<p>I can see how hurtful your brother’s response is for you. My post above was more thinking of the friend/ former nanny you mentioned – you said she practically raise your kids and that your son was disappointed that she is no there for you now as she gave so much of herself in the past.</p>
<p>sunrise - It’s always good to hear your thoughts and I’m glad you are doing well. I’m sorry about your brother. I hope he’ll come around and surprise you with brotherly support. Could you contact him again and give him one more chance? I know you shouldn’t have to, but some people just really don’t know what they’re supposed to do. If you did “protest too much”, it’s possible he doesn’t see a place for himself. If it’s bothering you, tell him.</p>
<p>As for offering help - A good friend has recently been diagnosed with pancreatic cancer. My H and I have been visiting and I kept telling his wife, my friend, to call me for anything she needs. She wasn’t calling, so I started asking her “yes” or “no” questions like “Do you want to go to lunch today?”, “Can I get something for you from the store?”…This has worked. We’ve met for lunch a couple of times and I’ve had the opportunity to help with errands. I think the offer of “Call me if you need me.” was too open ended and she is just too overwhelmed. A “yes” or “no” question works much better.</p>
<p>BUBC,</p>
<p>You are doing absolutely the right thing. When people tell me to call them for any help, I thank them, but I don’t call them. I really don’t want to impose on people, and I don’t know how serious they were when they offered the help. Some people may have said it in passing. Not that I think they were just doing lip service, but I don’t know what their availability looks like. They may have really meant it when they offered help, but something else may have happened. They may be very busy. They may be consumed by something else. I don’t want to call and put them in an awkward position of saying “I am sorry, this week is not working out”, or make them jump through the hoop with any conflict in schedule, etc.</p>
<p>Usually I end up getting help because a friend called and said "you are going for Chemo. Your husband can’t take a day off every week. Which date do you want me to sign up? When they offer help with that specificity I end up saying yes.</p>
<p>Your thoughtful approach must be greatly appreciated by your friend.</p>
<p>actually, regarding my brother, it would be absolutely comical if it was actually not so sad.</p>
<p>So, I called him and told him about the whole thing. He said, do you want me to call you at times? How often do you want me to call? I said, “I always love to hear your voice, but I will leave it up to you when/if/how often you call”. that was the last conversation I had with him and it’s been 6 weeks. </p>
<p>OK. I am on a roll today - not in such a positive way. I should get off this narrative. Back to the original programming…</p>
<p>SE- I am sorry your mother is so, so, well, a drama queen? Self-indulgent? I am not sure how to phrase it without coming across as judgmental. I, too, know people like this, it is all about them, even when it is supposed to be about someone else. How sad to think you would have to daily console her about your cancer, draining you rather than supporting you, and how wise you are to understand her limitations and save yourself the hassle of hoping, finally, she might rise to the occassion.</p>
<p>
</p>
<p>I like the word “limited” because often that’s what it is and also because it makes it feel less personal – that this is who this person is and how he/she is in the world. It feels less hurtful when I think of it that way.</p>
<p>I only have two things to say to you.</p>
<p>Good for you, and I’m proud of you. Really.</p>
<p>And I don’t mean that in a sarcastic way at all. Optimists and just flat out amazing people like you give me hope for humanity.</p>
<p>actually, my mother is a very kind and gentle soul. There is no meanness or ill intention. Her shortcomings are stemming from her weakness. She is a wonderful dependent, just not a person who others can depend on, not because of her ill intention or desire to take advantage of others, but because she is simply not emotionally strong enough to lend support to others.</p>
<p>I am such a critically important component of her emotional well being and she depends so much on me that she can’t handle any possibility of something happening to me. </p>
<p>Actually last several decades, emotionally, I have thought of her as my child. I have taken care of her like I would a dependent child, while making her feel like she has done an outstanding job as a mother. I feel compassion and empathy toward her. It would have been better if our emotional relationship can be two way, but we don’t always get what we want, do we? She was a kind and gentle mother and let me have my way when I broke the mold of the cultural expectation of a very conservative culture. I think she has earned her stripes plenty by letting me who I am. </p>
<p>One of the first things that occurred to me when I knew what I had was to wish I will outlive my mother - the thought of going before her and leaving her behind is unbearable: she would be a walking dead at that point. Now, I am doing so well and full of optimism, I think I will outlive everybody around me :)</p>
<p>sunrise -
Thanks. I hope so.</p>
<p>Sending wishes to you for a wonderful day.</p>
<p>I’ve read bits & pieces of this thread, but haven’t seen how you are juggling all the well meaning friends & neighbors who want to help, but don’t know how. There’s a great website called Lotsa Helping Hands, where you can set up stuff you need such as meals, transporation for you or other family members, errands, etc and people can sign up for specific tasks and they will receive email reminders the day before.</p>
<p>It’s wonderful - my 48yo neighbor had a massive heart attack 2 weeks ago & it has been a wonderful resource for his wife to manage the outpouring of support. It also allows the administrators to send email blasts to update his condition, etc. </p>
<p><a href=“https://www.lotsahelpinghands.com/[/url]”>https://www.lotsahelpinghands.com/</a></p>
<p>Sunriseast, I can so understand you not telling your mom. My mom is such a worrier that I try to keep any less than happy news from her, truly afraid it would affect *her own *health.</p>
<p>My guess on your brother is that he is either freaked out, confronting his own mortality for the first time, or trying very hard not to confront his own mortality. When a smoker gets lung cancer, or a morbidly obese person has heart problems, we can tell ourselves, “well, I’m fine, that will never happen to me.” But diseases that spring from nowhere rock everyone’s sense of not only security, but fairness.</p>
<p>mimk- limited- PERFECT, thanks for giving me the right description, it’s difficult to tell the story of someone who is limited when the descriptors sound pejorative but you are merely describing a fact not trying to tell a ‘poor me’ story, just a story of how life really is.</p>
<p>People are who they are and we can rail at the fates that we deserve better, but it’s likely not going to change. SE- it seems like you have evolved to handle your mother’s limitations with a grace and acceptance that is so sweet. I can also empathize with the preference not to have to be her strong shoulder during your health event. I think we all have people in our lives with whom we share the good stories, but not the bad, out of self-preservation.</p>
<p>I had a six week post op consultation with my doctor. All is good. He think I am doing very well – yeah, like I did not know, but it’s good to have it confirmed.</p>
<p>I finally asked him the question of staging of my cancer. After the surgery, he said “advanced” but did not go into the actual staging statement.</p>
<p>I knew it was at least stage 3C if the final diagnosis was ovarian in origin. I knew it would be stage 4 if the final diagnosis was uterine in origin. There was an ambiguity about where it originated from. My doctor thinks it’s uterine and the hospital pathologist thinks it’s ovarian. </p>
<p>The last time I saw him to have the staples removed was the day after I had a really dark, macabre time performing an act of self flagellation of doing mortality statistics research. So, I was really not in a mood to delve into the subject matter.</p>
<p>Today, I pressed him, and he said his clinical assessment is that of the uterine origin and it’s stage 4B. There is no 4C, and there is no stage 5. So, this makes it as high (?) as it goes. He was quick to point out that the prognosis and treatment are about the same. He also stressed that the overall statistics don’t really matter since how my body handles the disease is much, much, much more important variable to determine my personal prognosis and all indications are I am doing as well as anybody can possibly expect. He declared “those statistics you read are not for you”.</p>
<p>Yes, I know all this. In fact, this is how I debriefed my kids. No, nothing really changed between yesterday and today. Yet, the phrase “stage 4B” is not easy to swallow. After I left his office, I sat in my car for a few minutes. For about a few minutes, I thought I might cry, but it did not happen. I turned the ignition. Where now? Home? I decided to head to the mall instead. It’s snowing again in NJ, and a mall is a good place to take a walk. I read that other than the usual factors such as successful surgery and chemo, the single most important factor for good prognosis is exercise. So, exercise I must. </p>
<p>I agree that the overall statistics do not apply to me since I have everything going for me that will put me on an entirely different statistical curve. One of the factors I am counting on is that I am very well informed and I am very disciplined to do whatever is necessary to maximize my odds. Hence, I need to follow through what I laid out - otherwise, I would be kidding myself when I say I will be the extreme outlier. I am walking 4 miles a day. Soon, as I get better and better, I should be able to get back to my intense cardio routine. As for dinner, I think I will have an extra serving of broccoli – it’s supposed to be loaded with anti cancer nutrients. </p>
<p>I must confess for about a nano second, I wondered “why me? I have lived such a healthy life!” But then again, I thought, “why not me?”. In fact, if there is a Cosmic Score Keeper whose mission is to keep everyone’s fate a fair deal, it would realize very fast how I have been given all the advantages in life and how unfairly fortunate I have been all these decades. Even with this disease, I have been favored by fate and fortune, and I have been given a winning hand to handle this condition with maximum odds of success. So, better not tip the Cosmic Score Keeper off of his mistake by drawing its attention to my unusually fortunate state of affair. It may feel compelled to “redress” the balance. No need to temp fate. </p>
<p>In the end, nothing changed between yesterday and today. I still think this year will be the best year for me!!!</p>
<p>PS: good news. My doctors think it’s no problem for me to have business trips and what not as long as my body feels good and my blood counts are not tanking too bad.</p>
<p>Not such a good news: I asked him whether I can still stay on an organ donor list when I go into remission. He said, no way. Not only that, I am now NOT allowed to donate blood. He himself is a cancer survivor and nobody wants to take his blood. There is a silver lining in everything - now I can pass by the blood donation campaign with no guilt whatsoever.</p>
<p>Another silver lining: I heard that in some cancer survivor groups, there is a competition for who has the most advanced diagnosis. Well, now, I beat everybody hands down.</p>
<p>Sunrise, sorry about your staging, but I think the important thing to remember is that it doesn’t change what you are doing. FWIW, our relative got a similar diagnosis over 16 years ago. They gave her less than 5 years then. It has not been a picnic for her each and every day, but she has done quite a lot over the last years, kids grew up, travel etc. Keep your spirits up.</p>
<p>Also FWIW, I had a mother like yours. I could never give her bad news of any kind, it was too much for her. For her own troubles however, she was pretty independent, and never wanted to burden her children with her troubles, so I can’t really complain. In that way, she served as a good example to me of how to be strong when the chips are down. I think it may get hard for you not to tell your mom, so if you need to complain somewhere, do it here. Lots of broad cyber shoulders…</p>
<p>You are a strong woman and your head is in the right place.</p>
<p>My D’s dance teacher was diagnosed with advanced cancer at the age of 29. She’s been through a lot in the last couple of years, but is now happily planning her wedding. I’ve told her that when she is older, she’s going to be the calmest, most unflappable person around and everyone will wonder how she got that way. Sunriseast, sounds like you are already that way.</p>
<p>One more story. Last year I caught up with a friend and asked how his mother was. He said that age 92 she was diagnosed with ovarian cancer, had chemo and is doing perfectly! I was so impressed with mother, son and doctors, that they didn’t just give up because of her age!</p>
<p>GOOD NEWS!!!</p>
<p>The first round of 3 weeks of chemo is over, and the test results came back to show dramatic reduction of the cancer marker (CA 125 for those of you in the know) - not in the normal range yet but drastic reduction! This proves that my hunch was right, that is, for me, chemo started working almost immediately. I developed this hunch based on less frequent and more subtle abdominal sensation - the sensation I felt much stronger before the surgery, and strong still, though not as pronounced, after the surgery and before chemo (I had large clusters of cancer left around the bowel so it’s not surprising that those odd sensations did not disappear after the surgery). I started to notice this change within a week of the first chemo, and I felt that chemo was already doing its job.</p>
<p>AND, this is even before a powerful third drug is kicking in. This drug is going to be given to me from the onset of the 2nd round (each round is three weeks). I expect further improvement when this kicks in!</p>
<p>I did not want to call the doctor’s office about this test result since I was afraid it might not be down as I was hoping for, and if so, I wanted to have a couple of days in a cocoon before I get the results in person. Yes, I am a chicken… but yesterday, I got the final word of stage 4B for my cancer, as advanced as it gets, so I needed a break - so you can excuse me for this cowardice. </p>
<p>My husband, without telling me, called and found out. He said, if it’s good, he will tell me, if not, he will let me stay in a cocoon a couple of more days. He came down from upstairs bursting in joy and told me this (snow again in NJ/NY. he is working at home today rather than commuting to NYC). Not only I am so happy that there is a conclusive proof that I am a “responder” (that is, a patient for whom chemo is very effective), but I am so touched by my husband’s thoughtful, caring, and compassionate love. I don’t know how I would go through all this without him!</p>
<p>By the way, I found out that my husband knew all along that my cancer was staged at 4B: the doctor told him right after the surgery. He said, he never got around to tell me this first few days after the surgery when I could barely sit up and walk, and then seeing how well I was doing, and given that I did not ask the question point blank, he let it stay ambiguous. On my part, I knew all along that it probably is what it is, but again, did not want to articulate it by asking point blank. It’s a hard phrase to swallow: 4B. Yesterday, a big part of my sadness after I got the definitive words was the thought of dragging my husband down to the abyss again. I did not want to sadden him. I did not want to drag him to dark places. I was so relieved when he told me that he knew all along.</p>
<p>I do believe that how well I respond to chemo is much more important predictor for my prognosis than whether it’s ONLY stage 3 vs. more advanced stage. OK. So, I have upped my life expectancy to 99. After the diagnosis, I shaved off 10 years from 100 (the number I always thought I would hit). When I go into remission, I am going to revise it back to 100).</p>
<p>Very, very happy for the good news! Your attitude, fortitude and honesty in this process are so inspirational! H sounds like a gem, with wonderful sense and compassion. Putting life in perspective is a great benefit of reading your posts. Waiting for more happy news after the 3rd drug kicks in.</p>
<p>So glad you are responding to therapy! </p>
<p>And I totally understand you not wanting to sadden your husband. A few years ago when he had a very dicey colonoscopy (the kind where you can hear the worry in the doctor’s voice), I worried non-stop until the pathology results came back aahd he didnt’ give it a second thought. Just recently when I had a little scare myself, I was calm and he was freaked.</p>
<p>Sunriseast,
I have been following your thread but this is my first post. I have to tell you how happy I am for your news! I think about you often throughout the day and wonder if I could be as strong as you are should I ever get a diagnoses of cancer. </p>
<p>Enjoy the wonderful day with your wonderful husband.</p>
<p>Yay for the response to chemo! You are right, it is your body’s response that is far more important than the numerical stage.</p>