My iPhone told me I had IBC. : |

anonymice

I was diagnosed with IBC yesterday.  My daughter was having eye surgery and I was waiting for her to go to recovery, when my iphone chirped up and said I had a new message from my online chart.  I'd been for mammograms, exams, biopsies so I looked at the message and it was telling me I had an appointment for Monday - at the cancer center.

 Ugh.

So then my poor little girl wakes up from here eye surgery and she wakes up quite badly...very sick, crying, and in pain.  I think I was almost in shock from it all. 

Today, I got a call from the breast center telling I needed to come in and bring someone.  I said "so that means I have cancer" and she said "no, remember you signed a document saying everyone has to..".  I'm quite sure I did but I bet they actually  just mail the good results.  I told her that I already saw the appointment at the cancer center and she gave in and admitted it.

Anyway my whole life shifts on Monday .. lab, onc visit, port, surg visit, psych visit.  I don't know anything yet except my diagnosis. 

 I never have liked that stupid iPhone.

I've never been so scared and so sad at once.

 Thanks for listening. 

Faith316

How do you know it is IBC?  Did it just say appointment at the cancer center or was there more?  Sorry for your news.  But, you are in the right place to get support.  This forum is a big help.

anonymice

The person on the telephone who arranged for my day of visits on Monday told me.  She called to ask me to come in so I could be told my diagnosis, but when I told her what the online EMR had told me, she admitted it and confirmed all our worst fears, Inflammatory.

squidwitch42

oh Pam,

I am sorry, and what a way to find out. So you have been through a lot already with thinking this may be cancer, and taking care of daughter too.  There is a wealth of information here, and lots of support.  Yes, your life will shift, and already has. I also hear strength in you, and a little humor thrown in (sarcasm is my personal favorite.) I went to Psyc too, it was under their new survivorship program.  I still go, but have "graduated" along with my MD.  I have found it to be incredibly helpful, and knew right away I was a good match for this and treatment support group. There was also a wonderful Social Worker that I met when I started chemo., so there are many avenues to take when it comes to getting help through this. 

Again, I am very sorry that you are having to go through this, and I wish you the absolute best for you and your family. When I started coming here, I especially liked hearing positive stories from ladies who had the same type of cancer as myself.  I am sure you will hear some inspiration.  I didn't have nearly the hope I should have had going into it....and there are many stories to inspire you to Believe.

(oh, and because I have seen this written so many times for new posters, I'll take the leap...I believe there is a limit on how many posts you can make in 24 hours when you first join..5? but you can PM (private message) as much as you want.) I think after that you can post away.

traci

BarbaraA

Oh Pam, my cyber arms are around you. To PM a member, just click on their name and you will be taken to their bio. On the right side is a link that says 'send member a private message'. The PM's saved me in the beginning when I knew nothing. Please feel free to contact any one of us and we will help in anyway we can.

Dilly

Oh Pam I am so sorry you had to join us, and to learn in such a way.  Hope your daughter is feeling better, and that you have great success with your treatment.  You're in the right place for info and support. (( Pam ))

lexi4

Oh, I am very sorry that you have been diagnosed w/ IBC. And yes, a pretty stinky way in general to find out. My thoughts and prayers are with you for comfort during this anxious time. I do hope that your dd is recovering well and will heal completely from her own surgery.

Hugs and Prayers,

Lexi

anonymice

Thank you so much, everyone.  It means so much to have other to talk with that understand how frightening this all is.  

I am not surprised to be sad and scared....I am a little surprised that I feel slightly better now that my diagnosis is confirmed (I had to fight no one to take me seriously, educate no one on IBC, and so far have received appropriate diagnostic measures, really pretty quickly).  The waiting was agony, especially since I *knew* the problem but everyone tried, very reasonably, to tell me it was not very likely.

What I *am* very surprised about is how guilty I feel.  I know how devastating this will be for my loved ones and it is so painful.  It is a hard thought to chase away, as it's not rational to feel guilt, but very rational to feel sadness at what they will suffer as well.  

Traci, I think I will be strong, but I am not pushing it and am just crying my eyes out right now (my little ones are with their father for the long weekend).  But I am really easily amused, and know a lot of funny people, and I whether I have 2 or 20 yrs left I am going to try, really hard, to find some joy and laughter and love in every day. 

Of course ask me in three weeks about that joy and love and laughter and I will probably have a very different response...hahah...but for now that's my story and I'm sticking to it.

Thank you, each one, for reaching out to a stranger who needed help tonight.  I don't know the ins and outs but I would love to message with and get to know you all.

squidwitch42

Pam,

and it's good to cry too, get it out. you don't need to be anyway except just where you are.  We laugh and cry here. I hope you are able to get some sleep, and we all will be checking in on you.

((((((BIG HUG)))))

traci

ibcmets

Pam,

So sorry to hear about your diagnosis, especially when you're dealing with surgery for your daughter.  I know you'll be researching this a lot and let us know if you need any help in navigating resources.  I'm 15 months from diagnosis and doing well so far.  I was even diagnosed stage IV w/ bone mets.  That was scary but I got through everything and have a great oncologist and many wonderful friends. 

Lean on us for support and information.  We are here for you.

Hugs,

Terri