IBC lounge: roll call, support and just a good place to hang out
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Saulius I'm glad to hear that she is healing well. When will she be able to come home?
I'm doing okay, no major problems just not feeling as well as I would like to, not sure if it's just treatment fatigue. Had brain scan last week to see if that's what is causing these constant headaches. It was clear. I think maybe I'm just tired of being me - between the tumor pain, numbness in my hand, burning feet, constant cramps and intercostal spasms, and the headaches...it's all just wearing on me. I should just be happier that my problems aren't worse.
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Jess, I heard privately from Kicks a few weeks ago and she said she is doing well
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Great to hear from you Jess. Thanks MelissaDallas for updating Kicks. Meadow was last seen here this time celebrating for fifth anniversary.
ValsTim, great to hear from you too, and your remembrance of PM says heaps for her.
Lori, my good pal from Twitter, you really are going through drastic treatment. Sure it could be worse, but I really hope things settle down.
Best wishes to everyone else here.
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TT I like Twitter because I can take my phone outside, relax and get some fresh air while I'm forced to keep my posts brief haha!! I guess I'm not always in the mood to sit down at a computer.
For the others, here's the story from my brain MRI that TT already knows about (although the Twitter version was only 280 characters haha!!)- My oncology nurse made sure to submit the form requesting someone to access my port because my veins are shot. She also offered to leave the line in "just in case" since my infusion was Monday and scan was Tuesday, but I was afraid I'd rip it out overnight because I'm a restless sleeper. When I checked in for the MRI I made sure they were aware that we'd need someone to access my port (for the past year and half I end up with bruises and blown veins from my elbow to my fingers every single time someone tries to access a vein). The tech waved the form in my face "You mean this? We won't need it because we use a very tiny butterfly needle and I'm very good at accessing veins." I warned him that my veins were shot from chemo and Herceptin, he paid no attention. Unlike every other scan where they set up an IV line before the scan starts, he intended to inject the contrast directly into my vein.
If you've never had a brain MRI before, they put a cage/mask (called a coil) over your face before rolling you into the tube. I don't have a problem being in the MRI tube, but the mask over my face bumps up the claustrophobia to another level. Fifteen minutes to do the first set of scans, then he rolls me out to inject the contrast. I warn him that we've had the best luck on the back of my hand, but he doesn't listen,Tourniquet on, he taps around for a bit before sticking the needle in close to my elbow, and then he has to wiggle it around because he's not hitting the vein (ouch!). Finally gives up on that one (just in time, I told him it felt like the needle was going to come through the opposite side), moves the tourniquet down, tries further down on my arm, still no luck. This goes on for 15 minutes while I'm trying to crack jokes because I'm getting so stressed over the pain and I've been cautioned that I absolutely must not move my head, and I'm still wearing the mask, ear plugs and headphones and feel like I'm being tortured. What I really wanted to do was scream at the top of my lungs to get the gd mask off my face! He finally gives up and leaves to call a nurse to access my port, but decides to poke around some more before the nurse arrives. Another 10 minutes or so of moving the tourniquet and poking around, moving tourniquet and poking around, still wearing the despised mask over my face and not being able to move while waiting for the nurse, he moves to my hand. He comments that my skin (or maybe my hand?) there is thin and doesn't it hurt, and I reply that it does hurt but it's been our only option. He finally gets a vein in my hand just as the nurse walks in. He has to slow-walk the injection because the vein is so tiny, then he rolls me back in for the next set of scans. My MRI went 30 minutes longer than scheduled.
Never again my friends. I don't care how mean I have to be about it, I will never again allow myself to be put through that experience. If they refuse to have a nurse to access my port, I will insist that they at least set up an IV line BEFORE they put that d*mn mask over my face.
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Holy moly Lori, that’s a story that needs wider circulation. What a trial. I like your plan for the future.Would you like me to copy and paste it to a back page of www.pinktobersucks.com and send you the link to share with your twitter pals?
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Lori...I'm so sorry you had to endure this COMPLETELY unnecessary torture.
You have every right to speak up and refuse to allow anybody to fish around for a vein, I don't care how "good at accessing veins" they are. Yes, I understand it's a pain in the patootie for them to find a nurse who can access your port, but that's just tough. Find the nurse and get his/her butt down here.
Just my humble opinion, but if you allow them to try for an IV before they put the coil over your face, you'll probably still be in for the "I'm good at this" stab--stab--stab-- "oh, darn, I missed"--treatment. You'll just be able to see it better.
If there is a next time, get your doctor to submit the form, same as before, and then call ahead the day before to be sure they know there's no vein fishing allowed. And then call the morning of, as well, to reinforce the expectation that a qualified nurse access your port. If they try to blow you off, demand to speak to a manager. All this can be done in a gentle, non-confrontational, but "I know what I'm talking about and I mean business" tone.
Can you tell I'm pissed about this? Gimme their number, I'll call them myself. SB
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TT you are welcome to copy and share the story anywhere. I had a good response to the shorter version on Twitter but I agree that it should be shared more widely, ideally in the medical community. What I would really like to do is somehow get it to an audience of imaging techs and tell them that when a metastatic patient's doctor informs them that someone is needed to access the port because the veins are shot from chemo, this is why!!
I have posted photos of my arm and hand covered with bruises and bandages from blown veins on Twitter in the past. I'm used to it, it's part of my life now and has been for the past 18 months. Unless a scan is done in a hospital there won't be anyone qualified to access a port, and two of my scans (PET and breast MRI) are done in hospital-affiliated imaging center, so I'm used to being patient while they try to find a usable vein. At my last PET it was so bad that I joked that we'd have to try my leg next (and they told me they aren't allowed to do that either). I should probably have those scans done in a hospital now, but I like having same tech read my PET scan every time.
But my brain MRI was done in a hospital so there was no excuse. Expecting me to go through that with a mask over my face while remaining immobile is beyond cruel.
SB my scan was scheduled in less than 24 hours (ordered STAT). Now that I know what to expect from a brain MRI, I will know how to handle things. But I will not return to that hospital for a scan again (was my hospital but in a different city because they could fit me in faster).
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Lori, here's your story: http://pinktobersucks.com/how-not-to-do-an-mri-bra...
If you want to make alteration to the title or text, just let me know. Some pics would be good.
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Uh Lori, what an experience. Sorry about this... my wife is already home (today!) and feeling well, can move her hand already (they convinced us not to take lymph nodes out because they are "first barrier for C" if there are some circulating tumor cells, and lymph nodes were clear for past 18 months, so it was a smart advice). We still wait for pathology report, and we hope we continue to heal. Hugs to everyone and I'll keep you informed, Saulius
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Lori I am horrified by your story. So terribly sorry you had to go through this. Not something anyone should have to suffer through !!
I'm trying to regain strength after my two month stint in the hospital. I don't understand why my body is so week, the cancer, or the hospital stint, the ongoing chemo, or something else but I don't believe my body is going to get better by itself. I try to take little tiny walks that wear me out, then start up again when strength returns. At least I am not in pain ! This is growly growling time for me.
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Amarantha, how wonderful to see your post--it's like a short visit from a good friend. I'm sorry you're so fatigued and limp, though. Keep up the tiny little walks, eat healthy food, sleep... And growl anytime you need to; that can be therapeutic too. SB
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Lori, if you have the strength and motivation to do it, a letter to the hospital administrator is in order here. Hospitals depend a lot on patient satisfaction these days, and an actual letter describing your wretched experience, sent to the hospital administrator through snail-mail, will get their attention. Trust me. The letter will filter from admin to the manager of the department and changes will be addressed.
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On another note, I would love to hear some success stories about Gezmar.
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Good to see you here amarantha! Your body and mind have been through a lot, don't be hard on yourself. I think you will get more feedback on Gemzar in the Stage IV forum, I don't think it is used much for early stage. Here the Gemzar thread - https://community.breastcancer.org/forum/8/topics/869237
Thanks TT, I am looking for photos but I think I may have deleted most of them when I was purging photos from my phone. All I can find so far is one of a bruise on my hand and one with bandages on my hand and arm. I'm trying to find the one that shows bruising from my elbow to my wrist. My bruises from last week are already fading so no sense taking a photo.
That's a good idea SB.
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Hi Everyone, I just read the last few weeks of posts to catch up. I am sending big hugs and positive thoughts to all of you with pain, fatigue and suffering. I'm not good at writing how I feel, so my words seem insufficient. But my heart is filled with love for all of you.
I didn't know PurpleMinion, but I was 46 and TN IBC Stage IIIB just like her. I am currently NED - just passed my two year mark. Her story hits me. As does all of your's and what you are going through.
TT- I love the pinktobersucks.com site. So true. Lori - what is your Twitter handle? And is there a Facebook page for IBC?
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Hi Michelle, it always makes me happy to hear of another who is NED. I hope all of you stay NED forever and never have to experience what Amarantha, I and a few others are going through. Being Stage IV is bad enough, but Stage IV IBC goes to a whole new level of fun.
I will message you my Twitter handle. I've enjoyed having some degree of anonymity here so I can feel free to post honestly about some of my symptoms (nobody wants to publicly admit to a fungating tumor), although I may have just ruined that anyway. Since I've been on Twitter almost since the beginning, I didn't set up a new account just for posting about breast cancer like so many do, it's the real me - and was actually used for business purposes until my Dx threw things off track. But I am happy to message my handle to anyone on this thread and would love to connect there.
I'm no help with a Facebook page for IBC. I did find and join one but it was mostly people thinking they had IBC, not people who were actually diagnosed with it. The Twitter breast cancer community is fantastic and an amazing source of support and resources, I highly recommend it! There has been an increasing level of participation from the medical community and some great dialogue.
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Thanks Lori, I got your message. You are such an inspiration, keeping it real.
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Thanks for the follow Michele, followed back.
Hehe, nothing inspiring about it. I need a place to vent about the realities of this d*mn disease sometimes, while still keeping up a strong face in front of my friends, family, and clients...as much as possible. The people on this thread have helped me through some very tough times. They are the inspiring ones.
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Amarantha, best wishes during this “growing growling” time. You are incredible.
Michelemk, welcome to the Lounge. It’s been hectic here lately and we could certainly use some more energy. There are a few FB pages foe IBC, search for IBC Network Foundation.
Lori, your dreadful MRI story is getting a good airing on Twitter. If you want to add to it (text or images) just let me know. And don’t pretend you’re not an inspiration :-) I get the double life you lead with your cancer narrative. No point in frightening family and friends, but you can let rip here and on Twitter. So cathartic!
SBE, so true, it’s vital to give hospital admins that feedback. Are you still on hormone therapy, or have you stopped?
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TT, I'm still on letrozole. This month makes seven years. I just had a bone density scan and my lumbar spine and right hip are OK but the left hip is "borderline" osteopenic. I'll do what I need to do to stay on it for at least ten years, though. I was almost 100% ER-positive, and for me, this drug is a bigger gun than chemo. How are you doing on tamoxifen?
Michelemk, good to see you again!
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TT I was mostly worried about clients knowing how bad things were, because many of them follow me on my social media accounts. I post more honestly here than I do on Twitter, usually when I'm really sick I don't post on social media at all. I thought I would be able to get back to freelancing and I didn't want clients to be afraid to hire me (which is a big reason why I haven't posted on Facebook since last fall, most of my clients are there), but that is starting to look like a pipe dream now after missing prime season two years in a row. My timing has really sucked these past two years, and it's hard to get back in the game after being out that long. And bleh, sometimes I get overloaded with all of the cancer on Twitter.
Anyway, I know I should re-write that entire story so it has full sentences (jeez, I actually get paid to write, I really can do better haha!!) instead of the quick blurb I posted here, just haven't found time yet. I'm struggling just to keep up with every day things and falling far behind.
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SBE, okay, so tolerating the letrozole but with SEs. That's not bad. Since you're so ER-positive, would you consider tamoxifen following letrozole? Especially since you are looking for "big guns". As am I, and I'm now coming up five years on tamoxifen. SEs are not bad, if at all, except, and a big except, that it may have been a contributing factor for my blood clot stroke 18 months ago. Honestly, I'm more worried about the debilitating effects of a bad stroke, than my cancer right now. My cardiologist says go off the tamoxifen, my onc says stay on it. Since I've got some good anti stroke drugs that are working g well, I'm happy for now.
Lori, I entirely get your work situation vis a vis social media. I was lucky to be winding down my publishing business when bc came along, so being out of the game was not a big deal. And I was financially okay. You must have a lot of photographic stock material, and text, you could sell. I know it's not always what they want, but it's something. As to rewriting the MRI story, I'll give it an edit for now. You do so often prioritise social media, I can see that, and I can get that, since it's such a supportive space and it's better than banging on to partners, friends and relatives about the disease. Their eyes do glaze over for after a while, and fair enough, too. However you must learn to claim your fair share of me time.
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Social media actually gets little of my time TT, I just know how to make it look like more.
I spend some time while drinking my coffee outside in the morning so I can check in with RL friends, but after that it's only a minute or two here and there while taking a break from trying to do something productive, or sometimes I check in while I am cooking. I do try to be diligent about responding to comments on my posts though because it's the polite thing to do and I was raised well haha! So if I'm getting a lot of comments or involved in a conversation you'll see me on more often, but I've been known to take extended breaks for days or weeks at time (although then people panic and start texting my phone to make sure I'm okay). Yes I've been licensing some photos and selling some prints on my website, things that don't take real mental effort from me, but it's no replacement for the income I was earning. My writing was always specific assignments for a client, so nothing there that is ready to sell. I usually did a lot of research, not just write off the top of my head, and these days it's hard for me to sit down and focus for an entire day. Doesn't help that my niche required me to spend a lot of time off the grid in remote locations. And I'm on the board of directors for a non-profit, and I haven't given that up yet, so that takes a chunk of my time and brain power and has been my priority when I'm up to doing something that requires actual thinking. If I was smart I would drop the volunteer work so I can focus on myself but I have one thing left that I want to accomplish for them before I go.
I've averaged 2+ medical appointments per week so far in 2019 (67 medical appoints in 32 weeks!), and infusion days are 4-5 hours long. Then the infusion knocks me off base for a couple days, so I can practically cross that week off. I used to feel better by week two, but lately I haven't been. I thought I would feel better after finishing rads, but I actually feel worse. If my brain scan had shown mets at least I'd have something to blame it on, but I don't know what is going on and why I feel so absolutely horrible. I'll actually start to do something, and an hour later I'll realize that I've just been staring into space the entire time.
I don't have family nearby,both of our families are on the opposite coast. I have family in Ireland too (some intend to visit me next week and I'm not nearly ready for that!). My husband works 10 hours a day, 6 days a week because he's self-employed, so I'm pretty much on my own most of the time, trying to figure out how to take care of a big house and get things done when all I want to do is sleep.
I absolutely hate the way I've been feeling lately, this past year has done a number on me. I don't have the energy or motivation for anything, I don't think my brain works anymore, and it's so frustrating because that's not who I really am.
But all of my venting aside TT, please don't worry about rewriting it. I will do it this weekend, Saturday morning will be quiet with my husband working. It's my story, it needs to be my voice, and it needs to be better than a copy/paste of quickie forum post since people are actually reading it.0 -
I'm struggling to regain strength for walking and standing upright after my two months in the hospital. I did not have much encouragement from the doctor on this score, she looked to think I was asking too much when only a two months ago i was (what ? a larvae ? no one will tell me) I can walk but not with pleasure and am out of breath after one block. My thought is to regain little by little even if just ten meters a day; and why not use pain klllers to help get there since they give me so much. The doctors look away and seem like they want to eat their beards when I ask if any improvement is possible. i want to feel there is something i can work for. And I still don't really understand what happened to my on May 2, that was the day it all started. Well we are August 3 now. Strong pain in my back when I try to walk a a ways - but I guess that is from the cancerous lesions in my back. Chemo should help, or not ? I just want something positive, anything to hold onto.
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amarantha, it is not fair that you are being denied information about your treatment and your prognosis. I would advise having a friend attend all meeting with your medical team to ask questions on your behalf and take notes. Better still, ask your hospital for the help of a nurse navigator.
I’m confused from your posts about where you are right now, at home or in hospital? Are you in a palliative care program? I can’t believe you aren’t being given pain meds. It’s obvious that you have spinal tumors and this would make walking a chore, but you need to be seen by an exercise physiotherapist to plan a program for your physical rehabilitation. Spine mets are usually treated with radiation, so you might ask your team if this would be an option for you. Wishing you all the best.
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HI TT, sorry no to be clear. I am at home with lot of visiting nurses and aides coming to help me, and being given all the pain meds I need, but have chemo in the hospital once every 15 days. I just had my chemo day, so had a visit with the doctor. You are right, an exercise physiotherapist is what I would like to see. I do not know why they chose against spine rads, perhaps fear of making things worse. I think the primary goal was to stabilise me. I am wondering it it is a legitimate use of pain meds to volontarily put myself through pain (exercise) with the help of the pain meds (the extra pain meds that are optional, that they give me to use in between doses. 'interdoses' they are called.
I need something to hope for and something to work towards.
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I'm sorry you are going through such a difficult time Amarantha. I hope your doctors give you something to strive for. Sending you much love.
I can't say that this is reason, but radiation is typically used when there is only one or two smaller bone mets causing pain. If mets are more extensive, systemic treatment (chemo) is more common. Radiation can also sometimes weaken bone, so it may depend on if lesions are lytic or blastic, and how much the bone has already been weakened.
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amaranth: ((hugs))... I didn’t have Gemzar, it was one of the choices given to me by the IBC specialist, it’s a big gun. I just wonder the added pain might be caused by Gemzar. Do whatever make you feel comfortable and peaceful, put on some good music, do a minute of standing & breathing, one small step at a time, imagining Gemzar, the big gun, is blasting away the cancer cells.
LoriCA: from your writing, your brain works pretty well to me;-). I have really ‘shy’ veins, have gone thru more than a few what I call ‘got pricked by pricks’ instances. What
you have gone thru was outrageous!!! You are such a lady, I would have screamed and told him to stop immediately.0 -
TT thanks for posting about Purple Minion. I think often of her. It's already three years?
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Checking in!
MO is concerned about the way my symptoms have been developing. He's starting to think that the steadily increasing lymph node metabolic activity throughout my body that I've had on the past few scans isn't my body fighting the cancer as he was hoping, but the newest way the cancer has been spreading and causing some of my symptoms. Instead of new scans and a probable treatment change right now, we decided to increase/add to my meds this week to see if my symptoms can be better controlled to buy me more time. If I'm still this miserable in 3 weeks, we're off to the races again. And we're scheduling me for an updated echocardiogram since that was forgotten with all of the on/off/on/off Herceptin I've done over the past year. It will help determine what my next treatment line will be since I won't be able to do Kadcyla if my LVEF has dropped too far.
Amarantha how are doing with Gemzar?
Leslie "pricked by pricks" made me laugh, that's the perfect description and now I'm going to think of you every time it happens!
Hope everyone is doing well and enjoying the last few weeks of summer!
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