Need to scream ... but can't

[CancerSux]

Hi everyone. I have posted a little here and there, but let me first and formally introduce myself:
I am Tracy, wife and supporter of Kel (KJBrooks) who has a stage IIIc nonseminoma dx 12/30/10, left I/O 12/31/10, 3xBEP, 1xEP 1-3/11, stopped responding at 4th cycle, salvage therapy started 5/11, apparently not responding to VIP but trying one more cycle anyway currently, while we wait for upcoming consultation with Dr. Einhorn on 6/22/11.

Ok, with all of that, I could really use some advice, words of wisdom, or shared frustrations from other caregivers. I have been keeping a blog (http://cancer-tbrooks0197.blogspot.com/) which helps with venting, at least a bit, but some days I feel like I am drowning ... (sorry, I am normally a very positive person, but today was a bad day).

Also, does anyone have any experience with failed therapy? Not relapses, per se, but loved ones failing to respond while on therapy?

Thank you for taking the time to read this, and for all that you do here on this forum and for your loved ones!

Sincerely,
Tracy

[Kat]

Hey Tracy---
You know what? Scream. I find screaming helps. I would always just scream in the car in the grocery store parking lot by myself. You are entirely entitled to scream.
I don't have any experience with your particular situation, but I'd say you are definitely on the right path by setting up the appointment with Dr. Einhorn. He is exactly who you need to be talking to!
I know there are a lot of gentlemen on here who have been in your husband's shoes who will hopefully pipe in here with their words of experience.
Best wishes,

[Aegletes]

Keeping a blog is an excellent idea: For yourself, so you can get what your feeling out somehow. And for your family, so they know what you're facing without having to decide whether or not to ask. After all, a lot of people sort of disappear, some because they're spooked by the very idea of cancer, but others because they don't know what to do or say. But the main thing is that you're expressing what you're feeling. Like Kat said, scream. Whether it's out loud or on paper (or in this case a computer screen). I really think that's healthier than trying to be stoic and composed 100% of the time.

Alex

[CancerSux]

Kat and Alex:

Thanks for the replies. I feel a bit better today (probably because I actually get to be here in the hospital with him during VIP cycle 2, he slept from 3pm yesterday to 7am this am so no contact after 3 yesterday).

I will try the screaming in the car, Kat - just need to make sure son isn't around ... that may actually help my patience with a 4 year old boy

Thanks!
Tracy

[T1130]

It is an emotional roller coaster. Trust me,we have all felt like screaming at some point. I use to cry on my way to work everyday because it was the only time I was by myself,everyone told me don`t cry in front of him or my daughter. Good luck and scream if you want to.

[julesTO]

Hi Tracy - I'm very sorry to hear about the VIP results. I agree that your appointment with Dr. E will help with establishing a plan and expectations. Meanwhile, I agree with the ideas posed so far: write about your feelings and scream (I was partial to doing it into a pillow when/if home alone). I would also suggest looking into the possibility of speaking with someone via the hospital you're working with. I was able to see a counselor a few times throughout the process and I honestly don't know what I would have done otherwise. It was SO GOOD to talk to a professional who deals with cancer patients and their families every day. For example, some of the thoughts/feelings I had (i.e. the ones on the selfish side) made me feel so guilty I could hardly stand it. Just knowing how common and "normal" these thoughts were made me feel so much better.

Please take care of yourself and keep us posted. Thinking of you.

[CancerSux]

everyone told me don`t cry in front of him or my daughter.

That is some of the hardest part - trying not to lose it in front of him cause that will shake his confidence (I am supposed to be the family expert in this stuff), and not in front of my son ... it is so rare that I am without them both and able to just let it all out. Thanks for sharing your experiences too. It helps to hear from others.

All my best,
Tracy

[CancerSux]

Hi Tracy - I'm very sorry to hear about the VIP results. I agree that your appointment with Dr. E will help with establishing a plan and expectations. Meanwhile, I agree with the ideas posed so far: write about your feelings and scream (I was partial to doing it into a pillow when/if home alone). I would also suggest looking into the possibility of speaking with someone via the hospital you're working with. I was able to see a counselor a few times throughout the process and I honestly don't know what I would have done otherwise. It was SO GOOD to talk to a professional who deals with cancer patients and their families every day. For example, some of the thoughts/feelings I had (i.e. the ones on the selfish side) made me feel so guilty I could hardly stand it. Just knowing how common and "normal" these thoughts were made me feel so much better.

Please take care of yourself and keep us posted. Thinking of you.

Thank you so much for your words. I have read some of your blog too, and find comfort in the familiarity of the feelings. I hadn't thought of the screaming into a pillow (would only freak out the dog right now ... he can handle that).

A few of my friends have suggested support groups and counselors, and it is truly just overwhelming to think of adding that in. We are trying to keep our son's life as normal as possible, keeping up with appts ... all that normal jazz, plus we are moving across the country in a few months and trying to figure out how the heck this is all going to work. Stressed as all heck, and I know I need the support too, just overwhelmed in figuring out where and when to get it. I think I am needing to try something at the cancer center here though - thanks for the gentle push.

Best wishes,
Tracy

[mahalomom]

Hi Tracy,

I too never cried in front of my son or most of my family. I tried to keep it positive for all of them. I would find myself out in the hospital hallway crying my eyes out. Once my parents made me leave the hospital room to get some "me" time. I didn't know where to go and went to Target to meander around. I wound up falling apart and doing the "ugly" cry at Target.

My suggestion would be to try and ask for help...maybe with laundry, dinner, taking your kiddo to dinner so you can have some alone/rest time.

All of us caregivers are here for you.

~Mary Ann

[julesTO]

it is truly just overwhelming to think of adding that in... I know I need the support too, just overwhelmed in figuring out where and when to get it.

Hi Tracy - I know EXACTLY how you feel. It took me awhile to get around to even thinking about taking care of myself, let alone making the time for it. It was easier for me because we don't have kids, so the juggling I did was only Shaun & work-related and I was lucky enough to have a supportive boss. But this is the great thing about the hospital-associated resources - they totally understand the feelings and logistics associated with being a caregiver and may have some suggestions you hadn't considered. And as Mary Ann suggests, rally all your support troops to take specific things off your plate to help you swing it. Glad the blog has helped. Please don't hesitate to send a message if you need anything

[Aegletes]

This is why I often say that, in many respects, co-survivors and caregivers have a heavier (or at least I different sort of heavy) emotional burden to bear in this insane dance that is cancer. As a patient, I had to deal with my own fear, frustration and fury at what I was facing and, while I tried to be stoic about it, knew nobody could really blame me if I express all those feelings. Well, if anyone did, I'd just give them a piece of my mind. But when you're a caregiver, you evidently don't feel you have "permission" to express your fear. What's worse, you're on the outside looking in, trying to be supportive, but often not knowing what to say or do to be supportive. I've never been a caregiver but I am in awe of all of you who have. You're true heroes. I had to be strong for myself. You feel the need to be strong for others as well. That is a heavy burden to carry indeed.

[CancerSux]

From the amazing support and words from you all. My son is too busy watching Scooby Doo to notice

I went through the peripheral caregiving with my mother until we lost her just 11 months before my husband was diagnosed, and thought that was tough - my son and I flew out to be with her and help after each of her chemos. But being the primary caregiver is so much more demanding, and important, at the same time. It gives me a whole extra level of respect for my father than before, and for each of you.

While we have many friends here locally, we have no family. And I think I feel like a burden over and over again to the same friends for help with our son, or dinners, or anything. I laugh now at our naiveté thinking surgery and a few rounds of chemo would all be over in March. Ha! I wish. I know it is stupid, but I almost feel like because this is still going on, and he is becoming refractory and we are looking at months more that I am just the annoying wife that keeps asking for help from friends and never being able to help them back, you know? I don't know, probably rambling here ...

Just to add a face (through a mask) to the name: here we are visiting Kel today:


Thank so much,
Tracy

[Aegletes]

Thank you for posting a photo, Tracy! We all try to get to know each other in person if we can (which is one why we have an annual Forum Family Fix) but, absent that, it's nice to put a (masked) face to a name. As for your friends, I will say this: a lot of people are frustrated at not knowing what to say or do when someone they know is facing cancer. I'd hope that your friends are, if anything, grateful to know how they can help you.

Alex