IBC lounge: roll call, support and just a good place to hang out
Comments
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Amarantha, I know you're not exactly looking forward to this next rodeo, but at least there's a plan, and it's moving forward! Yahoo, huh? Hang on to that bull, girlfriend, it's going to be a wild ride!
What a shame you'll miss the upcoming trip to Montpellier and all the lovely concerts! I'm pretty sure Traveltext, Moreshoes, Lori, Valstim, and all of us, would be happy to fly on over and fill in for you. I can hum a couple of lines from La Traviata when pressed, and I bet the rest can write a line or two, so we'll be fine. What do you wear to a European opera? Lori and I are Californians and we wear tank tops and flip flops everywhere so that should be OK, I think. We've got you covered, sister. Your editor will never know the difference.
Seriously, though...we're here to support you through all of it. Prayers and gentle hugs--SB
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Gentle hugs Aeamantha. Good you will be getting the supportive medicines and hospital care. Please keep us updated as much as possible.
Val
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Amarantha-OK let's start with the obvious-CANCER SUCKS BIG TIME!!! I'm not going to give you all those stupid platitudes about "staying strong", "you got this", etc. (because that used to annoy me to no end!!!). All I can say, is know that I will be thinking of you and praying that the days ahead will be tolerable. Huge hugs headed your way from the US!!!! Please, if you are up to it, keep us posted and always know we are hear to listen!!!
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Traveltext, sbelizabeth, Valstim, Fran, thank you so much for your wonderful support. Its really wonderful to be able to come here and visit with you. I have two weeks in front of me before the onslaught starts, what should I do ?
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Amarantha, is there a way of getting your mind off your situation? Is there any project that you've been putting off that you now might start that would be a total distraction? Are you well enough to travel, even if it's just on trains to odd places where you could take some photos to post here? Could you write a story? Keep coming here and telling us stuff. Tell us about you before the cancer.
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Amarantha, Traveltext has great ideas. It just depends on how you feel right now.
If I had two weeks open before a big chemo project knocked me sideways for a short bit, I think I'd ride my bike or walk every day--gentle, short distances. I might learn to make the perfect custard. Do you like to read? You could dig into some books you've been putting off, or listen to audiobooks. Book a lovely massage right before chemo begins, so you have something to look forward to.
Whatever it is, come tell us all about it!
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Amarantha, Traveltext has great ideas. It just depends on how you feel right now.
If I had two weeks open before a big chemo project knocked me sideways for a short bit, I think I'd ride my bike or walk every day--gentle, short distances. I might learn to make the perfect custard. Do you like to read? You could dig into some books you've been putting off, or listen to audiobooks. Book a lovely massage right before chemo begins, so you have something to look forward to.
Whatever it is, come tell us all about it!
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Sending gentle hugs to Amarantha. Hoping she is getting answers and a firm plan of action. I agree sbelizabeth, Traveltext has a plethera of information and ideas. We value you greatly Traveltext.
Hello to all. Summer is in full swing here in North Carolina/USA. I've planted all of my herbs. I now plant tomatoes in pots, as the rabbits get to them in my raised bed. So there I plant lettuce with a fence around it, other herbs and some beans and carrots.
As usual, my hot peppers are the first to bud. I'll be giving them away in spades.
Val
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Ok Valstim, sbelizabeth, Traveltext, Fran, you guys are the greatest !! I don't know if it is anticipation of what is about to transpire, or the wearing off of previous wonder drugs, or the summer heat, but I'm vaguely nauseated all the time now. Crazy, right ? Val, the garden is a saviour, right ? The rabbits must be an aggravation ! We don't have any rabbits or moles in this place, just snails, but the birds get to most of them, I very rarely find anything other than an empty snail shell. On the other hand, we have had several days of constant pouring rain, and the whole garden was a bit sulky.
Wednesday I went to visit a dear friend, my "French sister", I have known her and been sort of part of her extended family for 35 years. Her mother whom I called "Maman" was a second mother to me, and her amazing historic house and farm were like a fantasy world for me, looking over a valley, her garden intense and wild, she used to farm goats. Now as a result of a stroke, or several, Maman can no longer speak or stand, it was my first time seeing her in this condition. So terribly diminished, not able to express herself and breathing as though through a net of bubbles, she turned her blue eyes on me, and stared at me the whole time I was there. Her daughters asked, do you recognise Paula ? she nodded. I could tell she was trying to say my name. Her youngest daughter who lives there and will take over the farm gave me some fresh-laid eggs, and two tomato plants and two basil plants from her greenhouse. The garden is/was her mother's religion, and I am only too proud to have plants from her magical place in my own garden. Yesterday I put in the tomatoes with the basil. I had my set-up session with the radiologists yesterday, I had forgotten how painful is the sting when they "tattoo" you with an ink mark - right in the middle between the breast it sent a sting of pain so intense it gave me an instant cramp in the muscles around my ribs. Weird. On the sides it is not painful, but I guess we have many nerves in the center. Right afterward I went out and spent more money on flowers, to put in pots and to plant. When I got back my husband had painted some wooden boxes in red and blue and white, to make different levels to put the pots on. There is not much space left for new things now, but full of hope, later that day I bought six cosmos flowers to plant and a delphinium. As my husband says, 'it's our only pleasure' - not quite true, because we have many pleasures, but it is a great pleasure.
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Hello everyone! Even if I am new here, I know all of you so well because I've been reading your posts and replies for days. I feel your pain, and knowing that each one of you have gone through what I am going through, and have lived what I am about to begin, makes me see the light after the tunnel!
I was diagnosed with IDC last Monday. Gratefully, I was able to see my Oncologist yesterday. At first I was confused and disappointed that I did not see a BS first, but now I understand how my journey is unfolding. My diagnosis came after a breast tissue biopsy, when the Oncologist examined me yesterday, he knew immediately this was IBC. By the look of my breast, the density, the skin texture, redness and how swollen my right breast is, he diagnosed me. He immediately did a skin biopsy, and waiting for results.
I start chemo next week, possible Tuesday. Note, a month ago I had no idea of any of this, and my life was normal. Just the visible changes on my right breast. Now, I have some shooting pains, and feel very tired. The chemo, which I am not sure what is going to be, pending the pathology reports, will be once every 2 weeks, for 2 months, a total of 4 chemo treatments. Followed by 4 months, once a week, chemo treatment. I will be wearing a port. After the 6 months of chemo treatment, I will be going through surgery, and radiation after.
I have no idea of the type of chemo. I questioned my doctor yesterday for the possibility of a mastectomy, he said "no way". I read here that at this stage, a mastectomy is not the fist choice, but chemo is.
I have many questions, very afraid of what's coming up.. I have a very strong Faith, and I am not alone. I have a 7yr old daughter, and she keeps me very busy. I am a single mother, but have a pretty strong support. Reading your posts, and knowing that others go through the same, and even more, gives me hope. I pray that all of us find the cure, but I am also grateful that one way or another, we have a solution. Day by Day.
I forgot to mention, I work FT, desk job. Everyone at work has been very supportive, and they are with me 100%. That is also a relief.
God bless y'all; and please ask me anything, or simply share your story..
Thank you,
ICM
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Hi Bobby, I'm so sorry that you have to go through this, but since you do, I'm glad you're with us. Yes, a mastectomy would be counterproductive at this point; they have to "cool" the cancer down first before they can cut without making things worse. I'm in the same posture, going through all this chemo and stuff in order to get to where it will be safe to cut (and this is my second go-round, first time was the left breast, now it's the right). Indeed there is hope, much more hope that it seems when the bad news comes down. So many new discoveries are being made, even since I was first diagnosed end 2013. So yes, keep your faith strong ! and enjoy every moment.
(I just made all past treatment "private" only because the signature lines were taking up half the page and I was feeling like a hog. Basically I've had pretty much everything at least once)
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Thank you, Amarantha! We'll stay strong.. Big hugs to you...
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Welcome Bobby. You'll get lots of advice here as your treatment progresses. It will help us if you can post your full diagnosis here when you get it. And the treatment details as you receive them. Certainly kicking off with chemo is the way to go and I'd suggest you'll have a good response to this because you have been diagnosed early and your onc sounds right on the ball. Breast cancer has so many variations and even within IBC there are differences. It's great that you gave read the posts in this thread, since you'll understand how we try to support each other. Come back as often as you wish and good luck with your treatment.
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"Basically I've had pretty much everything at least once."
Amarantha, that's an appropriate new signature for you. 😀
How goes the waiting game?
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Thank you!
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Amarantha, those red, white and blue flower boxes will be looking good around July 14!
Loved your story about the visit to your French "sister" and "mother". What lovely people and what an amazing house and garden they have. There's nothing like farm fresh produce! Unfortunately, strokes can be debilitating as Val and I certainly understand. While there's many more chemicals with cancer, they seem to keep us going. But. I'm worried about your nausea and can't wait for you to get the chemo happening. Going through the rads setup wouldn't have helped. If you need it, don't hesitate to go to the ER.
I love your impetuous gardening style and, yes, gardening is a great joy.
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Hi, Bobby, and welcome. I'm sorry you're here because of breast cancer, but glad you found us! There are some smart, wonderful men and women here who have been around the block with IBC and understand the challenges. Please join our conversation anytime for support, answers, opinions, or just to have a place to vent. SB
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Hi Bobby, so sorry you landed here but welcome to this is a great group of supportive IBC people. I'm glad that your doctor was able to recognize IBC before they started down the wrong path!
Lori
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Well, I've just got some good news. Just heard that I've been granted a scholarship to participate in the week-long Project LEAD Institute course starting 22 July in La Jolla, CA.
This is an excellent opportunity to learn more about our crappy disease and be at the cutting edge of male breast cancer activism. But we also get talks by medical professionals and I want to try and find out more about the latest treatments for IBC. Obviously I'll post stuff here.
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Hello Bobby-while I know this was not the type of "group" you ever wanted to become a part of, I am glad you did find us. While some of your questions/concerns may seem silly, stupid or trivial to you-please feel free to reach out to us. Each one of us has been there and will let you know our experiences with side effects, treatments and just stuff that "gets in the way" when you are tackling this disease. After my third reoccurrence, I was feeling very isolated and confused-how the hell does this keep happening?? Why me??? etc. It was so wonderful to have a place where others would understand, express true empathy (but never pity) and were totally accepting (not to mention SO HELPFUL). It helped me realize what a big place this world ibut you are never truly alone.
Traveltext- Way to go!!! So awesome to hear your news! Hope you get to visit a bit in CA while you are there. It's a beautiful place!!!
Yesterday, I celebrated my 52nd birthday. A year and a half ago, I wasn't even sure if it would be possible given the craziness and progression of this disease. I am truly blessed to have such wonderful co-workers, friends and a very loving family. Over the course of the weekend, I was able to enjoy some of my favorites like chicken fajitas, cake, lobster and ice cream (not to mention a bit of margaritas and wine
! Most of all, I laughed and enjoyed time with the ones I love and cherish! I'm so ready for my school year to be over and I can officially start my summer-13 school days left-God give me the strength LOL! Wishing everyone a good week ahead!0 -
Fran, Happy Birthday! And hearing that rock 'n roll song "SCHOOL'S OUT FOR THE SUMMER!"
Traveltext, way to go! La Jolla is a fancy-schmancy place, even for California. It will be beautiful in July--not too hot yet, and it's right on the ocean. I'm looking forward to learning from your experience there. I can't think of a better representative for us.
Amarantha, how you doing today? SB
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Happy Birthday Fran!
Traveltext you are going to love La Jolla. I live just a bit north of there, but wouldn't you know I'll be away on a vacation (and halfway across the country) that same week. If you have time for some sightseeing, La Jolla Cove and Torrey Pines State Reserve are both worth a visit, I go often. If you have any questions about things in the area, please don't hesitate to ask.
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Fran, your birthday celebrations resonated with me proved that life has many pleasures despite our problems. Happy Birthday.
LoriCA, what a pity our dates don't coincide, but I'll certainly enjoy my stay. Some other bc colleagues will be around, so we're all meeting up.
Sbelizabeth, I'll do my best to gather info. Likely I'll post here as the days go by. They only invite about 50 people and I don't expect there'll be any other guys. Sounds like a bco gig to me!
Amarantha, yes, how goes things?
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Traveltext and Sbelizabeth, thanks so much for asking how I'm doing. Sigh, I've been doing so well all this time, but now still feel constantly somewhat nauseated, and haven't even begun treatment, I can't believe I have to wait another week until treatment begins, the infiltration on chest and breasts is just getting gradually worse... if I go off line, I'm just coping as best I can. We planted many more flowers in the garden yesterday. Had a good laugh by pulling both ears perpendicular to my head ; along with my round head and its new fuzz growing, which I say is like "duck fur" the impression is very much like a monkey, -- . I say to husband, if anyone thinks they have it bad, I can show them a picture like this (with both ears perpendicular to head) and say - hey, cheer up, buddy, it could be worse, you could look like THIS. Almost died laughing. But both of us are out of sorts, he has gout in one foot and is miserable ! But we can still laugh (sort of) LOL.
Happy Birthday to Fran !
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Welcome Bobby. Vent, ask, cry we have a lot of shoulders. So sorry you had to join, but glad you found us.
Congrats Traveltext
. Please keep us posted. I can't think of anyone who deserves this more, despite this horrid disease you have so much to offer and share. Amarantha, you are constantly in my thoughts. Virtually holding your hand. the waiting is almost as bad as having treatment.
Fran, I felt the same way almost 3 years ago, that I would not make it even 6 months. My IBC was growing and spreading so fast, even my MO was skeptical that chemo would reach it in time to make a difference. Ofcourse she shared this with me after I reached a year post DX..
selizabeth, LoriCa and all others who may lurk or occassionally post, know I would have been lost without this thread. No one gets IBC unless you have it.
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Thank you everyone for the warm welcome! It is very nice to meet you and hear your stories. I am not alone, there are others that are suffering as much as I am, and even more.
Amarantha, I am thinking of you.. and hope this wait is over.
I changed gears, my initial plan was to start chemo asap, tomorrow, with my oncologist. After I was diagnosed with IBC last Thursday, I decided to give MD Anderson a try, and prayed for an appointment. I was able to speak with a great breast oncologist and he is seeing me on Wednesday. It's better to stay with a breast specialist and somewhere like MD Anderson, than continue seeing the regular oncologist. Don't take me wrong, he is amazing, but I rather stay with the center that specializes in IBC. My family is giving me the "guilty trip" because the oncologist is a family friend and my mom's doctor; which is eating me inside just the thought of me saying "sorry, I have a new doctor". But, my health is first, and MD Anderson has the most advanced research and technology for this horrible disease.
I am feeling really sick, tired, nausea, weak, bone pain, and I wonder if it is just that I am scared and waiting for chemo, or if it has something to do with the disease.
Anyone there that can tell me that I will survive?? I feel like this disease is spreading like crazy. Thank you so much everyone..
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Bobby, I know you're in a dark and frightening corner right now. I predict you'll feel a bit better when a treatment plan is in place and it all stops feel so nebulous, and so much like a free fall into disaster. I know I did. The best way to manage "the shivers" -- what my husband called it when I felt overwhelmed with fear and sadness--is to concentrate on taking things one day at a time. Just keep putting one foot in front of the other. Wake up in the morning, make coffee, and face that day. Just that day.
Early in my treatment, I stumbled across "Five Rules of Contentment" -- which I've had pinned to my office bulletin board ever since.
1. Allow yourself to complain of nothing – not even the weather.
2. Never picture yourself to yourself – under any circumstances in which you are not.
3. Never compare your own lot with that of another.
4. Never allow yourself to dwell on the wish that this or that had been, or were, otherwise that is was, or is. God Almighty loves you better and more wisely than you do yourself.
5. Never dwell on the morrow. Remember that it is God's, not yours. The heaviest part of sorrow is often to look forward to it. The Lord will provide.
You're here with us, which is a safe, warm place. Gentle hugs. SB
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Amarantha, loved your monkey joke. What a look. It's okay to stay offline, we'll understand you feel crappy until chemo starts. And maybe after that! But promise us that you'll go to Emergency if things get worse.
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Nicely said Sbelizabet
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I wish I could be more comfort to others, but my head hasn't been in the right place for a few weeks. If I seem short or uncaring, please understand that I just have a lot on my mind right now. I wrote a few paragraphs the other day and ended up deleting it all. Saving it for another day.
Bobby we all understand the fear, and It will take some time before you settle in to your new life, but you will. After the first chemo session when you feel it kicking cancer's butt you'll start to get your feet under you again and will be able to focus on healing. What helped me get through the toughest days was consciously practicing daily gratitude. Pick one thing each day that you are grateful for - the sound of birdsong at sunrise, the way a warm gentle breeze feels blowing across your face, ice cream, an expected note from a caring friend, how strong my husband stayed through everything...
amarantha, gentle hugs to you!
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