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Stalking the board

MandiePandie's picture
MandiePandie
Posts: 76
Joined: Dec 2020

So I have developed this habit of sort of randomly clicking back through this board and reading the posts, then I will go and click on the user to view their profile.  From this behavior I have became super distressed by seeing all of the people who either disappear, or end up on a "people we lost" post when I search their username. 

Anyone else done the same? Is it likely that people just move on, or do you think that most people just pass away?

I dont know what good the answer would do me anyway. I guess I am just looking for peace of mind. 

Should I stop doing it? I feel like in some way, its my duty to know the good the bad and the ugly, to be prepared for my family (especially sweet dad who genuinely believes there is a good chance that he will just have surgery and be done with this forever, so much so that he even planned a trip in March Cry). I also spend hours just crying over these people and then of course crying over my dad. To be fair though I also found out I am expecting (shhhh, dont tell anyone, only husband and you guys know now), so maybe I am just feeling extra crazy because of hormones. 

Tell me what you think, or tell me anything else. I appreciate the interactions on here and love to here from ya'll! 

Trubrit's picture
Trubrit
Posts: 5424
Joined: Jan 2013

Cancer kills. We are all aware of that, and thus, we have lost many fourm members to death.

 My goodness, when I first started on the forum back in 2013, there were allot more active members, and we were losing members to death on a weekly basis. It was very distressing, because you really get attached and feel like you have become friends. There are many members who have left the forum for the very reason that they could not handle so many people passing. 

BUT, we have also had many members who achive the wonderful status of NED (No Evidense of Disease) and want nothign more than to leave it all behind, and that includes the forum.  Some pop back on occasion, others let us know they are moving on. 

Then we have the lost ones. Those who post and then disappear. We are left wondering if they have passed, or have just moved on. 

Some of us on the forum have done some pretty extensive searching for members - but with limited information, like those who use handles (like Trubrit), it is impossible. 

I have had some wonderful help from forum moderators in the past - although my latest attempt at finding Joan M, I was told they could not help me. 

I think you should do exactly what makes YOU feel good but do not obsess over it.  You will know the line that goes over to obsession. 

While I cannot speak for any members and just myself, I think that each of us has to handle the forum in a way that suits our own emotional needs.  For me, I will always face things head on. I KNOW that Cancer will claim members of the forum, which one day may include myself. I KNOW that there are members who WILL beat it, which at this time, IS myself. I accept both. 

I don't beleive in burying my head in the sand, but if that works for someone else, then my opinion is not important. 

I am happy to hear that your dad believes thre is a good chance. There is nothing wrong with that, for him.  I don't doubt that he lays in bed and has darker thoughts, we all do.   I say join him in his belief, and limit the darker thoughts to those few hours before sleep. Just saying....

Tru

 

MandiePandie's picture
MandiePandie
Posts: 76
Joined: Dec 2020

I always hated the idea of burying my head in the sand... but these days I have been wishing I was one of the people who could. It just all hurts so much. The dark thoughts arent limited for me. Or I guess I should say I can't limit them. I feel like I'm in a living nightmare... it's almost starting to get funny, almost. 

beaumontdave's picture
beaumontdave
Posts: 1135
Joined: Aug 2013

Hi MandieP, I think your going to do what most of us do, as you said, look at everything you can, know as much as you can know, and scare yourself a lot along the way. That was my start, looking for answers I wasn't sure I wanted to read, but being compelled to, none the less. In time, my diagnosis and future stopped being an immediate thing, and stretched out into a marathon, a different path that took years and years, with a lot of scary moments and early longing for my former life. Any peace of mind only came, in the beginning by exhausting my self, walking, thinking, working until I was tired enough not to give damn, taking the Xanax they offered, for a while. I started reading philosophy, things like ''Man's Search For Meaning'' and Tuesdays With Morrie'', then older stuff like Stoicism and Mindfulness. By the time I was coping with my wife's diagnosis as well, I'd learned to stay in the moment, block out the anxiety a lot, because I couldn't sleep much or meet every morning looking down that path we were on. We did the appointments, the treatments, the tests, then found a nice restaurant, took a long drive, went shopping [she loved that] or just got to work. [It was very handy to be a family business, for the flexibility]. Coping methods come to most of us, you're just doing what a lot of us first did, but I'd start planning for the mindset that will carry you through this hard path, and if it goes as your dad hopes, as we all hope, then you'll have just strengthened your mental state, which Life will demand of all of us, at some point anyway, sometimes many points. Losing people here hurts like hell, not knowing their outcome is frustrating as well, but hearing those that beat it back, or beat the odds, or fight it to a standstill and get back to living, those are inspiring people to know. Survivors whose trials I know, and newbies who need to hear hopeful words, or good info., are what I'm here for, and to remember that, though it took a long time, I caught a break and am grateful to share my story and watch the sun come up, still, and for however long it may last.................................................Dave    PS: Congrats about the baby, what's more life-affirming and amazing then that?

MandiePandie's picture
MandiePandie
Posts: 76
Joined: Dec 2020

I thought my coping method was to know all I can, to plan, to expect the outcomes, but if coping methods are suppose to bring peace, mine is only bringing pain. I want to read some philosophy that could help me, but I'm not even reading all of the things I should to help my dad. There is so many websites and so much research people suggestEd and I just keep bouncing from one thing to another and feel exhausted and overwhelmed by so much I don't understand and what is the right way to help him and what works and doesn't and so much else...  

thank you for saying congratulations, in all of this cancer garbage I find myself frequenting forgetting my condition, so much so that as I'm re reading your post to reply, I was surprised by your P.S for a moment and got to remember, oh yeah, I'm pregnant. 

SnapDragon2's picture
SnapDragon2
Posts: 516
Joined: Nov 2019

Its all part of it.  You don't want to know but you have to know.

Even though my surgery was curative intent and clear margins, I knew I wasn't in the clear just by reading about reccurrance and spread.  I didn't know how to read my bloodwork to make sure mop up chemo was doing its job and onc would never answer my question about it so by the time I figured out it was only poisoning me I knew I had to dig deeper for answers to keep me stable.  Thankfully members here and on another site have been very informative.  So, bottom line, stalk this site and take notes on things that pertain to your dad and dig into it.  

MandiePandie's picture
MandiePandie
Posts: 76
Joined: Dec 2020

I can't keep track of all the things that I feel pertain to my dad. I have a hundred tabs open on my phone with info that I half read before searching about something within the info led me into a rabbit hole. 

I admire you and everyone else who is going through this themselves and able to be so smart and even now help someone out like me. I can't express enough how grateful I am. 

Annabelle41415's picture
Annabelle41415
Posts: 6694
Joined: Feb 2009

It's not uncommon to be curious, especially when you are so new to this disease (your dad).  You just want to find out everyone's story, and hoping for the best in every outcome.  Unfortunately, there sometimes isn't a happy outcome for everyone.  Cancer is a devastating disease, and one that can have different scenarios.  There are a lot of people that just want to move on from the board.  There is one FB friend of mine that just doesn't want to think about it anymore, so just quit posting.  I'm one of those people that has stuck around for 12 years because when first diagnosed, my one promise to God was that I'd try to help as many people as possible, and however possible.  This has compelled me to stay on this board as long as I've been here.  Don't be afraid to look at people's "About Me" page, but expect that sometimes it might not always be the outcome you wished for.

Kim

MandiePandie's picture
MandiePandie
Posts: 76
Joined: Dec 2020

And kept your promise you have. I hope you continue to have the strength to be here because it's invaluable to someone like me. I thought I was so strong before this but I'm not strong at all. I'm constantly seeking anything to prop me up, to give me hope, and that seems to come so rarely. Instead I'm in a deep pit of despair. I wish my father survivea like you have, and I wish for even an ounce of the bravery you have. I've prayed for it all but don't think anyone's listening to that. 

anyway, do you know what I means when you click on someone's about me and it says something akin to "access denied"? 

 

beaumontdave's picture
beaumontdave
Posts: 1135
Joined: Aug 2013

''Access denied'' likely means they've passed and family has closed it up, or some such.......................................Dave

Annabelle41415's picture
Annabelle41415
Posts: 6694
Joined: Feb 2009

Yes, most likely the family has blocked the page or requested that ACS do so.  Some of the information from past members is so helpful to others, so I'm glad that most family members still leave their loved one's pages still available.

Kim

worriedson714's picture
worriedson714
Posts: 253
Joined: Dec 2019

I think everyone is right and giving great advice and I to have " stalked the board " ever since I found it . Looking for any good news of those in situations like my dad is in . However after two years of doing that and looking for information constantly and being focused on how to beat cancer all the time . I now seem to be " burning out " I guess is what I would call it . I am just mentally exhausted and worried pretty much 24/7 about my dad and anything going on with him . 

The good news we recently got that my dad's cancer has not spread seems to have helped some but my dad didn't seem to take it as good news . Which put me right back into the mode of worrying about what my dad is thinking and I am starting to realize during this two years I have almost forgotten how to be happy and enjoy life . Maybe I have been to far into the cancer world for to much time I don't think I have stopped to just enjoy the fact my dad is still here in the moment cause I been to focused on fighting his cancer . 

So well everyone is right it's normal everyone does I would just urge caution and be sure you stop to enjoy life still and enjoy speading time with your dad . Don't let cancer define your life like it seems to have been doing to me these last few years and don't let cancer own your relationship with your dad if that makes sense . 

I now am in therapy and talk to our pastor and have started to focus on getting my mental health back to 100 percent so I can be there for my dad and enjoy every single moment of life cause it's far to short for all of us . So not trying to bring you down or nothing it's great your fighting for your dad and worried about him . I am confident both our dads will be around for a long long time . 

 

P.S congrats on the baby so happy for you and your husband :)

MandiePandie's picture
MandiePandie
Posts: 76
Joined: Dec 2020

I'm so worried, because jusy a few weeks in I already feel burnt out myself. Do you feel guilty for trying not to think about it? I can't even try not to think about it anymore and knowing how many people are suffering and what lies ahead for my father makes me unable to think of anything else... as if somehow if I just think hard enough I will find the cure or something. 

I spent a few hours with my dad yesterday and it was nice but at the same time not, I'm so angry that nothing will ever be the same, so scared to lose him. It seems every move I make is just horrible when I think about it, and I can't stop thinking about it. 

of course I'm one of those people that was raised religious but thought it was so silly once I got older. And now I'm just praying and begging into the void and getting angrier and more scared. I wish I could have faith but I've trained myself to only see the outcomes of others and proof of what could happen and this whole journey has been too negative so far and only seems to be getting worse. I too have a therapy appointment comming up so I guess I'll see if that helps. 

thanks for the congrats. Bittersweet to say the least. 

worriedson714's picture
worriedson714
Posts: 253
Joined: Dec 2019

Yep I feel guilty anytime I have fun or I don't think about it it's like when my dad is suffering I feel like I should be suffering with him or what does that say about me ? I know it's crazy but it's honestly how I feel alot it's changed how I see the whole world . I know I'm going to sound dumb but before this I had no idea there was cancer centers full of people fighting it . It's heart breaking everytime I am in a cancer center I admire all those fighting it so much and with my dad I dunno what to say sometimes . 

I feel helpless talking to him like I want to say something that just makes it all go away but I can't and I to struggle with thoughts of losing him . It's tough but I continue to push those thoughts aside every moment and focus on enjoying the good moments with my dad . Cause the good moments are still there as I am sure they are with your dad there just hidden under the emotional baggage of cancer . Therapy is really helping me alot just being able to rant to someone about all my thoughts and there paid to listen is wonderful cause I'm a talker :) 

Kazenmax's picture
Kazenmax
Posts: 449
Joined: Feb 2016

Wonderful news! How exciting! Congratulations! Wishing you all the best!

I stalk the board. I also fade away when it becomes too much. I often want to post a response but I feel like I wont say the right thing.

I also look up people, read their bios, and search names. At first it would throw me into fear and depression. Then I realize that for the most part, I have no idea why people are gone from the board so I like to think that they are cured. For myself, it been almost 5 years. And the one thing I learned is that everyone's story is different. Some end too quickly but we all have had similar struggles. please take encouragement where you can. When it scares you, remember we are all different. and try to enjoy your life and your babe. 
k

MandiePandie's picture
MandiePandie
Posts: 76
Joined: Dec 2020

I wish I could feel more joy now. In fact I'm worried I may be harming the little one by being so distressed. A year ago I would have never imagine i would be in a situation Like this and even though I would love a baby and want my father to at least meat his First grandchild, it all seems stained with cancer, tainted and a happy time ruined because of a disease so unspeakably evil. 

you're among the first people to tell me congrats as you all are among the first to know. thank you for that, it's nice to hear :) 

SnapDragon2's picture
SnapDragon2
Posts: 516
Joined: Nov 2019

The whole nightmare is a step by step process with curative intent.

I have learned expanded bloodwork before surgery and before chemo can tell you a heck of alot now or later depending.

LifeExtension.org has yrs and yrs of knowlege and are there to help you.  So, I would start there seriously instead of overloading yourself with to much info right now.  Do the important basics first.  Prepare for surgery (life extension protocols) and expanded bloodwork panels.  Then on to the next step.

Annabelle41415's picture
Annabelle41415
Posts: 6694
Joined: Feb 2009

Congratulations on the baby.  That's is a wonderful event to be coming up so you don't want to be too stressed that you neglect your own health.  Take care of you and that little one.  It's important that you can get some worry free time every day.  What a Blessing.

Kim

feckcancer
Posts: 142
Joined: Jun 2018

Fantastic news you are having a baby. Congratulations. 

Having said that it must be so hard for you, hormones go mad and make you cry alot anyway when you are pregnant , add your dad having cancer and the covid pandemic no wonder you are crying heaps and looking for any glimmers of hope in what must feel like an over whelming time for you.  i don't think reading to much will be helping, when i had cancer i had one look online and terrified myself so much i didn't look again until my treatment was finished . i think the trick is to stay totally focused on and in the moment and put all your energy into your dads health & healing and doing what the doctors tell you. any dark thoughts from now on make yourself think to yourself i will think about that only if it happens . make the effort to replace dark or sad thoughts with positive prayers, healing thoughts, what ever uplifts you . get some couselling too if you can. you will probably find that more helpful than constant reading which leads into overthinking. 

5 years ago i was helped so much that i promised myself , like Kim, that if i got through this i would help others going through this. i now do volunteer work at our local cancer centre and we are told over and over to suggest counselling to patients or family especially if we can tell they are upset. we are reminded often that cancer not only affects the patient but all their friends and family too. it is really important to look after yourself because the last thing you need is to get sick or burnt out yourself because then you will be no help for your dad or your baby.

i hope this is helpful for you. i wish i could give you a big hug. Tomorrow when i go beach walking i will be sending Aroha and prayers/healing thoughts to you & yours.  

Congratulations again on your baby news.

kia kaha.

Stay strong. be brave.

xx

 

 

darcher's picture
darcher
Posts: 298
Joined: Jun 2017

The majority of people have probably moved on not wanting to remember what they went through. For a good while I did it as well. I figured, I beat this thing why go back and relive it again. But some feel drawn to be a guiding light to others who unwillingly step through the door. After the second incident I got the same tug and well, here I am, lol. As much as everyone has said, it's probably no use. We've all done it. Looked up everything and focused on the negative details thinking that's what is going to happen. Truth is, the overwhelming number of cases come out just fine. The majority of those who didn't make it either had other complications, waited too long, or indulged in voodoo medicine that worsened their condition leading to their demise. Do what the doctors say and your father will be fine.

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