Choices
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Welcome Mashedpot. Sadiej and I found each other about a month ago, and yes we have developed a great rapport. She was the first one I found that was very open as to what ride I got on. We are very different in that I have chosen not to pursue chemo/mas/radiation. I have chosen quality over quantity, knowing that my quality may not last long. That being said, I have four trips planned in the next four months to see extended family and friend. I just got connected with a palliative doctor who I love and truly believe she will be there for me as the cancer and pain spread, and eventually go into hospice.
Sadiej had cancer about 10 years ago, went through the program, and is now fighting a second round.
I have only told two couples in my community as like you, other than an aching breast, I don't feel any different and don't want people looking at or treating my different. I'm just taking an Advil or Tylenol two times a day. I did tell family and a couple of close friends. My sons really took it hard and wanted me to get treatment, but they are now also accepting of my decision. Our immediate family of 12 got together for a vacation about three weeks ago and it was a blast, cancer never came up as they had accepted my decision a week before. I told them not to expect a "sickly" person, but one full of life and laughter as before. When I did tell each one, I had written a page I emailed to each about finding the cancer, what was expected as far as treatment, how I felt (no wanting that road). I sent the email to my sons first, then called shortly after to talk with each in person. Then I did the same process with siblings; then close friends. That gave them some time to digest before we discussed in person and I think it went smoothly.
I have to leave for a meeting, but welcome you and look forward to future meetings.
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Mashedpot, I just reread your post and you asked how long this was going it. I answered as to Sadiej and I corresponding. Now realize you were asking about our diagnosis.
I felt the lump in my breast this past Jan so not long for me. Took about 5 months to see doctors, do all the tests and get the results and suggested program back. So I am very young into this process. In age, I am 70 years old.
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Thank you Claoh for your kind comments and for your advice. I really appreciate you! Don't let anybody tell you you are not awesome!
So Mashedpot, I haven't taken the time to properly welcome you to our little board of triple negatives. We are each speaking our journey for anybody that comes along later (or sooner) so that they can get their own ideas and make their own decisions from a real viewpoint. What you're going through is very important to both of us and we offer encouragement as you travel your own path. Your decisions are yours, and we will not try to sway you from them.
That being said, I was diagnosed after I found my lump in April. The doctors in my general area I didn't feel were competent enough to deal with such a rare and invasive cancer so I travel 3 hours to the Cleveland Clinic for my treatment. As a matter of fact I'm getting packed now to head out there for tomorrow's surgery. I have no idea where this will take me nor do I know whether or not they can get this thing under control but I do know that I have great friends right here that I can walk with. I started chemo this month as well as getting the gamma knife surgery tomorrow. My chemo runs as 6 sets., once a week for 2 weeks and one week off. I'm not sure what happens after that but I assume since I'm getting a port put in at the end of this month that my go-rounds aren't going to stop there. I have had two chemo treatments so next week I have off. I haven't lost any of my hair yet but they said it's usually around the 3rd or 4th treatment that you start losing your hair. At least it's summer LOL.
You will find Claoh to be a great friend and an encourager along the way. I hope that I can do the same for her when it comes to a little bit more than a small dose of aspirin. I'm very grateful to have found this site and I'm very grateful for Claoh being there. I was getting a little frustrated trying to find anyone else that was dealing with this when I came across her post and we basically have been going back and forth ever since.
Anyway, welcome to our little "club". I'm sorry that any of us have this but at least we all know that we have help and support. That includes you too mashedpot. We are here to support you and throw hugs your way as we travel this journey together.
Pat
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Good morning Claoh!
Thank you so much for your thoughts and prayers! I had a serious panic attack coming out of the hotel and my poor husband didn't quite know what to do with me lol. I had to get to the car and away from everybody and just sit in the car. I wouldn't even let him have this morning coffee at the coffee bar until I was in that car. How's that for silly. But the car was a familiar thing. I needed something familiar to calm me down. After I was in the car I let him go have his coffee. It wasn't exactly nice of me but..
The all day (6:55a - 3:00p) went better than expected. Everything was done and I was out of there by 10:00 a.m. . And they were right when they said you're tired afterwards. I was extremely lethargic and really couldn't do much more then turn over and fall back asleep again. I slept the whole way back home, through the night and late into the next morning. I saw your text but as everything else I was simply incapable of answering it or doing anything else. When I finally got up it was a bit rough for me. I have low back issues and laying on that MRI bed and the hospital bed that they had me on for that amount of time took away all feeling in my right leg and I found I couldn't walk. It took my husband a few trips around the house with me hanging on to him and even then it was pretty iffy. I had to use my cane (something I rarely use) for the rest of the day. (Usually when I get to CC I will grab a wheelchair because I can't walk long distances). I hate to admit that because I always loved hiking and rock climbing and canoeing and horseback riding. I try not to think about it because it would frustrate me.
Anyway on a happier note the treatment was a success (so to speak) and I go back for an MRI in 2 months to see what the status is of both that metastases and to make sure there are no others. What the gamma knife does is kill the metastases but does not destroy it which makes sense because if it destroyed it you could get necrosis in your brain. So the point of the gamma knife is to simply stop the growth. Dang, I think I'm learning a lot more medical info then I have ever wanted or needed to hear LOL.
How are you? I can't say how much your prayers really helped. I thank you so much for those! That was probably the reason I got out at 10:00 instead of 3:00 and it went, as the doctor put it, excellent. I still say prayer is real and helps us along the way. So are you still on just aspirin? How did your palliative care doctor visit go? I am so glad you have one now. They're extremely important in our walks.
I guess I have "talked" enough. Thank you for being a friend Claoh. Mashedpot, we would love to hear from you too! Drop us a line whenever you feel you need to talk to two very understanding friends.
Pat
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SO GLAD to see you on today. Each time I check every day, I pray all went well and glad to hear it did. Appreciate all the knowledge you give me also about what you're going through. I am still doing well, each day wake up thanking God for another good day. Still on the 2 aspirin a day, rejoicing that that is maintaining. I will go back to my palliative doctor on August 23rd. Will see her once a month. Really nothing for her to do right now but have me check in. She is very personable and I will enjoy my time with her each month. I also have that yearly medicare appointment with my general doctor next month and also thoroughly enjoy her. I did share how gracious she was when stole me from urgent care for bug bites so she could se me personally, without an appointment. So heart warming that she is caring and wants to know what is going on with the cancer.
I would also like to see mashedpot again. Hope she has found a good support group, even if it's not us at this time.
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Good morning.Claoh
I think that sometimes having a light week with only a couple local doctor appointments really isn't good. Had an appointment with wound healing at the foot doctor (still dealing with previous chemo issues and had to have two more toenails removed) and getting myself measured for a lymphedema sleeve. Then what? I seem to sink into the realizations of what I'm dealing with and the only thing I can say is that it's a very tearful experience. Tried to break out of it but sometimes it's just gets hard. So I think that the crazy schedule, AKA 5 appointments on Monday at the Cleveland Clinic, is actually a lot better way to go because it doesn't give you time to think. Having a real hard time getting over the word "terminal". I'll get there, I'm just saying it's hard sometimes.
Since this was my week off I begin the chemo treatments again next Monday. The good news is this Friday I'm getting this cast off my left arm and hand that's been driving me crazy so I can actually have TWO hands now to do things like make my own coffee LOL. I told my husband that they had better take it off or I'm not leaving ha ha.
How are you doing sweetie? I know you missed my posts and I think of you everyday. I even wrote your appointment for the palliative care doctor you're going to in my calendar lol. I think what set me off before in the first paragraph was when rehab asked me what happened to me. I walk in with my cast on my left arm, my cane in my right hand (needed for balance because of the chemo-induced peripheral neuropathy), trying to fill out forms for them when my ET is so bad. Yeah I think that's what threw me for a loop LOL I missed you dearly and our conversations. Having you as a friend is very important to me and helps me get back to a place where I need to be. I go through these things trying to remember that it will get better (aka the gamma knife surgery that stopped the brain metastases as well as noticing the swelling going down a little as chemo starts to work with my system). I have to remember to look at the blessings in my life like my husband and daughter so I don't get overloaded. If anyone reads this and is in the same position I highly recommend that you focus on the things that bless you and bring you happiness. And as for you Claoh, I cannot tell you how much I am grateful for your prayers.
Pat
P.S. just found some interesting reading on the. FORCE boards that I follow:
https://messageboard.facingourrisk.org/t/rad51d/9914
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Ecstatic to see your post Pat!!! Told my husband I'll have to give him my password so if I can't send you a message, he'll have to let you know what's up. : ) I really do miss hearing from you and constantly lift in prayer that all is well. I'll have to set this up to have access on my tablet as I'll be out of town most of next week, and usually use the regular computer.
Looked up the site you mentioned but said it was either private or not available.
I've been saying the same thing, as your last couple sentences, recently to family and friends, "It's so different to KNOW each day is a blessing to be cherished , and how it affects decisions to be made and what's really important."
You are a real warrior Pat and impress all the time with your resilience. Glad you're getting the cast off tomorrow.
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Hi Claoh
Try this link.
https://www.frontiersin.org/journals/oncology/articles/10.3389/fonc.2022.963728/full
They're talking about silencing a gene that isn't normally checked when they do the genetics test (at least not for me). It is the RAD51D & C genes that I have been researching today. This report looks promising to me but I'll take it with a little bit of salt. 🤔
On another note you should be able to sign up to the FORCE boards. The site is free. Thank you for your kind words. I really appreciate having you as a friend. That was a really good idea you came up with and I told my husband the same thing. The journey continues...
Pat
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Thanks for link. Looked at several of the articles for TNBC. It does get overwhelming after a few. When I see the photo of the enlarged breast, I still wonder why my surgeon wouldn't take off the breasts without the chemo. I know there is chance of spread, and like everything no absolutes. That's where we have to take the road that gives us peace. My general physician asked if I'd get another opinion about breast removal, but I'm not ready for that. I choose my road, and look forward to the four trips I have in the next three months to see family and childhood friend. Now, if I get a cyst like photo, that changes a lot. Again, I may be naive about what is to come, but trust in my palliative doctor to handle pain.
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Laugh louder harder longer that we may enjoy our lives together whatever moment that may be.
Hi Claoh
Wanted to get a quick message out to you today to make sure that everything's okay with you. I've been a little bit busy and have been having all kinds of issues with bodily waste LOL. Tomorrow I get my port in and the following day I have chemo so I will probably catch up to you after that. Sorry the note is so quick. Just wanted to make sure everything's good with you and I see that the palliative care is going to work out really well for you which makes me happy. All right I got to get packed so I'll talk to you later.
Pat
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Good morning new to this site. I understand that it is for breast cancer triple negative people. I was diagnosed in May of this year and after MRIs and biopsies and ultrasounds I’ve now I’ll be gone the next journey I had my port put in July 10 and had problems with them accessing it had to go and have the radiologist Who put it in check it for flush and return and now I have started my first round of chemo with AC. One infusion every three weeks times four cycles. First day of infusion, head, screaming headache and nausea and heartburn. Second day not too bad I’m now on the third day post First infusion and the fatigue is creeping in. I will post again in a few days.
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Welcome to the site marlakeeth. This is where we triple negatives talk about our journey and try to encourage each other as we go along our paths. I'm sorry you were diagnosed with that. I'm going through chemo and I had gamma knife surgery a couple weeks ago for a metastases of the brain. I'm tired and like you get headaches and nausea after the chemo treatments. My treatment schedule is once a week for 2 weeks and one week off. It's getting harder but for the sake of my family I will continue. If you have any questions about this particular board for triple negatives please feel free to ask or just comment on how you're feeling or what's next on your schedule. We welcome you with open arms even though we wish you weren't here and were healed and whole. Each of us has their own journeys but we have chosen this choices board that we may tell others what we are going through so that they can make their own decisions. I hope that you will continue to input. It feels good to have people around you that know what you're going through and we encourage each other. Welcome.
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Hi marlakeeth,
If you've read our posts, you will see I choose another path. All three of us are at different stages, paths and our goal is to encourage each other as we go through this unforeseen event in our lives. There are no absolutes, but hope you will gain strength and peace through our communications. Keep us posed on your progress.
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Sadiej, I just got back from being out of town. It was a nice visit with my son's family. We are now looking forward to my husband's sister visiting us for a few days mid month. There are no changes in my pain at the present time.
Hope you are being able to cope with the chemo side affects. Are you able to get up and about or does it wipe you out for a couple of days?
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Seems To me, I’m kind of wiped out. This is day three post infusion dozing off and on most of the day Compazine keeping nausea at Bay.
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