anxiety about whether erbitux might cause blindness or something. Anyhow, tonight I lost my shit with my 4 year old daughter who refused to go to bed. I know it was a reaction to all this cancer crap. My husband told me I had crossed the line. I ended up sobbing hysterically for an hour. I don't want to live like this. I don't want my children to remember me as a bitch in pain and unhappy. I have my next treatment tomorrow and I told my husband I want to stop. I would rather die sooner than live like this. I'd rather feel good and be happy and be a good mother. I know I don't have the courage to actually follow through with that statement but in time I will.

[cathy123]

Just want to say so sorry. We all lose our temper with the kids sometimes for much less reason than the stress you are dealing with. I hope you have some better days ahead.

[Rob in PA]

Sounds like you need to read the .."spoons" post about allotting time to friends Abe family. Very interesting take.
good luck.!
Rob

[ANDRETEXAS]

You are having a tough time. I understand your frustration about your actions, words and thoughts. We have all been where you are on one level or another. But your strength, courage, resilience and patience will come back. This does not make you a bad mother, wife, friend or person. I've realized that this is a lonely one-person battle, hopefully with the full support of family and friends. Your daughter will forgive you. I pray for your serenity and ability to move forward and continue the fight you pursue. I know you will find the guidance inside yourself.....Andre

[PainInTheAss]

I'm so sorry you're going through this. None of us are in the exact same position of anyone else, really, if you think about it.

I remember reading that there is a point in this journey where's it's almost like your loved ones stop walking with you and you start to walk by yourself. None of them can possibly know what you're going through. And that period feels very lonely. The frustration of the physical discomforts and changes easily bring the deeper emotions to the surface. You look a little crazy to people around you losing it over things that aren't that big of a deal to them. But that's not what's making you lose it. It's the bigger things. Things you try to shove down just to get through each day. Even stubbing your toe is enough to "break the seal" of those emotions and thoughts and they get loose like a box of bees. Sometimes you do need a good cry and just let it all out. Just be reassured that this is all normal and human and there's nothing "wrong" with you. You are in a war zone all by yourself and war isn't pretty.

There were a lot of things that happened with my mom and her mental illness that I see differently now than I did as a child. When I was 12, she told me she had been talking to her psychiatrist about killing me. I was actually terrified of her at the time. Now I understand that that wasn't really "her" and she was dealing with depression, guilt and medications. I'm sure your daughter will look back on this time as an adult and understand what you're gojng through.

You should tell her how much you wish you could the best mom ever because you love her so much. Let her see your tears when you say it. She will remember that the rest of her life.

[Nik Colon]

I am so sorry, I understand the feeling of thinking you are a bad parent and getting upset then feeling guilty, etc. I hope you can get some sort of comfort soon.

[KWT]

Julie, as usual you're preaching to the choir with me. We share very similar thoughts. I hope you can find a way through this round of shit news, I'm sure you will. I haven't done chemo or had a Cea test in a couple months, and have a hard time seeing myself back in the chair. How good is a life living with cancer anyway? That's my thought.

[Val*pal]

Julie, as another poster said, all of us moms have "crossed the line" a few times when dealing with our children. And that's without a cancer diagnosis. Dads don't help when they sort of sit in judgment since they are rarely the ones with the kids 24/7. If I'd had a nanny perhaps I wouldn't have had the 2-3 blow-ups I can recall .

Have you considered getting some antidepressant meds from a doctor? I won't even presume I know the stress you are experiencing, but it must be horrendous.

You're a great mom, and your girls will always love you. This is not just empty bull shit. They will.

[Lydia666]

Julie, I honestly think most of us on here felt complete desperation at least some of the time even if maybe we weren't in a similar situation as yours. Whether it is reasonable or not, a cancer diagnosis of any stage can bring desperation and we become so aware of our finite life.

I hope your onc finds a clinical trial that works for you. As long as we are alive, there is hope. Is erbitux working some?

[rwightman]

Julie, my heart goes out to you that are feeling so down. Just last night my youngest said "when are you going to be in a better mood?", which was in relation to me not feeling great and she was asking 1,001 questions. It broke my heart, but I guess at the end of the day I thought, there have been a thousand times that the kids have thrown fits, or been in bad moods so sometimes we have to realize that the same applies to us! Wishing you the best.

In relation when to stop chemo or treatments - I have always believed that is such a personal choice and you will know when you know. There will come a day when you say "enough is enough" and that is OK.

[MrPleistocene]

I just wanted to write about the 'kids' bit. It is slightly off topic. I live in a pretty odd situation as far as generations and families. It has been great in helping me deal with medical issues and such. On the flip side, my wife's sister's family, whom we have shared a home with for almost 15 years has given me a front row seat, but also a spectator's position with regards to their family and struggles.

Sure, the kids remember certain punctuations, but they are smart. These small, singular events are part of a larger context. Kids are good at figuring that out. Even a four year old knows you are suffering. They might have some fear, mostly out of misunderstanding. No matter what happens in the long run, they will one day walk out into the world as their own person. The people that raised them won't be seen as monolithic and single fissures won't be the defining element they bring. I can't give you the sunshine/lollypop idea that cancer somehow 'does good'. I don't believe my son will be in a better place than if I'd been able to live an average life.

One of the mantras we have adopted is,"Just do your best. It's the only way to keep that last bit of sanity. Maybe I don't have to be good, but I can try and be a little bit better than I've been so far."

The key phrase in my mind is the 'last bit of sanity' part combined with the idea that doing your best the ONLY way. When it just doesn't make sense and futility seems like the answer to every pop quiz, just do your best...

[ktwmn]

Julie,

I totally get what you're talking about, because as always you have so precisely delineated the complex emotions associated with this dx. Before my recurrence I posted to the board in a similar vein and found the responses really helpful, much more than the "support" of friends or family, because everyone is here or has been here and understands.

Sometimes it's harder when you have a family, because although they surround you on a daily basis it is you who must undertake the journey while others remain on the sidelines, cheering you on albeit inhabiting a world we have lost. I wish I had an answer. Hell, I wish I had just one answer to any of the unanswerables. I tend to seesaw from complete despair to moments where I can see a faint glimmer of promise, but mostly somewhere in between, knowing that the person who once inhabited the world of my loved ones can never return.

With your strength of determination, intellect and good sense I am sure you will once again find a path to negotiate the days ahead with aplomb. We're with you on the path, maybe on separate paths, but facing the same mountain.

[lpas]

I'm so sorry you're going through this. While you and I aren't in the same place right now, I'll admit that I've also had a tough time with the emotional aspects of a cancer diagnosis. I've seen so many posts here that talk about the importance of being positive (i.e. reducing stress so your immune system can function at its best) living life one day at a time and making the most of the present. I wish I could find a way to be better at those tasks. In truth, I really suck at them. Instead, I worry and ruminate and over-analyze. And it never seems to fail that the kids will be on their worst behavior just when I'm feeling at my lowest and least able to cope.

With all that said, I agree with Val's suggestion about trying an anti-depressant. I think it could really help. I haven't yet but I know if my cancer comes back it's very likely that I'll need it to continue functioning on a daily basis. I'm just not a happy-go-lucky, smile-in-the-face-of-adversity kind of gal, and I never will be.

Take care and please go easy on yourself.

[orcasres]

Julie,

I did not have cancer when my children were young (they are 28 and 32 now), but my husband and I both had stressful Silicon Valley jobs (a good reference would be the NYT article on Amazon) and when our older, very sensitive son was in the 8th grade my husband was diagnosed with Type II diabetes which was probably simmering for a long time. He lost his temper easily and would get angry with the kids for no apparent reason to me. Once we found the cause, my older son told me many years later that he immediately researched the disease and he was never bothered by his Dad's temper again. If you love your kids, they do know, they really know it. Sometimes they know other kids who don't have loving parents and they can see the difference even at a young age, even if you lose your temper. I cannot come close to imagining what you are going through right now, but your kids will understand and will love you.

Lois

[Rob in PA]

Julie,

I did not have cancer when my children were young (they are 28 and 32 now), but my husband and I both had stressful Silicon Valley jobs (a good reference would be the NYT article on Amazon) and when our older, very sensitive son was in the 8th grade my husband was diagnosed with Type II diabetes which was probably simmering for a long time. He lost his temper easily and would get angry with the kids for no apparent reason to me. Once we found the cause, my older son told me many years later that he immediately researched the disease and he was never bothered by his Dad's temper again. If you love your kids, they do know, they really know it. Sometimes they know other kids who don't have loving parents and they can see the difference even at a young age, even if you lose your temper. I cannot come close to imagining what you are going through right now, but your kids will understand and will love you.

Lois

Well said Lois.