STEAM ROOM FOR ANGER

Egads007

Suems - I think the bracelet is a great idea! I’m also thinking I’ll invest in one.

Micmel - thank you for mentioning the caution on scratching. The verysmall area I have does get itchy when it occasionally flares...good to know! Do you do self massage or see a massage therapist that specializes in drainage? 35 removed, man oh man do you have ever have a full plate! I’m sorry to read about all the problems you’ve had with it, can’t be easy! It is crazy that so few of us ever got any direction with this issue.

marijen

Micmel, that doesn’t sound like a mild case to me. It sounds terrible. I had 12 nodes removed that required at least 30 trips to LE PT over two years. Mine gets worse with heat as in hot weather.

Micmel

i know it is a lot. But once I got it down to a manageable swelling, after learning to wrap it when I needed it and then the pump whenever I over do it. Like for example the last time I used the pump was Christmas because I am stubborn and picked up something too heavy. But it is very slight and the reason it isn't terrible, is because I went into therapy right away. I just take my hand and always make sure the strokes on my skin are going towards your heart and always light strokes, not heavy massage treatment strokes. If you start to see problems occuring and it becomes something the doctors and therapy isn't helping. , because I noticed that I needed a lot of sessions. The co pays are crazy, like a car insurance bill.. That's why I payed close attention, and did what I could alone. The pump Is what made a big difference, it is like having a personal therapist waiting to help me. I got the pump from an organization called Connie cares. If any of you should need relief, and haven't gotten any, this helped me tremendously! Just goggle it. If you don't have insurance, they will get you one anyway. Mine was delivered to my door, I didn't pay a dime and my insurance did cover it. So glad to have it. It's something that needs higher importance with these doctors for sure! The entire crappy cancer experience is exhausting ! Goodnight ladies !! ~M~

runor

Egads, I have found that exercise has helped me, not harmed me. So in regards to your weight lifting I think you should be alert and cautious, but not worried. I lay on the floor and do stretches with my arm and body in every imaginable contortion, many of them painful, but it helps. I shovel and rake and dig and use lopping shears and none of that seems to flare me up. However...chopping wood, which exerts a lot of concussive force on my arms, that seems to flare me up. So as long as you do what you do and try not to jar yourelf brutally. For me that jarring has been a problem, not the exertion of muscle.

The other thing that is bad is when my arm is inactive at my side for an extended time. Like now, seated, typing. Or at the sewing machine. Or sitting watching tv. I try to watch tv with my arm raised straight above my head. I look like an idiot.

Egads007

Runor - you make an excellent point. I’ve taken 3-4 years to build up to the weights I’m at now, slowwww. If I hadn’t had cancer I would be at twice the weight in half the time. If I’d listened to bodybuilding.com or even my the trainer I used at the start, I’d be a swollen mass from LE. Instinct and indications from my body (perhaps some luck too) and not the very little info I got from my MO prevented it. However, and as you said, whenever I jar the muscles either by going too hard, too fast or too long, or cockily using weight instead of body weight on a new move, then bingo! Up comes the LE under the ribs and the ache sets in. You’re right again about inactivity, that sets it off faster than a duck on a June bug. Two days ago I was in the yard raking and now my ‘bad side’ wrist feels broken from the twisting & pulling motion you make with the rake. I basically ‘jarred’ those muscles in a new way, muscles that can take 3 sets of 45 lb deadlift or 100 lb chin ups. The next time I’ll do what you suggest and what I do in the gym, a slower/shorter build up...or just hand the rake off to my kiddo lol.

As for watching tv with your arm up in the air, nawwwww you don’t look like an idiot, you look like that smart kid in class that wanted to answer the teachers question first! If you added a quick upward reaching motion, you could yell ‘Mr. Kotter!’ And do a great imitation of Arnold Horseshack LOL!! seriously though I know what you mean, I do the same with my leg while sitting, extend it out to stop a tired feeling in my hip. I look like a turnstile

Slow and steady wins the race. Thanks for the input, it helped.

jaycee49

DH wears something called a RoadID bracelet. He runs off road where, if he fell or was injured or collapsed, the bracelet would give someone his basic info. We decided to get me one after my surgery, etc. They come in different sizes and lots of info fits if you want. Mine has just the arm limitations, etc. Probably cheaper than MedicAlert.

RoadID

Mominator

My mother had 7 nodes removed during lumpectomy/SLN surgery. All those nodes were completely encased in cancer cells or replaced by cancer cells. Doctors went back for another surgery and removed another 15 or more nodes. She then had radiation on that breast and armpit.

No one told her about lymphedema. No compression sleeve. Her arm grew and grew. They did stop taking blood and doing BPs on that arm, but the damage was done. 

She also had vascular dementia. She wasn't going to be asking questions about LE. Surgeons and MO really need to be proactive to protect patients from LE. 

Artista964

im fortunate that my hospital has a le clinic. Before sx they measued my arm and hand to have the baseline in case. I was given a sleeve for if i go to high elevations or fly, so i knew. Bs took out 2 sn nodes and 2 axe. Micro mets in 1 sn, the rest clear so didn't pull more. He knows his stuff. With a 7 cm tumor at the 2:00 position i thought he'd pull more. It sucks that some bs and mo dont say anything about this incurable thing that may be prevented if you know how to treat the affected arm. We all also get educated 1:1 with a RN who tells us what to expect from before sx, sx, after sx and then an rn from the infusion sits with you alone and goes over the chemo info binder you are given. Very thorough. It's not a big hospital here but they are very thorough. I always recommend washington hospital in fremont for anyone in the bay area.

Egads007

Jaycee - Thanks for the link! I just might get me one of them. I also found some jewellery type on Etsy and Amazon I might be purchasing as well. Can't have enough bling! ))

Mominator - I'm sorry about your mom's experience! When I consider that even a simple follow up chat session, class or information sheet handed to patients or caregivers by MOs, BSs or ROs could have saved your mother and others such a dreadful result it makes me shake my head. It's ridiculous! I had one tiny mention of it by my RO who said he would have the LE clinic contact me. They never did. My LE is small and not much of a problem, so in my ignorance I let it go. I had no idea how serious it could get until I found these boards.

Rosabella - Glad to see you were smart enough to pursue it, unlike me. If even one of my team had said the words 'could be serious' or 'highly recommended that you go to LE clinic to prevent' I would have been there in a flash.

As I said, at least a simple pre & post treatment fact sheet listing all SE and LE risks(and more!) should be gold standard to all patients. Why in the hell should I have to find out the hard way that I'm taking or doing something that could lead to horrible consequences?? I had a great team, but I guess only in the moment. I'm shaking me head, it just doesn't make sense.

I'm so grateful nothing has happened to me so far.

runor

Egads, Oh! Oh! Oh! Your age is showing! (OUR age is showing) Welcome back ... la la la.

sas-schatzi

1996, My twins standard complaint/joke/ anger was that she had to find out about the LE clinic from her plumber.

He came to fix something and she was recovering. There was a major LE clinic at the Karmona Center in Detroit. His wife was going to it. She being a Detroit PD sargent at the time, never minced words. She took the surgeon and the MO off at the knees.

M0mmyof3

Wow!!!!!

Egads007

Sas - Providing even the most basic care information is sorely lacking and unfortunately seems to be a common trend around here, Having to find out about help for LE from a plumber takes the cake! I think the next time I'm in my MOs office I'll enquire about my plumbing issues, betcha' they have an information sheet on it LOL!

Runor - No kidding! I remember watching the very first show and falling in love with John Travolta on the spot.,,,,,,seems like that was 5 minutes ago!

Micmel

Barbarino. Atitca atitca ! I was like 5 then wow.

Korshack? That's all this brain can Muster!

Good morning lovely ladies

Egads007

Good morning Micmel!....you were 5 years old then? God I am old.

Micmel

early 1970's.... could be earlier. But I was born in 1970 and I do remember watching it and hearing it playing on the tv while I was messing up things I’m sure!Still managed to get cancer though. Wish cancer thought it was too young!! Have a nice sunny day. Everyone! I'm Out doing some errands, I already want to just go Home! Now! ~M~

SandiBeach57

Anyone heard from Bluebird -DE lately?

jaycee49

I was wondering that, too. I haven't. The last time I see her posting is on March 31. She drew a line in the sand at the end of March? Miss her.

molliefish

I wanted to stop in and maybe release some pent up emotions. Today was the celebration of life for my friend who died on 20 March. The posts are a few pages back. My husband and I went and I Iasted about 20 minutes before I got to the point where I could not manage my emotions. I left and waited outside for 3 hours. No one gets it, least of all me. I was ready to go and show my support to her husband and family. I also didn't want to be a distraction. Most of those that we know who would be there knew I am recovering from my own bc so I'm sure they understood but I want to understand my own feelings. I'm used to death, I'm a police office and I carry many deceased people around with me, and I know death is a part of life. I also have been exposed to how abrupt death can be and the lasting effects on a family. I was totally taken off guard by the sudden overwhelming sadness. Anyone have any thoughts?

molliefish

Bluebird visited her on Aptil 26. Maybe she is spending time with family and friends. I hope all is well with her.

Micmel

mollie~ I am sorry for your loss. I think deep down we all are afraid of our mortalities. It's human, I am sure they understood. We can only be so strong and Emotions find us in situations where we can't hold back. Give yourself a break. Nothing about fighting your own Bc issues are easy. I hope you can get some rest. Sending my best ~M~

Lula73

mollie-sometimes it’s just too much - the unfairness to family, unfairness to the one who fought so hard, where do they/you go from here living without that person, mixed with all the emotions you have going on with your own situation and fears. We are often so strong all the time that when the emotion catches up with us it is overwhelming and the dam breaks. Completely normal and easily understandable. If you’re worried about your friend’s family thinking you bailed on them, arrange a time to go over and talk with them 1 on 1 to express your condolences and offer support. They will understand. On your end, let go of any feelings you may have of guilt over not being able to last all 3 hours. You’re still grieving the loss of your friend.

I’ve always thought it would be so much better for the family and close friends to put off the celebrations of life for at least 6 months to allow those closest to the deceased to grieve and make their peace with the loss before having to be on display often faking strength when they’re crumbling inside.

Mominator

Mollie, I understand your overwhelming emotions. 

You and your friend were diagnosed about the same time, but different types of bc. She had a more aggressive type of bc. You weren't close, but you didn't get to visit her before she was already heavily medicated. She's leaving behind a family. You wanted to support the family, but your emotions overwhelmed you and you didn't want to be a distraction. You probably are feeling many conflicted and unresolved emotions.

My emotions are also overwhelming. My Mother died February 28, 2018. I miss her terribly. Bryan is a man at church with Down's Syndrome. He's the choir's biggest fan. I play flute and sing in the choir. Bryan calls me every Saturday evening to check which mass at which church the choir is singing (we have 2 churches and several masses each week). Although we've been at the same church, same mass for several months now, he still calls me. Bryan called me Wednesday afternoon, to ask me to play for his father's funeral on Saturday. I went to the visitation on Friday, and the choir and I sang/played for his funeral. I want to support him and his family, but all I can do is hug him and say a few words before I get choked up. I didn't think it would be appropriate to cry about my mother to his mother, who just lost her husband. 

I will probably see Bryan again this morning at church. This will be the day after he buried his father, and my first Mother's Day without my Mother. I'm already crying just writing this. How can I get through the day?

runor

Mominator. I am feeling so sad reading your post. I am so sorry that your heart is hurting today. Hugging you.

Micmel

Mominator~I am sending out hugs of support. You can only get through one moment at a time. If you've got to cry, let it out. You're only human. It's a very emotional thing to go through no matter who you are. I am also sorry for Bryan, but you’re doing the best you can.

I am very sorry for you and Mollie. Sometimes life just plain sucks outloud. I worry about loss 24 7. My heart aches for you..I am so very sorry things happen this way.

Much love~M~

molliefish

Thank you everyone. Mominator I wish you strength and love today for Your Mother's Day and for Bryan on this day. Happy Mother's Day to all. I've been ordered to stay in bed by my 16 year old. I Can only imagine what's in the works. At the memorial yesterday Sierra had a Best Mom Ever Mother's Day card for her Mom for today. I'm glad she made one.

sas-schatzi

Mominator and Mollie, So sorry for the loss of your Mother and your friend. HUgs

JKL2017

Mominator & Mollie, I'm sorry for your losses. You celebrate your lost loved ones by sharing your sadness with all of us. They will continue to live as long as you carry them in your hearts. Mom, I think it's wonderful that you reached out to Bryan in his grief. Don't underestimate the power of that simple hug.

I think it's easier sometimes to convey our feelings in writing, rather than in person. Perhaps you could write a note to the family & share a personal memory of the person they lost. It would be lovely to have something like that to read both now & years from now.

Hoping time will ease your - & their - pain.

therapygirl18

I'm glad I found a safe place to share my anger throughout my process.  I didn't expect my 2018 to start off with a breast cancer diagnosis.  I was in utter disbelief.  There is no breast cancer history in my family.  My genetic testing showed no gene mutations for breast cancer or any other type of major cancer.  So that's good news.  Also good news, that in spite of three surgeries, I am cancer free.

Even though I found out last Friday from my breast surgeon that I had clear margins after my mastectomy, I am not exactly jumping for joy, doing cartwheels in my house.  The worst thing about my process was not the surgeries themselves (doing quite nicely after my mastectomy last Monday) but dealing with the healthcare professionals. Holy s---!!   It seems like I'm just another patient in a long line of women who need medical attention at the breast cancer treatment factory.  No one truly understood what mattered to me the most - my feelings such as sadness, disbelief, anger, etc.  Their lack of empathy and compassion is what deeply pisses me the most right now. I don't consider myself to be an emotionally needy person.  I just needed someone to throw me a bone.

OMG!!!  I can't believe how bad my experience was with the surgeons and nurses.  My breast surgeon showed very little empathy and plastic surgeon showed zero empathy.  I gave feedback to my breast surgeon.  All she could say to me is "I'm sorry, I don't know when to speak or when to listen".  WTF!!  You've been doing this for 15 years and you still don't know how to emotionally connect with your patients!!  I plan to give feedback to my plastic surgeon when I see him next Monday.  He never once asked my how I was doing/feeling about my cancer even though he knew about my diagnosis and two surgeries prior to seeing him.  So what if you're the last person a women may see in the process.  Some of us are not overjoyed over the thought of having possible reconstruction.  I guess it's easier to put a new boobie in than to say how are you handling your diagnosis, how can I be helpful to you in this process.

I've had to do deal with too many nurses scheduling appointments for consultations and surgeries. The office staff seemed disorganized. Thank you ladies for adding another layer of stress to my life!! I had a nurse discuss breast implants at my first consultation appointment with the plastic surgeon.  At that time, I didn't even know if I wanted an implant nor had I spoken with the plastic surgeon yet.  This same nurse also told me that implants last a lifetime but the plastic surgeon said the silicon implant he uses lasts 20-25 years. Miss Nurse - I do not want to every see you again.  You are completely useless to me and trying too hard to help me.  I spoke with another nurse yesterday who wanted to know how I was doing.  She seemed impressed about my quick recovery.  She said to me 'you get a gold star!" Again, WTF!!  I don't want a gold star!!!  I also told her that I was still dealing with the mental and emotional part of my recovery, that my sleep hasn't been that great (hard to sleep on my back, trouble falling or staying asleep). The nurse skipped over my comment and told me that I needed to take Valium or one of the meds px by the plastic surgeon to sleep better.  Is that inappropriate or what??? 

I would recommend to all you ladies here and all patients in general that if you have not watched the move "The Doctor" (starring William Hurt as the arrogant heart surgeon), please do so.  It captured probably better than I could say here the problems with the medical profession.  This is a movie all medical students need to watch if they want to be an outstanding doctor. It's an old movie but the message is relevant and the problems still exist today.

Thank you to those ladies who read this.  Any comments or suggestions would be helpful.

jaycee49

Therapygirl, I've given up looking for compassion. I have a few nurses who are wonderful and feel lucky for that. With a few recent experiences, I feel lucky when a medical office just answers the phone. Returning a phone call, even when they PROMISE they will, is unlikely. One person on the phone yesterday gave me a whole sob story about how she was handling all phone calls herself with no help. THAT's NOT MY PROBLEM. But, yes it is. I sit and wait and try to be patient, in pain, trying to stay calm. I called this doctor at 9 AM. Call back at 2 PM. Everything goes slowly no matter how you are suffering. A faster response would make things easier but that is not happening. Ever.

Sorry, therapygirl. I just added to your rant. There are some good people working in healthcare and when you find one it is very uplifting. You can say, "oh, there you are. I knew there were a few."