STEAM ROOM FOR ANGER

pajim

May I say that I HATE this time of year?

I feel fat (somewhat true), ugly (not true) and like I can't do anything right. Poster girl for mild depression, yep.

But then I realize that I felt like this last year same time, and the year before same time. Could spring arrive please? Soon?

Egads007

Pajim - Yes you may say it. You're not alone, and definitely NOT fat nor ugly! Try a google search on SAD (sunlight affective disorder). It ranges from very mild to totally debilitating for some poor folks. My husband is in the medium range and uses a SAD lamp from early September to April every year. Makes a huge difference. For me it's closer to having the blahs in February/March. Interesting stuff, might be why you're noticing it annually.

I echo your request - SPRING SHIFT YOUR BUTT OUR WAY PLEASE!

Anonymous

Today it rained like it really is Spring. But since I was born on March 25th in a blizzard I am waiting for the out like a lion to hit.

Back to the conversation a page ago..... my nurse navigator does not know the symptoms of various cancers. I described liver cancer symptoms to her for months before I finally Googled it and found out I had the symptoms of liver cancer thus bc mets to liver. Then and only then did the next scan reveal the lesions. btw, some are feeling full after a few bites of food, tired, losing weight for no real reasons, abdominal pain, nausea, dark urine, and more. All she ever offered was drink more fluids. All I ever told her was a sip of water filled me up. And it was torturous to drink anything let alone eat back then. I have no faith in her input now but she is still my navigator. She used to be a hospice nurse too. My daughter says she does not pay attention during meetings w the oncologist either, just daydreams. I found that to be true, but she is still my lifeline, for what it is worth.

jaycee49

Hey, I was born on March 25 in a blizzard, too. Happy belated to us.

TaRenee

Why is it that doctors think we have nothing better to do than reschedule appointments? This makes the 3rd time my MO has had to reschedule my appt. I work too, just in case he was wondering. And I have to take time off work to go to the doctors. Now I have to take ANOTHER day off because he had an emergency and won’t be seeing patients tomorrow and he’s not in next week. Well guess what? Next week is better for ME! Ughhhhhh

Meow13

I have zero tolerance for my 22 year old son lying to me. He simply takes money and lies. I thought breast cancer was the worse thing to happen to me. Having son stop talking to me after he has lied for months.

So angry.

Anonymous

Janet was it in the Midwest like northern Indiana in 1957?

TaRenee I think billing for a lost days work is appropriate.

Anonymous

Janet was it in the Midwest like northern Indiana in 1957?

TaRenee I think billing for a lost days work is appropriate.

jaycee49

Bluebird, nope, Connecticut, 1949.

SheliaMarie

They say that writing is cathartic. Let's see if that holds true for me. There are days, like today, that I feel so incredibly alone. Uncared for. This is going to sound contradictive, because in all honesty, I long for time alone. But this loneliness is different. A part of me is angry. Another part is just sad.

Words no longer mean anything to me, and there's a part of me that just wants to "break up" with my friends. I mean, where are they? They all say, "what can I do"?, but it's just words. They don't show up. Even if I ask them to, or ask them to lunch or whatever, they're always so busy with their lives that they can't see that I need them. On the rare occasion they do come by, you'd be hard pressed to find one actually ask how I'm really doing, what's going on with my treatment, or offer any help of any sort.

My kids cry (and I know it's sincere) about my impending death, but even when I ask or even offer to pay them, they don't help with the housework. Legitimately, I've lost the motivation to clean the house, when I do, I'm in physical pain, and every single day of my life I feel exhausted, like I've ran a marathon. And that's just from getting out of bed. Yet, I've hinted, offered money, and even guilt tripped, all to no avail. They say they will, but it never gets done. And I have pain, mostly in my shoulder, which massage really helps with. But they will outright say no if I break down and ask for them to rub it.

My husband seems to not even acknowledge or remember what's going on with me. He thinks he's being funny, but he often makes comments about my lack of cleaning, or cooking. Mind you, he doesn't "clean" or cook. He will do the dishwasher and laundry, and for that I'm grateful, but damn! Scrub the shower and toilet, or sweep and mop the blasted floor sometime! And about that massage of my painful shoulder? Yeah, he'd never do anything like massage that.

The one exception is my mom and grandmother. My first go round with cancer, they never came. I had young children and I had to undergo a very harsh treatment, but they never showed up to help, they never showed up to occupy the kids, they just never showed up. They would call, usually about once a week to ask how I was doing, but eventually that just pissed me off. I actually left a voicemail greeting that stated:

"If you're making your dutiful weekly call to ask how I am, I'm fine. Obligation satisfied."

And I stopped answering my phone. Honestly, it seemed to get my point across to most people.

After I finished my treatment and my grandfather got sick, I made it a point to be present. It was during this time that I let my mom and grandmother know how very hurt I was by their lack of presence. It was an ugly admission, and I know that it hurt them, but they had hurt me so incredibly bad, and I knew that I'd never recover from that unless I told them. This time around they call almost daily. Almost "too much"… that's awful of me, right? And they sincerely want to know what they can do to help. They offer to go to appointments with me. They offer to cook for me. I always decline, but the offer means so much. Honestly, the thing I need most help with, housework, they aren't physically able to do. They are both in poor health.

Cancer is lonely. Most people don't know if they should bring it up or ask about it, but I feel selfish if I'm the one to mention it, even though I NEED to talk about it. I have to be positive for everyone around me, pretending that I'm okay, when inside I feel like I'm drowning. And then there's the whole, "yeah my (blah blah blah)….", whenever I do bring up my issues. As if we're in some weird sort of competition. What happened to people who take what you say is bothering you and then sincerely ask about what is going on. What happened to people acknowledging that I'm SICK? And that I will be until the day I die.

I recently got word that my cancer has progressed. I will now have to start chemo, whereas I was on oral medication. When I told my friends and family, I downplayed the seriousness of this. But shouldn't they know me better? Shouldn't they see the emotional pain that I'm in? The fear in my eyes? Or hear it in the tone of my voice?

Aside from housework, the thing I need most is someone I can honestly talk to about it. To tell my fears to, to cry to, someone who will listen and be supportive. As I said, I'm so incredibly lonely.

Lita57

Swess, is there a stage IV live group in your area? It can help.

Accept some help from your mom. It's better than nothing...or you can PAY a cleaning service if you'd rather spend the money.

I understand the loneliness and desperation. I'm on my third line chemo...these last 2 have been IV. No fun, but you get thru it. Do you have a palliative care person? They can hook you up with some counselling.

There is no shame in reaching out.

L

SheliaMarie

Well, now I feel like an ass. My oldest daughter stayed late and cleaned everything. My house smells and looks so good. And now she’s driving over an hour home so she can go to school and work tomorrow. I love and appreciate her so much.

Egads007

Swess- I do hope your beautifully written catharsis gave you some relief. Print it and give a copy to all those concerned, prefaced with a request for loving change within the family, for them to read it without guilt, and that you’re simply needing them to know the depth of your despair right now.

You’re not an ass, you deserved your daughters kind deed today. I pray it continues with all those around you.

Keep posting, we’re all listening and really do want to offer loving support

DancingElizabeth

In the waiting room, to get labs done. This time they include - tumor markers.

I am frightened and will be frightened until my follow-up Appt on Wednesday.

My palms are sweaty, fingers are cold, feel like I might throw up and heart beating fast. And, only waiting to have the blood drawn.

I am also - Angry. There are so many people who look like they are in there 80's and 90's here. I feel like - why did I get BC so young???? Why couldn't this have happened to me at least until my 70's? Or at least 60's?? Why couldn't that have been me. :-(

DancingElizabeth

In the other hand - there is a very young looking lady in here. Who can barely walk. She looks like she is in pain.

This is a cancer center. So, I imagine she is not doing well.

I want to Cry.

lovepugs77

DancingElizabeth, I know exactly what you mean. I had many similar moments during treatment last year while looking around the waiting room. I was 39 at DX, and through most of my treatment, and I often was the youngest person in the room by at least 20 years. I know cancer sucks at any age, and that life isn't fair, but getting cancer at a young age is a special level of unfair, IMO. I feel like I spent a year of what should have been the best part of my life in treatment, and those treatments have left me unable to have children. Now I get to deal with lymphedema, a numbness in my shoulder and tricep, and the constant worry about it coming back or spreading. I try to stay positive because it makes me feel better, but I have some moments where I just want to scream about the unfairness of it all!

I hope your lab results come back good.

bcincolorado

Swess good for you. You needed to vent and glad you were able to get some help fro your daughter.

Cancer is the stinkiness that just keeps giving no matter how old you are when you get it.

SheliaMarie

Dancing - I, too, get angry about being so young. Without any family history or any risk factors, I was originally diagnosed at 31. My recurrence happened at 40. I always looked forward to getting old... watching my children enter and complete each milestone, watching my grandchildren grow up, celebrating being old and wrinkly with my husband.. who (by the way) always said he was going to “accidentally” run my wheelchair into walls when we’re old. We always laughed thinking about that. He would totally do it

On a good note - I spent the entire day with my son. We had a tough conversation, but I finally cried it all out and admitted how I’m feeling. I pray he doesn’t take this onto his own shoulders, but gosh it felt good to get it all out!

My eyes are sore and puffy, but I'm so grateful for the day with my boy. He leaves on Friday for a month in India, so this time was super precious.

My chemo was postponed. My primary insurance approved, but my secondary was hem hawing and insisted on a peer to peer. Unfortunately it’s spring break and my oncologist is out of town. So I guess it will start next week. The crazy thing is my husband pays $900/mo for us to have this secondary insurance. Fun times, I tell ya!

Anyway, thank you to all who replied to me. I’ve held it all in for so long, I needed that. Goodnight all. Sleep well.

runor

Swess, I am glad you cried. I was going to say to go ahead and cry because sometimes it is the only sane response to an insane world. Hugs to you.

DodgersGirl

I really dislike the way my cancer center handles patient communications.

I finished the main treatments in November. Meaning I am now in “monitoring” mode where I see the MO every 3 months. They do blood work and physical during these appointments. The idea is to see how I think I am doing and see how the blood work looks.

I had my 2nd of these 3 month appointments last week. I haven’t heard anything since. Was blood work ok?? Or have they not read it yet? Seems there should be some kind of notification that things are ok after each appointment. Even just a note sent to patient portal would work. But now I am just waiting to see what’s happening.

I have an appointment with clinical trial nurse tomorrow morning at the cancer center so will ask about blood work then.

Just really disappointed with the lack of follow ups unless I initiate the communication

Ok... done whining

lovepugs77

DodgersGirl, that would bother me, too. My cancer center does the blood draw as soon as I get there, and the MO goes over the results with me during our appointment.

DancingElizabeth

Lovepugs - you stated it perfectly "getting cancer at a young age is a special level of unfair..." It's just cruel and people say "everything happens for a reason" - well - does my potentially dying young - make things better? Tell that to my 11 yr. old DD who might have to lose her mother at a young age. I'm sorry about the lymphedema. BC is the gift that keeps on giving...

Swess - a good cry is the best medicine.

Dodgersgirl - They tried to get me to have my blood work done before my follow-up appointments. But, I come in (a few days before) and do blood work, so the results are ready by the time I have the appointment... It's not the most convenient way to do things. But, with getting tumor markers done - its the only way for me that I think works. (Tumor marker results take a little longer to come in)

Sometimes - my own mother whines and complains about "getting old". I wish I could get old. I don't know - if I will be able to get old. And, I feel like her doing that is like a man complaining he has no shoes - in front of - someone who has no feet!

DodgersGirl

DancingElizabeth—. I am going to ask if I can get my blood work done ahead of my appointments. My hubby does that for him s physicals. Great suggestion!

Lovepugs77– my cancer center did that, too, when I was getting chemo but now they take blood and sometime in the next 2 weeks the results are posted to my portal. Of course, I don’t know YET what to look for in regards to tumor marker

lovepugs77

Oh, my MO isn't testing tumor markers. Maybe that's the difference.

Lita57

Everybody cheeses about Kaiser Permanente, but I get all my blood work results within a few hours online thru their portal after the draw. Feel sorry for you guys who have to wait DAYS to go over all of it with your MO.

It's essential that I get the lab results in a timely manner so I'll know whether to keep my chemo appt the next day or not. If the liver ALT's are too high, or the platelets too low, or the kidney levels wacky, we have to postpone the infusion for another week.

L

Dianarose

My cancer center has their own lab and I get results in twenty minutes. One appointment I have labs, results and seen by the doctor. Crazy you guys have to do it in two trips. That just sucks

bcincolorado

I think it depends on the cancer center/hospital you go to. We can get labs online even and read them ourselves and share with other docs we need to. I know we all usually end up where we are referred to start with but I know many who have changed as well. Maybe there is a way to get your labs you have been given privy to?

DodgersGirl

Dianarose and Lita57–. I think my blood work is back that same day because my clinical trial nurse had my results the afternoon after it was drawn (for most of the tests anyway. Some take longer). I believe the delay is from the process of the results getting to the MO and then being released to my portal without a plan of making sure the patient sees the results. Feels like once out of active treatments, I am a step down in the importance of MO’s time to read results and share them with me. Sigh.

This will be a topic at my appointment with clinical trial nurse tomorrow morning

Lula73

Swess- I saw this today and thought of you. We could all probably benefit from this service too, truth be told...

runor

Went for last follow up appointment with the radiation oncologist today. Was ushered into the room by some nurse/intern/lunatic who asked me a series of questions that the onc was going to ask me again 5 minutes later. But I dutifully answered and she asked how I was doing and I said pretty good physically (which was not entirely true) but I said my mental state was a problem. She looked at me like I had two heads. Oh? How is your mental state a problem? Well, you know how it is after cancer, it's hard to get on with life and feel normal, it's hard not to think every bone ache and cough isn't the cancer.

She blinked at me a few times, silent, just enough time for me to feel really stupid. She said, have you spoken to anyone about this? And I wanted to scream YES, ABOUT A BILLION WOMEN ON BREAST CANCER DOT ORG WHO SAY THE SAME FLUCKING THING AND WHO FIGHT THE SAME DAILY MENTAL BATTLE AND HOW IS IT THAT YOU, YOU STUNNED COW, DO NOT KNOW THIS IS A COMMON AND HORRIBLE AFFLICTION THAT GHOSTS MANY, MANY CANCER VICTIMS?

Bloody hell! If you work with cancer people in any capacity, when one of them says they are struggling with the mental state of cancer, you should be nodding your head in recognition of this almost global phenomenon and not gaping at me like I hit you with a dead fish and then muttering to see if I have talked to someone, as if I am somehow abnormal! God, it was like taking your dog to the vet and your vet doesn't recognize a dog or what they do! I wanted to ask her, how did you get this job anyway?

Worst is that I left feeling defective and inadequate. What? You haven't gotten past this, let it go, moved on, dealt with it, woke up and realized it's all a bad dream? Even as the powers shuffle their feet over this 'thing' that isn't growing or changing, but frankly shouldn't be there, we're not calling it cancer, we're not doing a biopsy, but we're not NOT calling it cancer either. But in the face of this dithering, why don't you just get on with life like everything is the same. Only NOTHING IS THE SAME! I know damn well I have to get my shit together and I think I am, bit by bit, day by day. But that stupid woman today really pissed me off and made me feel like a loser for not being all Mary Fuckin Poppins. Blah.