IBC lounge: roll call, support and just a good place to hang out
Comments
-
Same here Bride.
Hello to all, hey Hydranne!. I'm ok. Had a hospital stay due to my neuropathy flare. I'm 10/33 rads. Skin holding up, looking forward to the end of treatment.
0 -
Thank you Moreshoes!
Lindsey, Welcome, I have notbeen checking in, and I want to tell you I think it is just rotten that you have to deal with this at such a young age. But you can beat this, do not despair.
Purple, sorry to read you have been struggling. Did all triple negs see that there have been some signficant breakthroughs in target therapies recently? Purple, I thought of you immediately. One new drug, IMMU-132, is showing marked success on TNBC patients who previously did not respond as well to chemo. Have you read about this?
Bride, as alsways so glad to hear from you. I agree, your essays sound very interesting.
Travel, Hydranne (((hugs))) hugs to you both
Shycat and Milwmama, Yes! good news abounds!
Val, like Purple and myself, good news about the new targeted therapy on the horizon for triple neg cancer.
Hugs to all!
0 -
Hi all. Since ending chemo I've been busy living before surgery knocks me,down again. Got shingles as parting shot from chemo. Ugh. Still tired but trying to not let it stop me.
Next up Surgery on Aug 4. Double mastectomy and ovary/tubes removed.
Hope everyone is enjoying the Summer. Make sure you get some vitamin D
0 -
wishing you the best on your surgery milwamama. Wishing all a good weekend. I'm on #16/33 rads. they stopped the bolus so it goes quicker. Skin is starting to heat up.
0 -
Milwmama. Shingles, yuk. Glad the chemo is over, though. When is surgery?
Halfway through rads and the end of treatment, hooray Val.
0 -
To all those going through treatment - I wish you massive success and minimal side effects. It seems such a long time to go through this - I remember feeling that this was my new normal - but time will pass.
Take care of yourself and do what YOU feel best - accept all offers for help that YOU are comfortable with. This is the time where you are the most important one. My treatment 9 months was a time spent with some lovely family and friends who came for a week at a time form the Uk to keep me and my family going.
Hugs
Sarah
0 -
TT-surgery Aug 4, just enough time for a visit to Florida
0 -
Gentle waves to all. Here is hoping we all are able to stay cool.
Val
0 -
Hi everyone, it's been awhile. I hope everyone is doing okay.
I don't know how to tell you guys this and lost for words. So, I've copied and pasted what PurpleMinion's husband posted on FB. She was so uplifting and encouraging. Everyone on the FB IBC Terry Arnold site is devasted by the news. 😢
July 17, 2016 9:45am
It is with a very heavy heart that I must tell you that Julie passed away earlier this morning. She had gone to the ER again on Friday with extreme shortness of breath and rapid heart rate and was admitted to the hospital. She went from a normal room, to the Acute Care unit and eventually to the ICU, all along with more and more labored breathing and a weaker pulse. The ICU team did their best, as did Julie, but it was eventually too much for her.
I'm sorry if there are some of you who I should have called directly instead of posting here, but it's all a little hard to handle right now.
:-(
0 -
Oh Geeper, thank you very much for posting this. I was so hoping and praying for her to make it but it wasn't meant to be. She was so young.
0 -
That's devastating news Geeper, thanks for posting here amongst her closest BCO friends. Despite being triple neg and IBC, with widespread mets, Julie never stopped supporting the IBC crowd, lately under the name PurpleMinion, but previously, as many will recall, as Mamiya and Notdoneyet. Julie started this thread in April this year to replace the "This ain't Facebook" IBC thread that disappeared when Bon left.
PurpleMinion will be sorely missed here, but I can only imagine how those who knew and loved the real Julie are feeling right now.
0 -
Oh Geeper, so sorry to hear this. I remember her wonderful post under the other names mentioned by traveltext, and despite her outlook being grim she was so supportive of everyone.
Our heart and prayers are with her friends and family.
Val
0 -
MoreShoes, I did not know how to deliver the news, but I do know that she would want you all to know. She loved this group so much! We were all rooting for her. She was diagnosed in June 2015. She leaves behind her beloved husband and 16 year old daughter. She wanted to see her graduate from high school. This was totally unexpected. She had been in and out of the hospital this month for fevers, shortness of breath and rapid heartbeat. We don't know what caused this. So many unanswered questions. I know to well about life being so fragile and precious. My beloved husband (my cheerleader, soulmate, and caretaker) was diagnosed 05/18/16 with stage IV lung cancer and passed away peacefully in his sleep on 06/12/16. Less than a month after diagnosis. Still trying to find answers and remaining strong for my kids. Just feeling numb right now. Too much devasting news.
0 -
Traveltext, yes PurpleMinion (Julie) will be sorely missed. Her and Bonnie were the 1st to reach out to me when I became a member of BCO community. Julie was so full of life and brought awareness to IBC. She was so knowledgeable and provided great input. She wanted to achieve NED status and wanted to live. She was being treated at Northwestern at Chicago with one of the best IBC specialist in the world, Dr.C. May she rest in peace.
0 -
Hi Valstim, yes she was so supportive of everyone. She is going to be missed. I loved her kind spirit. I feel bad for her family. You feel numb, in a fog, and bad for your kids. Your kids hurt so much and you wish you could make it better. My husband passed away 06/12/16 and this takes a toll on you mentally and physically. My son in 15 close to Julie's daughter's age. Julie's daughter was so close to her and my son close to my husband. You wish you could take their pain away. My heart breaks when you see both your kids cry. They have anxiety and nightmares. So, I kinda know what her family may be going through right now. It's upsetting.
You cherish their wonderful memories and live life to the fullest.
0 -
My heart is so sad. I hope death came to Julie, as hope it will come for all of us, like a tired doe laying her head into loving hands.
0 -
Oh Geeper I'm at a loss for words on your loss of your husband. Know that I hold you dear in my thoughts and your family along with Julie's.
Val
0 -
Geeper,
I, too, mourn Julie's death. If you can, please pass on my condolences to her family.
Johannah
0 -
Sorry I haven't posted in a while -- one of my best friends was just DXed with stage IV ovarian cancer. Sometimes I think I have an aura of illness about me that is contagious. Sigh.
I'll be posting my essays on a website I'm setting up. As soon as it's up, I'll post a link.
You all are in my thoughts.
bride
0 -
sbelizabeth, "The Life of Death" is beautiful.
Valstim, thank you!
Hydranne, thank you! You are right about Julie, she was compassionate and full of life.
Bride, I'll pass your condolences to her family. Please don't think you have an aura of illness that is contagious. It seems like now in days everyone is getting cancer. I don't know what is going on, but I've had several of my friends recently get diagnosed with cancer.
Sending you all hugs.
0 -
Geeper, I'm so sorry for your loss. It's all too much.
0 -
Geeper, I'm very sorry for you having lost your husband and for your son having lost his dad. Yes, cancer is everywhere bride, but most of us will die with it rather than of it. Very much looking forward to reading your essays.
I was hoping Julie's family would agree to leaving this thread up on BCO as a memorial to her. Perhaps, Geeper, you could ask them.
0 -
Sbelizabeth,
Your video wasn't up earlier -- I just watched it and wept. Where did you find it?
{{{HUGS}}} I'm happy to see you...
bride
0 -
Sorry for posting here but wanted to post my condolences to everyone who was close to PurpleMinion. I also want to send my thoughts out to you Geeper as I am so sorry to hear of your dear husband's passing as well. It is all too much sometimes indeed. My thoughts to everyone here who knew Purple Minion and of course her family.
0 -
Hi, Bride, it's so nice to see you too--(((hugs))) back to you. The Life of Death is a video I found on Youtube. It's hand-drawn and produced by Marsha Onderstijn, and has won several awards.
The simplicity and piercing sweetness of the little story brings me to tears each time I see it.
0 -
Oh my goodness, I just saw the news about Purple. So very sorry, she was SO BRAVE. Just so wrong. Just so sad. My heart goes out to her family. She will be so missed here. Love you Purpleminion
Geeper, my condolences to you sweet lady. SO sorry for your loss. Just so sorry. Hoping God can comfort you and your children.
0 -
Hello friends,i just read about Purpleminions passing,its just so unfair this dreadful disease,i had chatted with her a while back and she seemed so positive,this really shocked me!! We must band together to encourage the medical people to find a cure.
0 -
So sad about Purple, please keep this thread going, it's been my lifeline.
0 -
yes Val, still mourning our Purple Minion. Hugs
0 -
I'm hoping Geeper will ask the family's permission to keep this thread going. This one and its previous iteration have been a lifeline for many.
0
