STEAM ROOM FOR ANGER

jaycee49

Lula, that case you describe is kind of extreme. Many patients do understand the disease/condition and it's treatment and do want to. That includes myself and most of the people I've met here. Doctors not wanting to discuss side effects because they think the general population doesn't think logically is overly paternalistic and just wrong. I agree doctors sometimes do this but they should not. My side effects are real and I want my doctors to discuss them with me. What you describe is exactly what I'd like to change.

Meow13

I can't find my pocketbook or shoes. Oh well, I guess I'll stay home. Still feel crappy from this sinus tooth infection only 2 pills left. Not getting much attention from doctors mine are on vacation. I want to go on vacation but can't for 2 weeks.

Amica

Jaycee49,

Interesting. Also, have you ever noticed that if you look at actual drug prescribing information, which is based on randomized double-blind studies, the control (placebo) group always reports a bunch of drug side effects at often close to the the same rate as the group that is receiving the drug! Just being on a "drug" even when it is nothing but a sugar pill, people report side effects. But of course they also report "benefits." Just shows the power of the mind, and how we interpret things!

I never like to know most drug side effects, like joint pain for example, because I feel then my mind will instantly grab onto that symptom, and I'll start feeling that way!

But I do agree doctors should be upfront about serious side effects like potential cardiac risks and things like that.

But really it's all online in the prescribing information or from your pharmacy.

runor

Jaycee, do NOT give up thinking. The world needs more thinkers!

Does there always need to be a positive note? I think there is no one right answer to that. I think it's a case by case judgement call. However, there is always that one Pollyanna, you know her, her braids were never lopsided, her dress was always perfectly pressed and she got As on all the surprise spelling tests. She raised her hand and stood smartly at attention to answer the teacher, her voice never wavering. If there was some shitty situation that required commiserating, she would skip in like a barf inducing ray of sunshine and be that pissy positive person that everyone wanted to slug. So I think that comment 'on a positive note' was less about having to find positivity in the situation and more about the person who wrote it calling attention to how wonderful and different and high minded and spiritually developed they are (gag). That comment was pure attention seeking and a subtle reprimand to all you other Negative Nellies that it's better to think like her than like you. Tutt tutt. I believe that sometimes situations are shitty, all you can do is acknowledge the shittiness and not gloss over it and diminish it with a positive spin. Sometimes sharing the misery is a true act of friendship, without having to make it all better. Sometimes people who have to make it better do so for their own comfort, not yours. They do it because they cannot cope with the inner turmoil of feeling powerless and miserable. They will not sit with those bad feelings. They have to scurry to make them all go away. It can be, in some cases, an act of cowardice. It takes backbone to bend under the weight of someone's unhelpable misery. To stand with them and not make it anything other than what it is.

DO some people imagine side effects because the doctor mentioned them? Yes. The power of suggestion is strong. However NOT being honest about side effects is assuming your patients are stupid and that you (the doctor) are in a position to edit and manipulate information so that the outcome is not problematic for you. I believe it is possible for doctors to open the door to truly hearing their patients by saying something very neutral, but that shows they are willing to respond to any issues that might arise. Like :" This drug has some very rare cases of side effects and I have read about them. But in the vast majority of users, it is very well tolerated. That is why I am choosing to give it to you, I really can't foresee there being any problems. But if you notice anything, please do not hesitate to call the office." I feel something like this sends you off with a partial reassurance that all should be well, but a willing acknowledgement that it might go the other way and if it does, the doc is there, willing to hear you out. The doctor does NOT have to read you the package insert. Those who are very worried can do that themselves. But I do think not acknowledging the possibility of side effects leaves many patients feeling pressure NOT to report problems.

Cpeachymom

runor- Most of the time I agree with you, but we differ here. I think I’m one of those who do try to be positive and make people feel better. I try to put a positive note to things, to look for a silver lining. But it’s because I know things could almost always be worse. I had a shitty childhood, and was on my own and homeless before I graduated from high school. But...I learned independence, I learned to be a fighter, I learned that there were good hearted people who were willing to help. I had an abusive first marriage to an alcoholic turned drug addict. (Poor choice on my part, I know) But I had two beautiful children who gave me strength and a reason to struggle on. I got cancer, but I live in a first world country with a cancer center 15 minutes from my house.

So yes, I do try to find the positive side of things. But it’s not because I’m clueless. And I do recognize that not everyone wants cheering up. But Hope is a powerful thing.

Micmel

I agree that hope is a powerful thing. I believe most of us have had shitty childhoods someway or another. I had hope that maybe I would be a happier adult and not be saddled with yet another mountain to climb... except this time I am not going to get over that mountain. Cancer has seen to that. Now I shake my head and pretend to listen. Hope never made me rich so I can pay my medical bills without starving ...hope never took away my cancer to allow me at least an adult happiness and security. Something that was never In my childhood. Everyone has to learn to be scrappy somehow. Life is hard.... hope or not. And far as being positive... that’s great. We all need a little sunshine now and then. So keep spreading that positivity!!!!!

Much love~M~

Lula73

Jaycee-when you're working on a daily basis with patients who don't have a clue and don't think using the logic more pro-active patients do, you realize that ladies like us are the exception. And we tend to surround ourselves with like minded pro-active people and that becomes our view of the average patient population. I never thought that way until I started witnessing it everyday. It totally baffles me. I'd like to think the example I gave was extreme, but trust me when I say it's not, it's just one of the more recent ones that stuck with me. Unfortunate. Makes me even more grateful for this site and you ladies.

jaycee49

Thank you, runor. I was starting to think I was alone on both of my issues. The positive note thing is up for debate and I can see both sides. My friend with the throat surgery actually posted later that she felt fortunate (even mentioned being in a first world country like Peachymom) and was grateful for that post by her "dumb as a rock" relative. Woke her up. Fine. I get it. Some people are just positive all the time.

On the side effect issue, I was really worried that everyone thought they are all in our heads. I'm glad I'm not a patient at Lula's medical office where they seem to assume patients are generally illogical (stupid) and side effects should not be discussed. Just like with the side effects, if you have that idea in your head, it will prove to be true (even if it is not). And any perceived side effect, whether psychosomatic or not, is just as painful/bothersome as a "real" one. These issues need to be discussed/explained patiently and calmly to patients during any medical visit. Now I know where the blowing off behavior of my former oncologist comes from. Any side effect I would bring up, he would say, "that's not a side effect of this drug." No explanation. No wonder I stopped telling him anything about side effects. And changed oncologists.

Amica

I agree that doctors can be too quick to blow off a patient's concerns.

Case in point, I have a small white nearly translucent spot on my forehead. My family doctor looked at it, and breezily said, "Oh, that's nothing to worry about." I have a new medical oncologist I just met with for the first time last week, she looked at the spot, and said, "That's not cancer."

Yesterday I accompanied my father to his dermatologist. She saw me and she said, "It looks like you have a basal cell carcinoma on your forehead. You need to get that biopsied." She told me it is not urgent, and of course no one knows for sure what it is until biopsy.

And I went online and saw that breast cancer patients are at higher risk for skin cancer and vice-versa. Don't the doctors know that?

edwards750

I think we all know people who find something negative in everything. They thrive on turmoil. That’s just as annoying as someone who is a super Pollyanna. I’m somewhere in between.

I acknowledge and deal with the bad because what choice do I have but I don’t wallow in it. My MIL was the stereotypical rose colored glasses person. You didn’t have permission to be angry about something because....even when they weren’t her situations to deal with.

We can hit a happy medium. Realistic, hopeful and guardingly optimistic.

Diane

Cpeachymom

micmel- You are one of the sweetest ladies on these boards. I see you give understanding and encouragement to others. I know you are suffering, but you use even this awful disease to try and help others. There is strength in trying to make whatever good we can come from this monster. Thank you.

Stllivin

Cpeachymom- I agree wholeheartedly with your post regarding Micmel. You said it beautifully! She is always an inspiration to me as well.

Stllivin- Suzy

Micmel

omg I never expected to read something like this. 😪 I am very touched. I care deeply because I understand. I am a very out going person. It's my nature... but I cannot tell you how much I appreciate you all even noticing me. I am like you, trying to find my place. My safe haven. I cannot thank you both enough for sharing how you feel. It truly touched my heart and I will never forget it. Ever. ❤️ Much love and friendship ~M~

SheliaMarie

Stillivin - am I reading that right?? You’ve had MBC for 21 years??!?!

Stllivin

oh gosh no, (I had a hard time figuring out how to properly fill in all my info. - so I just gave up) 15 years with bc andMBC only 5 years working on my 6th. I was 36 went I first got bc, my kids were 6 and 8. I've been fortunate to see both graduate high school and college and buy there own homes and one get married. Even with all that wonderfulness, the MBC threw me for a loop and it's been such a hard emotional and physical battle and I can't figure out why. (TMI) but felt good to get out.

I do hope for 20 more.

Micmel

so do I darling so do I. You deserve it! 💙~M~

SheliaMarie

Stllivin- not TMI at all!! I’m only 15 months out from my MBC diagnosis, and I completely understand the emotional and physical battle, and quite honestly the fear that I’m losing both! I see how much other people continue to do, and cannot help comparing myself. I just don’t think I’m handling it as well as I should be.

Lita57

Shelia...I was In shock for 3+ months after I was Dx'd st IV de novo w.mets everywhere. I could barely walk w.a walker. All I did was lay around and watch TV.

Don't doubt yourself. You will handle it the way your character allows you to handle it. Don't apologize, and try not to compare yourself to others. We are all on our own paths, and we all have our own way of dealing w.it. There is no right or wrong way.

KatyK

Had a pretty tough emotional roller coaster of a day for a lot of reasons. Reading some previous posts I absolutely agree that there is no right or wrong way to go through this but go through this we must. Hopefully with love and compassion from others. Long story with too many twists but I have a sister who just cannot understand what I’m going through, just no empathy there. It’s really odd and of course hurtful. So the gist of today is that she cancels she yet again on me and when I tell her I can’t trust her I get back a nasty text of basically how it’s my fault and ends with how she is there to support me. Really, how? Every time she has agreed to do something for me she has canceled and she just doesn’t get how much this hurts me right now. Some people just don’t understand how hard this is to go through and that we need compassion. I do have a wonderful husband and other family and friend that support me and I try to focus on that. I can’t keep the people in my life that hurt me. The cancer is hard enough. What do you ladies do with the folks that just can’t seem to help and actually hurt? It’s very confusing to me. Thanks for listening and hope everyone gets a good nights sleep.

Artista964

My fam doesn't know about me because i don't have the mental strength to put up with bs talk or actions. Imo its healthy to cut out people in your life who aren't a positive, fam or not. It's very liberating.

Micmel

definitely agree... get rid of the toxic relationships. There is no reason to waste time on people who would not walk over a puddle for you ... no less an ocean . So to speak. It's better to focus on keeping well. I have cut out many many people from my life. Including the majority of my family. They are annoying and selfish. I don't have time for that. I do have time to tell them where to place their issues... they don't usually like that. But oh well. I don't want to hold anything in anymore. It's too hard to worry about other people's feelings. If they won't be worried about yours.

Much love ~M~

runor

Peachymom, to be clear, I (believe it or not) try to be positive. I have told people to wait for the light, it will find them.( I am not talking about a traffic light here, we ALL have to wait for those!) I have told them to hold out, quietly, still. Life may never be the same again but that does not mean we won't have brief flashes where life is good and we smile in our hearts.

However, Jaycee was talking about how someone of Facebook chimed in with the words 'on a positive note' and I took issue NOT with positivity, but with how it was presented. Positivity can be offered generously on a silver tray OR someone can use that tray to bash you over the head. And I think Jaycees example pointed to being bashed on the head by someone grandstanding for attention. So positivity is not the problem, it's the way it's handled that I get annoyed about.

I have good days, and I want my friends to be happy for me. I have bad days and I want my friends to be patient with me. If I am having a bad day and someone starts lecturing me on how I just have to think about how much worse it could be (and that is likely what I AM thinking about and what's making it bad!) well, that day is going to get worse quickly. So yes. We have to shift our focus when we can, for our own sake, and offer hope and gentle support to those trying to pick themselves up. But some bouncy cheerleader swooping in 'on a positive note' to make a party out of it all and turn our frowns upside down. People get hurt that way!

Artista964

it depends on who is saying it. My bff says it could be worse, stage 4. Her sis died 4 mo after dx from pancreatic cancer. I chose to take it that yes if i have to have had cancer that I'll take stage 3a any day bc. I dont know why but other types of cancers scare me more. Maybe because you can't take organs out. I do feel at ease having had bmx and chemo and rads even though there is still always a chance and I'm high risk. I used to have some anxiety but I've learned to not think about what ifs in all aspects of life for stress alone can create or worsen health issues. I'm more zen like nowadays just taking things as they come. If i progress I'll deal but I'm not going to spend a minute of worrying for life is short. Having had 3 people my age die unexpectedly makes you think.

KatyK

Thanks for the input and I think you’re right - for now I will have to not have contact with my sister. I got dx about a year ago and this entire year with her has been bad, she just doesn’t get it and causes me more emotional pain when I have enough from a stage IV cancer diagnosis. For some of us our situations could be worse and I try me best to focus on good things I need my life but when others tell you this I find it minimizing and not letting you have your feelings. I do not like when people try to talk me out of my feelings

JJOntario

I'm 3 yrs post treatment and need to rant. I've torn my rotator cuff on my BC side and I'm so tired of the pain I could scream. I'm tired of there always being something, tired of finding out that radiation can predispose you to more than I knew, tired of appearing like a wimp ...I'm just so sick of this all. I don't have time for drugs that also make me hurt. I'm supposed to be getting on with my life by now...not always dealing with pain. I'm try ing to get into PT.

mustlovepoodles

Gosh, JJ. I wish I could give you a gentle hug, or at least a "low" five. Torn rotater cuff is soooo painful. I'm a big believer in PT. Hopefully, they can give you some relief.

bcincolorado

Mine is off on my OTHER side. I think I over used it and messed it all up. DH is nagging me to go get it checked by doc. I say I can only deal with one thing at a time right now. Still recovering from biopsy in my mouth and had to get full dentures before age of 60 and issues in mouth because of reactions to cancer meds. It makes you old before your time if you ask me. I feel like an old person now. Senile from cancer and SE. Hate cancer. Hate people who say "you are a surviver" when it just means I haven't' died yet.

Amica

JJOntario

That sounds so painful! I hope you get PT real quick and get some relief as soon as possible!

bcincolorado. I hear you, and it does suck. hugs.

Amica

Pi-Xi

Amica, further to all the holidays in Canada...did you see this today?

https://www.cbc.ca/news/politics/ottawa-federal-ho...

I immediately thought of you! Personally, I never thought we had many holidays, you have heightened my appreciation of them though! I hope you're doing okay.

SheliaMarie

Strangely, I functioned really well the first 11 months post diagnosis stage IV. After my treatment plan had to change, I’ve just gone downhill. I literally have a hard time doing ANYTHING anymore. It takes so much energy, and I usually end of short of breath. Truly, I think it’s lack of emotional well being more so than cancer. And I’ve been on anti-depressants for years. All I do nowis lay around. It’s sad and a bit scary. Now, the pain is very real. And if it’s not one pain, it’s another. I finally got some relief from the terrible shoulder and armpit pain, only to start struggling with my back. Is it the mets? Is it muscular? Whatever it is, I can’t seem to find medicine that helps. It is relieved with lying down, but it is excruciating with sitting. It’s hit or miss with standing. Ugh. I’m falling apart.