Stupid brain scans making me lonely

Meggy

Stupid brain scans making me lonely

Meggy

Hello my triple negative sisters....I'm feeling pretty low and lonely lately.  Maybe because I haven't been in here with all my sisters lately.  So...I have had weird light filled shapes moving in the sides of my vision for three months now.  Opthomologists (2 good ones) said it is not explained by my eyes/retina.  Then I saw a Stanford retinal specilialsit and he siad also that there can only be 3 causes. First, my eye/retina which shows no explanation.  The second is my optic nerve which looks fine...no explanaiton.  Third is the brain.  I had one brain scan 2 months ago and it was clear but now I'm all worried that maybe it is in my brain and it just hasn't grown enough to be seen.

So depressed...so much waiting and so many visual disturbances.

To make it worse, my 12 year old saw me crying and crying..then refused to show up for baseball in part because when I'm upset, he's upset.  So...the coaches tell us if he quits this All Star team, he'll be labelled a quitter and it will follow him to highschool.  Thanks guys for making my torment so much worse.  (and baseball was one of my main sources of joy)  So...to cover my little boy's back, I have to send a flippin email to the whole team saying my kid is under distress because I've been battling cancer and there is a new issue.  Now...it's like I have no friends.  The guys who were hard asses (who were people I cared about) to begin with didn't seem to give a rats ass about what was going on and the nice people are treating me like I'm going to die. 

Just so pissed I had to share this bull with a bunch of people.  I lost my so called best friend during chemo 5 years ago (obvioiusly she wasn't a real friend) and I have not told too many people becuase I'd rather have ignorant bliss. 

Not my usual post, but I am rock bottom emotionally right now.  I really feel like I have no friends right now. 

Because of lymphedema, I can't go out in really hot weather and do things or I'll swell so I turn down things....can't go to Tahoe becuase high altitute makes me swell.  Can't wake board anymore becuase it will trash my bilateral lymphedema.  The hubby isn't so supportive.  Just so lonely and sad. 

I just wish I had one friend in my town that I could spend time with and count on but I don't. So many of the women don't work but I do and by the end of the day my arms hurt from working and I just need to lie down. 

Stupid flashing lights.  Probably nothing but I'll be tortured till I find out.  I keep asking God for a year off from all the scares.  Just a year where nothing pops up to freak me out. 

Also,  my reconstruction is a joke.  right side failed and left side (healthy no rads)  looks like crap from platic sergions who just didn't listen to me. I'm swelling on my chest now so more plastic surgery is out of the question probably for a long time.  I don't want any lymphedema advice.  Trust me...I do everything...I just shouldn't have to work with so much lymphedema.  ]

Thanks for letting me rant.  So lonely and depressed.

Meg

Moderators

You can vent here all you need! We are all here for you. Not sure if it would be helpful, but do you think your son would benefit from talking with a professional about what he is feeling. Might be helpful for him to have a place to vent, like you have here. Just take one day at a time, and know we all care here. 

(((((Hugs))))))))

chrissyb

Hi Meggy, not one of your usual stage III girls but I felt I just needed to give you a ((((((((hug))))))))) and let you know there is someone listening. PM me if you like, I'm always around and happy to befriend you.



Love n UBS. Chrissy

Titan

Meggy...you are NOT alone...I'm with you waiting for the results of your scan...you do have way too much going on right now....your 12 year old needs to play his baseball...it may not be that important later (been there done that)..but for now he needs to play...

crap...hoping that these blinking lights are something that can be easily fixed..I hear you sister..the stress absolutely sucks

Alicia-Rae

Hi Meg, I'm in the exact same boat I'm sorry your going through this too. I've been having auras or flashing things in my vision and black dots in the corners of my eyes and to top it all off migraines every - damn - day. Had a brain MRI and it was clear and had eyes checked and they are fine so still can't figure it out. I hope that you get through this. You will!! I'm sorry your son is upset but I also agree that being in baseball with his friends will be really good for him. I am around if you want to vent! I understand when no one is supportive it's not helpful at all! But the ladies here are here for you!

Meggy

Alicia-Rae, that is so weird that we have such a similar thing going on.  My first brain scan showed nothing but then after seeing eye specialist after eye specialst (even a retinal specialist) they all say my eyes don't explain it....so now I'm getting another brain scan.  Maybe it is just nothing....I really hope so for both of us.  I hope were just have sucky eyes. 

It helps so much to hear from you sisters.  Thank you for letting me rant.  I could not have gone through all this without you.

HHCats

Meggy I was lurking and saw your post.  Your ranting is warranted.  I've seen some of your other posts and was always struck by how upbeat and positive you were.  You really inspired me - especially the nutrition posts.  I hope knowing that gives you a little boost.  But I think you need to give yourself big pat on the back because you are going through a lot and it's NOT easy - especially when you have young kids.  I'm not one of the usual triple negative posters.  I stay away from this forum because quite honestly it scares me!  But I lurk because I want to see how others are managing with this diagnosis.  I will be 10 months out on August 2 and am just starting to take the emotional bull by the horns.  But I have young kids, too.  9, 6 and 6 (yes identical twin girls).  They have seen me cry and they freaked out a little and the guilt I've felt with that was out of this world.  I've had to do the mass email of the details of my personal life for the sake of the kids, too.  It sucks but we do it for them.  I am really sorry you are going through all of this - the vision issue, lymphedema, and the reconstruction issues.  It is a lot to take.  Hang in there.

Robin 

Gammie5712

Meggy, I hope you are feeling better and got an explanation. I have lurked on here since oct of my dx and you have been my inspiration. Your were always so upbeat and You gave me so much information with nutrition.

Meggy

Chrissy, thank you so much for your hug and Gammie, I'm so glad I have been upbeat....hope to be again soon.  I think it is time for me to get into a counselor.  I just want some human being around me who understands.

I went to my onoclogist this week and she basically told me that she thinks I overreact to my cancer.  Wow.....now I feel like I've lost the one person in this world who I thought understood me.  I don't think our doctors know how much we need them emotionally.  I guess I'm supposed to not worry anymore but in the real world...its hard to stop worrying.

Last fall I had a huge lump on my chest a half inch thick and about the size of my palm.  It was so painfull....made me unable to work and my business really suffered and I feel into debt.  I ended up having it removed and it stopped the pain but only after 6 months of pain.  My oncoloigst told me this week that I over reatected to that lump on my chest last fall.  Dang....I never really thought it was cancer but it hurt like heck.  To get criticised about that is just stupid.  Now I feel like I have to find a new oncologist.  But first...I think I really need a psychologist.

I thank God I don't have recurrent cancer.  That doens't mean I don't need compassion....I think sometimes their opinion is shut up and be glad you're not dead.  I have painful lymphedema on both arms, my back and chest...I really do have a right to complain despite still being alive.  Sorry to be such a bummer....just so much responsibility and its hard when you have daily pain.  I'm really tired.  I work so much and have two kids and their dad has left the United States so I get no help.  Just so tired. 

Thanks for listening sisters.  I hope to be less needy soon.

camillegal

Meggy I was lurking and this caught my attention. I am so sorry u are going thru all of this. I can not imagine going thru this with young children, as so mny are, that seems like an impossibility to me and then alone. OVERREACT---I would have been in a clown suit, on a tower by now. U haven't over reacted to anything once u have cancer everything u feel, everthing u find, everything u think U have fear. So no u didn't overreact. And I hope u'r son can play baseball, but that seemed like u were like bullied about it. What's the matter with people. And counseling sounds like a good idea, there are also cancer groups u can check about, if u think that would help. But please don't let anyone make u feel unimportant in how u feel. It's all very important. We all take it differently and when u'r done with all the tough stuff, there are no rules on how to get back into u'r life with no repurcussions. And there are no rules in our emotions or in cancer itself. So why would u trust that it didn't come back in some way. I hope all u'r tests come out well and u can somehow get the support u need for u'r life. It all sucks.

chrissyb

Meggy, maybe you do need a new onc, one who would be a bit more compassionate.  I know it's a bit of a hassle but really the aftermath of BC surgery sometimes is way more difficult to deal with than the dx itself as it is ongoing.

Love n hugs.   Chrissy

Meggy

Robin, I just saw your post, I don't know why I didn't see it before.  I hope you visit here often, it has been my saving grace.  Camillegal...so funny the clown suit on a tower....and so true.  Chrissy....you look so much like a neighbor of mine...it makes me feel like I  know you.

Ladies thank you so so so much for telling me I'm not a nut job.   I just feel like I'm getting treated like crap at every turn....except here by all my wonderful caring sisters.  Truly, I don't know how I could ever have dealt with all this without you all. 

chrissyb

Meggy, there are times through this whole thing when we all feel alone as well as neglected but these boards are truly a gift as we can connect with others who know exactly how we feel and the isolation seems to disappear.



Love n hugs. Chrissy

Meggy

Hi sisters, so the plot thickens.  After my oncologist told me I was overreacting....the neuro-opthomologist told her that I must have two special tests to look for "Cancer related retinopathy or CAR"  I get the 3 hour test on Thursday.  I sure hope it is negative because if I understand it...if it is possitive, they then look for the cancer elsewhere in the body that is causing it.  Well, I guess I wasn't overreacting afterall. 

Breast cancer is one of the three cancers that tends to cause Cancer Associated Retinopathy. 

Truly, I think I am seeing hundreds of blobs of rolling light per day....it is extreme.  I can't believe it is just nothing.  I hope it is another type of non-cancer retinopathy.  There are other types.

I need prayers please.  I'm pretty worried.  Thank goodness the test is Thursday (September 5th).

I'll keep you all updated.  I really need no recurrance.  I've got noone reasonable to raise my kids.

Meg

Luah

meggy: I'll be thinking of you tomorrow, sending good vibes. 

JaneB1

Meggy -- mostly a lurker here who finds your healthy living posts useful and inspirational. Very sorry you are going through all of this. Thinking of you and hoping you have a good outcome today.

bak94

Meggy-How are things going? I saw this thread and then realized you haven't posted for a couple of weeks. Hope everything is ok.

tibet

Meggy, How are you? Pls update us and we are thinking of you.

Meggy

Sorry I didn't write for so long. I had a second brain scan and no one has called me so I'm assuming it's negative.

Thanks for all your thoughts.