Super frustrated! Am I the only one?

The frustration and anxiety are here. You can see it in posts but you have to look a bit closely as a lot of the people here are articulate and have the ability to be quite objective which means suppressing emotions and feelings. Maybe you can see it in my posts, maybe not. I could certainly see it in Jim's posts under the covers but some of the real difficulties have to be fished out. I've used words like brutal, awful, etc. to describe adjuvant chemo. I've felt anxious, despondant, etc. about the past five days. But I think that most of us like to try to keep things together.

A friend on another board died recently - a well-known, helpful, fighter. She had conquered cancer after having it for a long time and was only 41. She dies a few weeks after liver surgery, of all things, a blood clot. So that's been a real downer this weekend.

I'm in the office right now where it's 58 degrees and I have gloves on to deal with the tingling. I have a lot of things to get done this weekend and the nausea and tiredness are just starting to abate but my feelings are that this is no way to live. People I talk to think that I should be doing great because the cancer is gone and it's odd that I have to explain that the pain is worst trying to prevent its recurrence. I know that others are having a tough time too - they might not use the adjectives that make it sound rough but I can feel the undertone of the writing.

I know the frustration of the scheduling of services. I made mistakes in scheduling as well but I didn't know how the systems worked and it cost me some time.

I have thought about dying and we talked about wills, with some good comments by Jim, recently. I'm stage 3b and I should be in good shape but I'm in more pain right now than ever before and trying to hold it together while working and doing the other stuff that comes with responsibilities. I think that forums are a good place to vent and it's something that we need to do from time to time. But we're all trying to be helpful too and sometimes we're away from ourselves to be as helpful as we can and that may seem clinical.

I swear if I was very open enough, my posts will be filled with expletives to describe how this has affected me.  But part of the reason why I usually don't shout to the world how I feel is because I don't want to discourage those who were newly diagnosed or are still undergoing treatment.  But believe me, I would just usually cry silently or scream silently.  Just yesterday while I was taking a shower the devil kicked in and whispered about death.  I was too weak to continue and I just sat there pondering on how is my life gonna be in the coming months or years.  There's a suspicious lung nodule found on my recent scan, the good news is it is shrinking.  The bad news is I have to get back to chemo and pay for it in cold cash.  And I'm not even considering surgery. My kids are still toddlers so thinking about making a will for them is really devastating to me.  

I don't want to look or appear weak.  I know that no matter how our loved ones tell us how they understand our situation, I think all of us here who have the cancer really are the ones who understand how we feel.  And its alright to vent your frustrations here.  we totally understand it.  We get it, you don't have to feel sorry.  If taking the meds help you, then I say go with it.  Our situation is not easy, hell it is HELL and we need major help to sustain our sanity, whether it be meds or emotional support from peers and family.  Its not easy dealing with the physical toll as it is, and the mental and emotional stress just worsens it.  I sometimes wish I was just dreaming and this isn't happening. 

We feel your pain. 

if you can get your hands on some cannabis, specifically indica which encourages sleep do it.  It’s been a blessing to me.  I couldn’t sleep after surgery and all this chemo until I got the weed. 

I'm always in a struggle with worry.  It seems I've always got one test or appointment looming on the horizon and I'm always nervous and afraid.  Last year two biopsies unrelated to colorectal cancer, a biopsy that turned into 11 doctors appointments later, one test after another.  So it might seem like we are here just going on with our life, but a lot of us have the anxiety and worry as well.  Some people the worry just rolls off their shoulders - not with me.  It shows on my face and mood.  I'm a worrier by nature.  I've been cancer free for 9 years and I'm still anxious.  Let your doctor know your concerns and ask if there is something you can take for the bathroom issues so you can get your CT scan done.  I'm also not sleeping well.  Mine is because I'm going to the bathroom all night long.  After reversal of the ileostomy, my bowels are so loose I'm going at least 8-15 or more times a day.  Haven't slept well in 9 years and it does wear you down.  Wishing you well and come here often to vent your concerns.  We are always here to help you.

Kim

You're not alone. When I'm down I just don't come on here. I take sleeping pills to sleep, anti-depressants to keep from having negative thoughts, and I'm hurting, fatigued and miserable to some extent most days. From having an ostomy and having issues with what I eat due to adhesions that have surrounded my organs, to a huge ball of a scar from having a drainage tube after my surgery that hurts when I sit because it's near my tailbone and having the drainage of mucous from my rectum because the colon still produces it but it hurts like I'm constipated and I have to wear a pad every day, to just wanting to eat some popcorn or raw veggies or anything I can't have now, a good day for me is still a bad day.

So yeah, I totally get the fear and frustration and anxiety. And we all have it. Maybe not all the time but nobody gets through this without it. I see my oncologist in two days for the first time since I had to stop chemo in September and she'll probably want me back on it. So back to more fatigue and the ugly rash that makes me embarassed to go out in public. But at least it works. This time I'll probably be on antibiotics the whole time because last time I ended up in septic shock while on it due to my colon getting irritated and allowing bacteria into my bloodstream. So I'll be really scared of that happening again.

Just know you're not alone. I hope that helps.

Hugs,

Jan 

OzarkGal said:

I can relate

I can relate to your situation.  I too have liver mets.  In the month after I was diagnosed, I did the estate planning, etc.  Because I was doing that, my friends asked me if I was giving up.  I told them 'no'.  It gives me some comfort to know that it has been taken care of.  When my friends and co-workers were taking their summer vacations, I was meeting with a funeral director.  I cried through most of it but it was very helpful to talk to him.  If and when, I don't want to be one of those where hospice is never called and I die in an ICU.  Nor do I want to be undergoing treatments that are not working and provide no benefit.  My onocologist is a very kind and compassionate doctor but I am not sure that he will be able to say when to stop treatment.  So I, like many with this disease, deal with alot of unknowns which fuels an emotional rollercoaster. I have moments when I just cry. 

My oncologist suggested last summer that I sort those things out. She said not because she thinks I'm going to be gone anytime soon but because when you're dealing with a chronic condition you have enough to worry about without something like that as well. She said it could just be a good thing to get behind me. So good for you!

Jan 

Anyone whose read my posts for a while, knows I should be paid for promoting Xanax. It really cut the moments of climbing anxiety, helped with sleep, and let me focus. Didn't take it every day, thoujgh that's what the label says, because I knew playing around with it[child of the 70's, my excuse], that it's power diminished with regular use. The wife had Ativan, but I thought it less potent, even with greater dose. It mostly helped her, but at the hardest moments she had my pill. It's likely different for each individual, but when I was emotional beyond doing exercise or work, it was nice to have a go to, and though I'm a bootstraps guy, I have no aversion to taking a thing I know helps. I'd probably pitch meditation or mindfulness to you, if I was better trained with those techniques. In any case, rest assured most of us know, and have felt the levels of fear and anxiety you bear, we just have time to collect ourselves and project the calmer, stronger people we want to be, mostly[though if you look back, I've got posts that are pure anguish]. I once said the nice thing about talking through a keyboard is that you can cry and still keep typing. Hang in there.........................................................Dave

for any of us.   I’m with everyone else here that’s posted comments, I have had my really bad days (even still).  the only people who can really understand are the people who have been through ( and are going through) this disease.   I found that Ativan , Xanax , meditaction, mindfulness, cancer support groups, walks in the fresh air outside all have helped.  I do my best to keep positive. 

Wishing you all the best

pam