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Hello Wendidarling. I'm not sure if the boards here are active, as it looks as if nobody has responded to either of us. That said, I am so sorry to hear that you are going through such a tough time. I do hope that you keep fighting! I'm not sure if you are a praying person, but the book Christ the Healer is a wonderful read and so comforting. God bless you!

~Molly

Hi @wendidarling - Thank you for the extra bit of positivity. It's hard sometimes watching those numbers go up while still trying to enjoy this good time that I have with no symptoms.

At the infusion center where I went for chemo last year they always use ports, so mine was placed at the same time as my staging surgery. I have even had issues during normal blood draws, so it makes a lot of sense using a port for something like an infusion. I definitely am not one to give any fashion advice and most of the other patients I saw kept theirs covered up too. Maybe you could start a new trend like Nelly did with the bandaid on his cheek.

I was more in the camp of just in general hating the idea of having something implanted in my body, though. I got mine out at the earliest possible opportunity (against the advice of my oncology team). After having it out for a year, half of the scar (where it was both inserted and then removed) has already faded significantly. It was almost to the point where I'd feel more comfortable with being seen in my swimsuit. But if I have to do any type of infusion again, yes, it's definitely worth it for me to get a port installed again.

I hope whichever treatment you get lined up ends up going easier with the port this time around and gets you to a more durable remission. You got this. 💕

Hi Wendi - I'm Ruth. Don't worry about the rant!! That's what this place is for. You're safe here, and you can unload those feelings any time. This is a very tough battle we're in, emotionally and physically. I know exactly what you mean - this is a lonely journey, and yes - we spend a lot of time thinking imagining… trying to project and get some control over this beast. I've been at this for a year, and the only thing I've figured out is that sometimes the biggest battle I'm fighting is in my head. I can freak out over a result and before I talk to my doctor, I go totally off the deep end. Until I'm not. It's great you've got such a supportive network— me, too. In fact, I never realized how much I'm loved in this world till my friends surrounded me like bubble wrap. That helps, but hey - you and I are the ones actually going through it. You're stronger than you know— and there's so much promise in the research for OC. Just keep going, keep fighting. Women are living longer with this thing than they did years ago. Hang on, dear girl. A day at a time, a week at a time, a month at a time. You can do this. Sending good energy your way—Ruth

Hi Cllabuhn. Oh, I hear that. Loud and clear. I'm sick of being sick, too, and I've only been at it a year! You've had to go through having the rug pulled out from under you when it returned.. especially after two years. You must have been devastated to need that port again. I hear you, I do. I'm curious, if you don't mind sharing… what were the subsequent treatments, and how were they? I'm platinum resistant, so very quickly had a recurrence and am just finishing up gemcitabine, which I'm finding to be rough. If you'd rather not get into it, believe me I understand.

Ruth

Regarding a mediport - I didn't have one the first year, a decision I LONG LONG regret. Had to put up with 8 zillion stabs, either for blood, chemo or the contrast for scans. And they always went for my hand or forearm, which hurt. Finally my veins gave out after getting gemcitabine which is particularly rough on the veins. Ended up in ER with blood clots and thrombophlebitis. They asked why don't you have a port? I said I didn't want all the maintenance, and I didn't like the look of it. The nurse was like…. "whaaaat?" When I saw people in the waiting room for chemo, they all had these little tubes coming out of their chest. I thought they went home like that. I didn't realize that was just the port being accessed, and they take that out before you leave. If I knew that a year ago, I wouldn't gotten the port without question. Makes life ALOT easier, and we can all use anything that makes this hellish journey a bit easier.

Connie, it was so good to hear that gemcitabine worked for you. It's a bear, though. If I were any more debilitated I'd be unconscious, and the mouth sores are no picnic. Just one more round for me. You're right - unless someone has cancer, they really can't "know". Do you have any cancer support groups? Have you heard of Uniteforher.org? It's been a lifeline for me. Stay strong, dear girl. Ruth

Hi Wendidarling,

So sorry that your cancer has returned. I am relatively new here too. Hysterectomy in April and chemo started in June. I debated a port too, but I am a tough stick on a good day, it has made everything easier. I am glad I did it. Sleeping the first few weeks is tough, but once it heals up some, it's not a problem. I am glad to hear that you are fighting and that you advocate. We have to, no one else has as much riding on all decisions. Since the diagnosis on May 20, I feel like I've been getting a PhD in Cancer. I had both Ovarian and Uterine. The CT scan shows nothing there (hopefully, right), and we are doing six rounds of chemo to "clean up" any cells that ruptured loose during surgery. I have just come out of my hell week (the week after infusion) on my third cycle. There is so much the doctors and nurses don't tell you, it's frustrating. I know it's not reasonable to tell every patient all the side effects and what to do about them, but they handed me this huge binder that could specify more and give the treatments. For example, I had wicked leg and bone pain after infusion one. I couldn't get comfortable anywhere and neither Advil nor Tylenol touched it. We called the nurse line- they are great at my hospital, and they recommended Claritin- the allergy medicine. It did wonders- that could have been in the book under pain. It's like they are afraid to give too much information-which is silly because these days with the internet people can get plenty of information, you would think they would want to make sure you had good information. I also discovered through trial and error that heat helps the pain, soak in a tub, heating pad, or in my case the guest bedroom with an electric blanket on high. It's 90 degrees and humid out and I am under the electric blanket.

You are heard and my best wishes go out to you. As I said, I am not very seasoned, but I try to log on and listen. Hell week I mostly sleep, but I always check back in because it helps to talk to others who share our situations.

Beth

Dear Teal Sisters,

I just heard about a retreat in September in Montana, for OC patients and survivors called Camp Mak-a-Dream. I have signed up. If you are well enough to attend, I recommend spending time with other women who you can relate to and learn from. I am not entirely sure, but I think it maybe free, and they award funds for transport to ladies who need it.

I found it hard to find other OC ladies locally, for more than a year post diagnosis. I then proactively asked my surgeon at a check up, and finally met one other lady. Then through her another. It feels so good, and less frightening when you find others that can actually relate to your OC.

I have now found a local organization in Seattle specific to OC research, with survivors positively turning their remission into working towards advocacy and supporting research into a cure - the one I have been raising funds for... Powell-Drescher Ovarian Cancer Research Foundation. I heard about this particular retreat Camp Mak-a-dream, from a lady at a social gathering they organized.

I hope some of you may be able to go too.

https://www.campdream.org/event/adult-retreats-ovarian-cancer-retreat-spring/

Hugs to all! Xxx