First, the good news: The results of my 1 year post surgery colonoscopy show no colon cancer. Unfortunately, the results of my 1 year post surgery contrasting CT scan show that the ovarian cancer has recurred. I’m somewhere between relieved and sad because now the waiting is over, but I can't find a single reason to continue treatment. As I understand it, once you have recurred there is no longer any hope of a “cure” and even the women that DO decide to treat a recurrence only last about year (give or take a few months) assuming the treatment works and she can withstand it. I don't have a reason to fight. No family since my teens, not married, no kids, I don't even have a cat anymore. My Quincy died in July. Before cancer I was a full-time student so even my "friends" were really just schoolmates and usually half my age. I wasn't in a relationship when I got into school and wasn't about to date anyone young enough to be my son, so even men went on the back burner. I figured once school ended I would start a new life, with a new career, in a new city, hopefully in a new relationship! But as Beatle John said, "Life is what happens while you're busy making other plans." I was in the hospital on graduation day. I went from all things school to all things cancer and (excepting the heavenly father) I have done it ALONE! In the beginning doctors and nurses couldn't believe I didn't have anyone to call – that cared whether I lived or died. They kept insisting there had to be SOMEONE. But there wasn’t. In an effort to get everyone to relent, I finally reached out to a few people I really barely knew, were not close to, but knew “liked” me enough to make an appearance. I think out of shear shock, fear that it just as easily could’ve been them, and relief that it wasn’t, those few showed up… sort of… for a while. I compare it to "The Bystander Effect." When people see something awful happen in front of them everyone assumes that someone else is going to do something about it so they don’t. I think everyone assumed that I must have someone that was going to help me through cancer so they faded into the background before disappearing completely. A couple of people hung in there for about 5 months but vanished with the reappearance of my hair! I guess that was proof I was back to normal. This past September I joined the Livestrong program through the YMCA. It's a program to help cancer patients get back in shape after surgery & chemo. Through my own workouts and doing the program my strength and energy finally started to reemerge and for the first time since June 2017, I was starting to imagine a future, using that hard-earned LMSW, I could work with cancer patients, I could start dating again, maybe there was life beyond cancer! But death was always lurking close by. A grim reminder that, as a Livestrong friend said, “It’s just a matter of time before OUR number comes up.” I was at the infusion center to have one of my 3 month CA125’s done and I see a guy I knew. I hoped he was there with someone else and not for himself but I found him hooked up to an IV receiving chemo for stomach cancer. Then another friend who I met during chemo let me know he was going in the hospital to have his bone marrow transplants and treatment, but he was so sick and seriously immuno-compromised he couldn’t even have visitors during a 29 days stay! And hardest of all my ovarian cancer friend: beautiful, in great shape, normal weight, eats a plant-based diet, and always looks like she just came back from a fun-in-the-sun vacation. She is dying. We were diagnosed at the same time, same stage, same age, had the same treatment protocol, but at last communication she had a CA125 of over 14,000 to my 12! I didn’t even know it could go that high! In our last conversation she talked about her death, and her body after death, sharing all the morbid details of the various methods of burial, cremation, and disposal! I listened with growing horror at the awareness she was talking about HERSELF! She was going to be gone soon. I listened knowing that in a few weeks I might be facing that same reality. I felt guilty for being healthy when she wasn't! I felt afraid that even if my scan results were good, that it didn't mean anything more than for now. Statistically, I was going to recur, just like most of the women on this site, just like my friend, just like another friend I met in chemo who is already gone. She has dropped off the map. For all I know she is gone now too. Just 2 months ago we were chatting it up in the swimming pool at the “Y” and me marveling that someone with such a deadly cancer could look so good, and healthy, and alive! I've forced myself to keep pushing forward, finally allowing myself to feel better, imagining a life beyond this terrible disease. But it was pointless wasn’t it? Because at the very moment I was coming back to life my number came, and there will be someone after me, and someone after her, and on and on it will go until someday there is a cure, a livable treatment, or we’re ALL gone. Thanksgiving was yesterday. “Thankfully,” my roommate was out, and I needed some time alone to cry and let the bad news sink in. As the day wore on I realized not a single soul reached out just to wish me a nice holiday let alone ask me about the results of my scan. People knew, but not one remembered. I don't want to die, and frankly I feel afraid and unprepared, but I also feel defeated, and resigned to doing just that. My doctor warned that if I don't continue treatment it won't be pleasant. From everything I've read it's not going to be pleasant even if I DO continue treatment. She wants to do more carboplatin with the drug Doxil which just sounds horrific. She said it's better tolerated than Taxol, but it doesn't sound that way to me, and she said I won't lose my hair again which is actually not true and I'm wondering why she would have told me that. The truth is I just want to be done with it. Before, there was the hope of a “cure” and the possibility of a future, but now there is just the prolonging of the present - an empty life where my main function is to try to stay afloat on $750 a month. One glaring difference exists between me and every single cancer patient I’ve come across on My Ovacome, in the Livestrong program, even on television!… everyone always has someone. I will be the first to admit I don't necessarily think having people that love and care about you – people that YOU love and care about – makes things easier and maybe even makes it harder in some ways. I don't have to worry about all the things the rest of you have to worry about in terms of end-of life matters, but if I did, well, at least there would be a reason to keep on keeping on. So that’s it. I welcome all perspectives, insights, experience, truths, opinions, suggestions, whatever. I have a return visit this coming Tuesday where I have to tell them what I’ve decided, and there will be no going back as the cancer progresses, so please, if you’ve got something to offer, let me hear it NOW. I know I don't post much, but I read it all, and a night doesn't pass where I don't pray for every single one of you!
It's back.: First, the good news: The results of... - My Ovacome
It's back.
Hi Cyndie, I am so sorry to hear that you've recurred, and that pain, and hopelessness you're feeling now is very raw still. But that's not the true you. There is still a fighter in there, and I personally believe that you deserve to keep on fighting this thing. You're still quite young, and pretty too, if you don't mind me saying.
Right now, my mom is possibly on her second recurrence, and I'm very scared about the possibility that she may run out of options that would work for her. But from reading this site, I know that there are so many ladies here that have had treatments work, and not just work, there are some who have gone well over 10 years without recurring again. That gives me, and I'm sure many people here, hope.
Let me leave you with one more thing:
"...no one knows the future not even the doctors treating me and, thankfully, they have even said that to me. I know that everyone is different and responds differently to different things. I guess part of me also feels like when it's your time it's your time, no matter what. I hope and pray my time still has some years left on the clock!"
Those were your words from a year ago. You said it perfectly yourself, no one knows the future, and everyone responds differently. There is still reason to be hopeful. A recurrence is certainly not a "death sentence". There are so many different combinations, and new trials coming out all the time, and many are working, and people are living longer than they have been in the past.
None of us can truly make up your mind for you. You've faced a lot of this alone, and that perhaps, makes you even stronger than many people here that have had a bigger support group. Whatever you decide, just know you'll have support on here, and people out there that do care about you.
-Michael
For being the first to respond, for such a thoughtful and sincere expression of your sentiments, for feeding my own words back to me, for promising support no matter what I decide, and for understanding that this hard stuff... thank you, thank you, thank you! I realize that the info on here is not in sync with what my doctors have told me or what I've read, but the consensus on Ovacome seems clear... as you said, "A recurrence is certainly not a "death sentence"." If that is indeed the case, then I will continue to fight, even if I have to go it alone. If for no other reason then for the hope that I will live long enough to turn that around. And, by the way, NEVER apologize for telling me I'm pretty because, no, I don't mind... at all! MANY, MANY HUGS!
...Cyndie
Hello CynD
Sending you a hug xx
I want to wrap my arms around you and give you a hug . I won’t pretend I could do this on my own but you have to try . I was told I had recurred in May and have just completed my sixth Carbo / Doxil ( Caelyx) , it’s not so bad , different side effects to front line ( Carbo/ Taxol) not worse than . AND I have kept all the chemo curls I acquired after I lost all my hair last year . Side effects are a bit of nausea , mouth ulcers and skin irritation but there is a tablet/ mouthwash / cream for each so it’s bearable . Please speak to your CNS to see if she can help you . I have to say when my MIL was told I had recurred she told my husband , she’s got a year then , I was furious and if anything is going to make
me live longer it’s to prove her wrong . At 63 I have even booked Glastonbury for next year and that will be over the year . Have rants if you need to on here , someone will be on most of the day / night and will listen . I hope you find your way through this like we all have to , much love and that big hug Julia xx
Thank you Julia! I hadn't heard the term "chemo curls" before now but I like it and boy-oh-boy do I have them! In the beginning it was awful, but it's finally starting to look sort of normal. I think a year from now I'd probably love those curls, and I'd have enough hair to style and color it. Mine came back grey even though I wasn't grey before! Truth be told I've always been good at "alone," but cancer has challenged that status in a way I never counted on and I'm almost desperate to have someone to live for or something I can believe in enough to keep me fighting. There are a lot of things I want and dream about and imagine myself doing, but none of it seems enough to withstand more chemo on the off-chance it might buy me a little more time. I don't need a little more time. i want it, but there's nothing I need it for. The story about your MIL is a perfect example of how important it is to not be alone and to have people in your life - even it's just that their presence challenges you to work all the harder to prove them wrong! I have to admit that it frightens me a bit how alone I really am. How did I get here? Why? It seems inconsistent with who I am. I try to do for others what I hope they will do for me, but it doesn't seem to work out that way. And the people I meet and the new friends I think I've made just never quite seem to solidify. I think people are very wrapped up in their own lives and it's hard to bring new people in, particularly when they might die on you. I've met several good people since cancer - new friends, I thought. But every last one of them disappeared. Even the ones I went out of my way to accommodate when they cancelled, or didn't show up at all. I gave them the benefit of the doubt, swallowed my dignity, and still got nothing from them. I don't claim to understand it, but I understand that it is what it is. I start each day, spend each day, and end each day, ALONE. It doesn't matter how well or how sick I am,it doesn't change a thing. Then I got told the cancer is back, and I looked ahead toward more of those same kind of days with renewed fatigue and God-only-knows what new or worsened side effects on top of it all, and the choice seemed clear - It's time to stop. This is not a life worth living. I have not decided what I'm going to do,, and i know time is of the essence if I decide to keep fighting, but everything is kind of blur right now. Thank you for virtually wrapping your arms around me and giving me that big hug. I promise I felt it!
...Cyndie
Hi Cyndie, Woke up looking like Side Show Bob this morning , think I need a haircut . Hopefully all the curls won’t go as I have completely embraced the curls . ( was ginger and grey now browny grey ) Whereabouts in the states are you , do you have support nurses and places you can go out there?.I am glad you haven’t made any decisions as yet so please grab any support you can from any source .The big thing for me is being able to vent and ask things on this forum , things I couldn’t say to my family only the people going through things on here would understand .I read more than I write and I have seen posts from people who are having the same issues with their other half not being able to cope , sometimes I feel like screaming I have Cancer and I am not going to get better .I feel happier in the knowledge that other people share my issues and you will find posts that share yours . Sending more hugs today , I know you will do what’s right for you , it’s all any of us can do . XxJuliaxx
Hahaha! And I looked like Marge Simpson. Thanks for sharing again. I'm about to do a long post. I hope it doesn't piss anyone off because that sure isn't my intent, but I still feel like on some level I'm not getting got. I don't think people really understand the difference between my "alone" and their "alone." It's not like one is better or worse than the other, but they are DIFFERENT and I don't like feeling like I'm being lumped into a circumstance that everyone assumes we are all dealing with. We AREN'T. I don't know. Maybe I'm beating a dead horse about something that just doesn't really matter. I don't know much right now. I'm in Austin, Texas. I make use of the support I have which ain't much. Thanks for making me smile!
Oh Cyndie, I'm so sorry to hear that you haven't had better news. I can understand why you are feeling so down, and would like to send you hugs.
I know it's very scary having a recurrence, not least because having one recurrence means others are likely to follow. I think your statistics may be somewhat out of date, though, as there are many people posting on this site who have survived a lot longer than 1 year following recurrence. What type of ovarian cancer do you have, and what stage and grade was it at diagnosis? Have you been tested for Lynch syndrome or BRCA mutations? Either of those may open up treatment opportunities for you. While it's true that Doxil might make you lose your hair, it sounds as though that's pretty unusual - Doxil is usually known as caelyx here in the UK, if you want to look for other people's experience with it on this site.
Last but not least, I wish you a belated happy thanksgiving!
Best wishes (and hugs),
Barbara
Hi Barbara, and thank you! For the info, for the hugs, and for the happy Thanksgiving. I'm stage 3c, high grade, serous carcinoma, epithelial OC, chemo, surgery, chemo, BRCA 1 & 2 negative. My genetic testing came back as normal which means I showed no predisposition of cancer then was diagnosed with 2 of them at the same time! You are right that what I was told by my doc, what I've read in the research, and what the women here are reporting don't seem to match up. The big questions at this point are, now that I know the cancer is back, is my life, as is, worth fighting for? Am I willing to endure more chemo on the chance it might buy me enough time to have a life that is less alone, and is that something that I can even truly control? Hugs right back atcha!!
...Cyndie
Hi Cyndie, I know, it's just Scary, but we are all Praying for You! I was diagnosed with Stage 4 OC in February this year, carbo/taxol didnt work, so I went on carbo/caelyx, shrunk 88% of tumour, still a bit left after last scan, but feeling really well, and if I get any pain/symptoms I'll be having radiotherapy, so, I'm just living my life, everyone reacts differently with a different story! Plus there are more discoveries being made all the time! You Can Do This! Godspeed! Dawn!xx🌻🌺🌻😀
Hi Dawn! Yes, Godspeed - however it's going to go. I read some of your posts and I wanted to say something about the one about eating sugar. I asked my colon cancer oncologist if my diet caused my cancer and if changing it would help because I'd read that cancer feeds off of glucose (sugar) and protein. He kind of laughed and assured me that nothing I'd done had caused me to have colon cancer, then he informed me that pretty much everything we put in our mouths is made up of or turns into glucose and protein. He added that the only truly known causes of cancer - ANY type of cancer - are: genetics, toxic environment (bad air quality) and smoking. Sugar substitutes, Teflon, plastics, none of that stuff has been proven conclusively in humans. I have a friend with stage 4 OC and she does all the things people swear will keep you cancer-free or cure it if you have it. She eats plant-based and she is dying. I say eat what you want, what your body is telling you it needs, and with all things balance (if possible). Life is short, food is good, "mangia!" Thank you for sharing your story with me. Like pretty much every woman on here you possess that amazing attitude and positivity that never fails to inspire. There are so many women on here in various stages of struggle with this disease. Part of me feels a little guilty for even considering giving up the ghost. But we all have different circumstances, different propensities, different access. The side-effects from chemo have really damaged me and I don't know that I want to go through that again, especially when my doctor made it sound like it wasn't really going to buy me much time. But that seems in direct conflict with most of what I've read on here. I don't want to die, but it's something I know I have to face sooner or later. The way I feel about the world in general these days and my place in it makes me think maybe the time is now. Then again it seems unreal to even commit those words to paper! I don't know what I'm doing, but thank you for trying to help me figure it out. Bless you! Huge Hug!
...Cyndie
I don’t think making a decision for treatment based on who is or is not around to be left behind is actually relevant. We are all individual and although nice to think someone is waiting to catch us when we fall, life is actually about one life at this moment in time. What makes you wake up everyday? Why do you brew your tea or grind your coffee? Why shower or dress? Why see the oncologist? Because you are caring for the most important person in your life. You. You wouldn’t post here or take time to weigh the odds of deep down you didn’t believe you matter.
So from my perspective you won’t find me singing praises of chemo, chasing down yet another treatment that may or may not be clutching at straws along with a hefty glug of side effects to wreck my immune system.
In reality we are all different so one person may have 2 years remission and someone else 12. Yet it seems and you won’t find many who disagree, once you recur the likelihood is you will again. It’s when
We are all living with the niggle of OC playing the tune that we have to dance to but it doesn’t rule us
What do you want? For you? If you had the biggest family in the world that question would still be the same
LA xx
Lily-Anne, your remarkable insight has gotten me through many a dark, hopeless night. We will never meet but you have lifted me profoundly with only your words.
Hello Lily-Anne:
I've followed your journey and have done a lot of praying and crying for the relentless barrage of seemingly unbearable medical challenges you have faced. I have also gathered strength from your ability and willingness to persevere. I know it's my life that is on the line here and that it's me I need to care about, and I have, and still do. But my being is directly tied to people and world around me. It can't be enough for me to fight solely for myself unless I know it can result in my ability to help others. I desperately want a cat, but I can't bring myself to bring a living creature into my world when I can't guarantee I will be able to continue to care for it. I want to do "The Way" (El Camino de Santiago) but I'm not up to it physically, can't afford it, don't have a passport. and not sure I can get one. I want to sell everything I own, modify a Honda Element for camping, get in it and go and keep going until it's all over... hopefully in some beautiful spot in the middle of nowhere. I want to get my studio wired back up and get back to my music but I can't do that on my own anymore and I don't have the money to hire someone with the expertise I need to preserve all the music I've written recorded. I could go on and on about what I want, and what would make me happy, but even if you told me I could have it all this very moment I know that, alone, they would be nothing more than distractions. I've done alone. I'm good at it. What I want and what I need most here and now is NOT to be, and sadly, whether or not I continue to be is not solely up to me. There is something I want that I think I should try and stick around for - I want to use my Master of Social Work. I even got licensed between chemo treatments and how I passed I'll never know. But I did, and I want to work in my field. Initially, I wanted to work with veterans, but since I've spent the last year or so getting specialized training in what it's like to have cancer, THAT is the population I want to work with now! It's evermore apparent how few resources there are (at least here in Austin, TX) to meet the mental and emotional needs of people like us. I have something to bring to the table other therapists don't. We'll see. Thank you for taking the time to respond. Wishing you love, peace, happiness and health ALWAYS!
...Cyndie
Sending a virtual hug ❤️
Hi Cyndie
It sucks that the beast has returned and that you feel like there’s no point in fighting it. You know I completely understand that emotion- it means you’re taking control by making that decision. However, there is no way you can know what’s down the line, or how you’ll respond to treatment. I’ve taken massive inspiration from the lovely ladies in here, who fight with every fibre of their being. There are ladies on here who are 20 years post diagnosis who have had recurrence but are still here. How inspirational are they!
I hope you’ll have a rethink once you’ve had time to digest the news and importantly discussed your options with your oncologist.
Sending you hugs and positive thoughts.
Joy 💕
Joy!
Thank you for acknowledging that even a decision to NOT continue treatment is still me taking control of my life and not necessarily a sign of resolve. I see the irony in making a life choice to die, but I'm not choosing death, I guess I'm just trying to decide when. You are right that the women on here on an inspiration and that's why I come here with the big stuff. I know there will be no BS, no pulled-punches, a wealth of information and lots of love and support from the women living through the the same difficulties and dilemmas we all face. I know this is not a decision anyone can make for me, nor is it one I will make without feeling like I have all the information I need. I guess I want it to be simple. I want someone(s) around to give me a reason to keep on keeping on. I need to be needed. I need to know it matters if I'm here or not. I don't know that anymore, and, in fact, I feel pretty sure that I don't really serve any purpose - something I feel I have to do. I'm taking those hugs and positive thoughts and I'm hanging on to them for Thursday! Oh, okay, I'm gonna dip in and use a little before then. Somehow I feel you sent along enough to cover me! SMILES!
...Cyndie
Oh this is so sad,to be so alone, I hope you will get comfort from this site,I wish I could give you a hug,try not to give up,I know everything seems hopeless now, hopefully you will get a lot of messages from people who have come through a recurrence of this nasty cancer,as it plays with your mind and you need some positivety too get you through,xxx
Such a lovely message! I wish you could give me a hug, too! I'm not really toying with giving up as much as I am trying to make a choice about what happens next. Chemo did a ton of damage to me. I don't know if I could withstand more, or if I'm even willing to try, especially if I'm looking at months of worsened or new side-effects just to have a few months of life that I could've already had while I was feeling good. I'm realizing from people's responses that the expression of "alone" is kind of up for grabs. When I say I am alone I am being literal and I am being honest. What I am not being is a victim, and I am not saying that I am "lonely" The facts are I do not have friends or family or anyone who is there for me on this journey. I'm on this path alone but for Ovacome and seeing a counselor once a week. I often feel like my being is not only pointless but wasteful. I'm taking up space and resources and for what? To keep a late stage, 2 primary cancers patient alive so she can continue to be alone? It just doesn't make sense to me. I've got a lot to consider and this isn't like buying something I can return if have a change of heart. This is scary stuff and right now "alone" is just SO hard. Thanks for being there. I wish I could give YOU a hug!
...Cyndie
I am sorry you are suffering without support but this disease means we all fight it alone in our heads however many people we have around us giving us their advice. It is our bodies and its still a lonely place in our heads. This is a lovely sight where similar sufferers who do understand are th e re for you take heart from their support. So pleased you co u l d share h o w you feel on here just putting in writing will hopefully get some of the negative thoughts out of your head. I have found h e l.p. and support both medically and support wise in the local hospice day care got so many hints for coping with side effects. Made friends w h o say we all belong to a club we did not want to join and that's the same with this online. Keep positive and share here. I admire you posting and send you love and hugs from a stage 4 b ovarian cancer sufferer.
Hello my OC sister!
I know it feels like we are all fighting this disease alone, indeed it often feels like a very solitary journey, but feeling alone when you are not is not the same as feeling alone because you are. One involves the presence of other humans and even precious pets, one does not. Having witnessed the first and lived the later I can say that both are fraught with great difficulty, for different reasons, when you are looking your own mortality straight in the eye! Ultimately, the choices about our cancer belong to us, but be assured they are influenced by our respective worlds, whatever that looks like, in the near and far. I needed a little hope after hearing the news and I found it here with you and the others who have been so kind and generous with their thoughts and experiences. No one wants to die and that VERY much includes me, but if more chemo means a continuation of my present with little hope of much beyond that then it only makes sense to me to choose my time sooner rather than later - especially because I am alone. I don't think I can do it again. Not alone. I don't think I want to. Of course what I hope for is to be convinced that there IS life beyond a recurrence and this line of treatment is doable - even now, even alone. The women here swear by it, but my doctor does not, and even the research doesn't support it. I need less conflicting information about recurrence. Honestly, I just wish I could blank out cancer for a solid week so I could get my bearings. Everything seems harder over the holidays and being alone over them always makes me feel lonely on top of alone. I am so grateful for your love and support and I want to return the same to you a hundred fold. Prayers and love always from me & 3c!
...Cyndie
Sorry you're facing a recurrence, Cyndie. Happy thanksgiving (albeit belatedly)!
I guess the question you might want to ask yourself is 'What have I got to lose?' by choosing treatment and a chance of more life, with or without family or the classic friend.
If you do nothing, you might get to experience the possibly rather unpleasant end of a cancer journey sooner rather than later. Could be more unpleasant than the chemo, for sure. Not something I personally have the guts to face anytime soon, to be honest.
If you choose treatment, you have a chance at falling onto the good side of statistics. Maybe you won't mind the side effects much, maybe treatment will give you a prolonged time to keep living and going after a job, (re-?)joining the support network - which I find a smart move - or even meeting a worthwhile fella. It is YOUR CHOICE, what you do from here. If it becomes unbearable (moreso than dying.... hark at the black humour, uh oh), you can pull the line anytime and let the disease run its course.
But it'd be a bit of a pity, not taking the chance for good things to happen, wouldn't it?
I wish you the best with your decision. This disease is no pushover, and I've just come through a recurrence myself, now facing an increasingly nasty new boss at work and the question whether I should not rather resign and enjoy whatever time OC allows me still.
All the best and if you like sticking around in this community, I dare say it's not true to think you have no friends at all. Xx. Maus
Maus! Wow! You've no idea how much I appreciate you message. It appeals to me on a level where I am struck by it's realism, kindness, sensibility, authenticity, and simple clarity. You suggest in a way that is so absolutely understandable. It's like finding something grab onto when you're slipping down the side of a mountain! You are right about one of the questions I might and have asked myself, "What have I got to lose?" In terms of the unrelenting side-effects of chemo that have so dramatically changed my world, the answer is MUCH. Perhaps too much. By choosing treatment I fear I will find myself with even LESS life. Maybe more time, but with less ability to enjoy and without family or the classic friend to help me survive it, I'm not sure I could do it again. My side-effects have never subsided. In fact, most have progressed and my world has gotten smaller and smaller as a result. Lately "alone" has grown to include "lonely." I suspect that's also the effects of the holidays on the heels of news of a recurrence.
If I do nothing, my doctor assures me I will experience the unpleasant effects of dying from ovarian cancer and it will most certainly be worse than the chemo, but it will have beginning, a middle and and end, and when it stops, so will alone, lonely, worry, boredom, hopelessness, trying to keep a flatmate, trying to make bills, witnessing the destruction of my country under the evil dictator in charge, and every single other thing that is hard and sad - a growing list, I assure you. I don't know if I have the guts to face it either. I've never died before and I have no idea how it's done, ESPECIALLY if you are alone. I've never seen anyone die alone, but I know it happens all the time.
On some level continuing chemo feels more like a continuation of dying rather than living. I don't know. Depends on the day.
It's true that if I choose treatment, I have a chance at "falling onto the good side of statistics" and the hope and possiblities there are pretty damn inviting! Maybe I won't mind the side effects, maybe treatment will give me more time to live (although life as is doesn't feel like something I'm anxious to prolong or willing to fight for), but going after a job in my field holds a lot of promise for me because I desperately need to be a part of something that gives my life meaning and purpose. As for the man thing, physically I'm not sure if have anything going on enough to attract a worthwhile fella. I still FEELl like me - maybe even a BETTER me in some ways, but I don't look like me anymore. I look old, fat and tired with short, grey, ridiculously curly hair. Just before cancer I looked younger than my age, healthy, rested with long dark locks. I knew I could have a guy if I wanted one. Now, I kinda think not, and not entirely I even want one beyond back rubs, being held and any heavy lifting. I'm not sure what you mean about re-joining the support network. Do you mean here? Do you mean coming her more than I do? I know I only seem to come here when things have hit the wall in my life. On one hand I am absolutely dazzled by the this place where all these amazing women come to share, advise, love and support one another - always welcoming a newcomer like an old friend. But these are the very things that makes it unbearable for me other times. I know their plight - first hand! It's cruel and unfair and heartbreaking that anyone of you should faced with so much pain and suffering! Sometime I just have to look away because it's just too much to bare. You are absolutely right that if chemo turns into a nightmare I CAN pull the line anytime and let the disease run its course.
But will I be well enough to put my affairs in order and take care of the life I've been in? No. Right now I could. Right now I am well enough to wrap up all up. It's so strange to even think about it. When you are alone you don't think about things like wills, or who your crap is going to go to, the people you'll leave behind and what that's going to mean to their lives. I guess I can try and sell what I can, donate the rest, burn some of it, and then find something I care about to donate the proceeds to. Not sure WHERE I'll die or what happens to me after I do. It kind of freaks me out to be honest. I had the worst experience of my life in the hospital I had entrusted with my care to and the idea of ending my life there and possibly encountering similar treatment at the end of my life is absolutely terrifying! Hospice seems grim. Can't I just go somewhere lovely and quiet until I eventually... stop? In my last conversation with my friend Terri, who is dying of OC, I listened as she detailed every possible method of dealing with her body after death. It's hard to describe the glut of feelings and rush of emotions I had about being on the other end of the phone to that conversation.
I wish you the absolute best with your recurrence, Maus. You said a mouthful when you said, "this disease is no pushover." If you can skinny by financially, I say give the boot to the increasingly nasty new boss at work. LIFE IS SHORT! Too short to spend it living in ways we don't want or absolutely have to.
I WILL stick around in this community. I've told an awful lot of people about it and heaped so much praise on it you'd think I was getting a commission for everyone who joins! i know the importance of this place, but it's kind of the unbearable lightness of being - so exquisitely beautiful and difficult to look straight into all in the same breath! Thank you for being my friend. Love and hugs!
...Cyndie
Cheers for your good wishes Cyndie. You've got some of the same questions I do, and I don't know the answers either I'm afraid.
The most elusive concept seems to be recognizing whether a particular course of action is the best one, is 'worth it', or not. Maybe the best decision is the one that feels the least wrong to you on a gut level, regardless of other opinions and inputs?
You could even consider getting a second look at a hospice in your area. It might have more of a 'safe haven' vibe than anticipated.
Need to dash off to a doctors appointment (in preparation for the next Avastin infusion). So far, my own treatment has been quite bearable or I wouldn't have done it. Although the lasting chemo/treatment effects are somewhat annoying (blaming it conveniently for my short hair, shuffling gait and lack of energy; unfortunately can't blame it for the massive weight gain after diagnosis.. think that's still down to me stuffing myself, uhm.. but I understand your qualms about your new body image, I do).
Hang in there for now. Xx. Maus
NB: By support network I meant the Livestrong program through the YMCA.
I agree with all of the above and also PLEASE don’t miss the opportunity to use that LMSW. There r so few out there who have the depth of profundity that your writing reflects. The honesty is rare. Your experience could change one other life and maybe many more. As long as we r alive there is hope. Not for a particular outcome but for possibility and capacity to live and learn thru all things. My thoughts were similar to yours at different points but I have found that there r some benefits to the options. That became very clear when I began to have some cancer related pain that I hadn’t had and notice a difference almost immediately.
The profession needs u.
Keep us posted.
We r here for u tho not in the flesh.
Lovely Joy! You flatter me! And you know what? I'll take it! You've also hit on the one thing that does matter and seems like a reasonable possibility - working in my field - using that LMSW. School stopped a year and a half ago and I was licensed between chemos less than a year ago so it seems a shame to let it all go. And when I feel like I'm so far from the things I worked so hard for, I realize I can just think it as having used all this time to gather additional training for what could now qualify as my specialty - working with cancer patients! I have new skills and so many new awarenesses to bring my work since cancer. If I thought it could happen, it would be a reason to face more chemo. I can't even tell you how much I need to feel like I am a part of something that is good and that matters rather than just taking up space. I've always been good at "alone," I guess because I've had a lot of practice from early on. And really, "alone" wasn't such a bad thing. I think it made me feel like I had control over my life because it meant I didn't have to consult with others about anything if I didn't want to ... the trade-off for what was missing, perhaps. But since cancer, "alone" has become frighteningly alone, and lately it's included "lonely" as well. Also, I've gotten older and wiser along the way and by the time I figured a few things out about me and the way I was living life, "Alone" had become less of a choice and more of a circumstance - one I always thought I'd have the opportunity to change. A bitter pill to swallow (If you'll pardon the cancer analogy!) You know, I just realized something. Since my diagnosis, I think I've always thought of myself as someone living with cancer. When the doctor told me it had recurred, for the first time in all of this, I felt like I was dying from it. That's a huge distinction and one that has no doubt colored my response to everything. I don't know if it's time to just let go, or do just the opposite and kick everything into high gear to fight it. Things are different now - I'M different now. I'm tired and I'm tired of facing everything alone, but I'd be lying if I didn't also say that it's my nature to always want to fight the good fight. That's why I chose social work! Thank you for hearing me and understanding, for every thoughtful word, sharing your experience, and being there. HUGS ALL AROUND!!
...Cyndie
I remember the depression I felt when I was first told I had a recurrence, a couple of years after initial surgery. Everything seemed hopeless. I had a family, but I thought that made me feel worse because I was very concerned about the effect my illness was having on them. I was first diagnosed in 2008, & that recurrence happened in 2010. I have recurred again since, but I'm still alive & I'm feeling well. I know some people don't live long after cancer, but my point is that there are plenty of us around who continue to live for a number of years with & after cancer & its treatment. We can make ourselves depressed by looking at statistics. None of us is a statistic, we are all individuals, who may continue to live for a short time or a long time. I'm certainly glad I had treatment. I have another recurrence now, but am not ready to give up yet, so am looking for the best ways forward in treatment & living. No-one wants to need & have cancer treatment, & some people have a bigger problem from side effects than others, but if treatment can help, please consider giving it a try. Di
Wow, Di! It would have been a big blow to find out about a recurrence at the very point my doctors told me represented a dramatic shift statistically. I was told if I could make it 2 years without a recurrence, statistically my chance of survival would GREATLY improve. To have gotten this news at the point that you did might've felt like a cruel joke. Then again, maybe it would've bought me more time to have created a life that would help me deal with it. I think it would be unimaginably hard to have cancer and have family. How do you tell a husband, or leave behind children, or manage the grief of knowing that your cancer has increased their grief? I've often thought that being alone in the world, in many ways, made it easier for me. But I know we can't compare hurts in life, or life with cancer. There's always someone who has it worse.
So, unfortunately, I'm one of those people who was ravaged by chemo. Probably nothing most of you haven't experienced, it's just that my side effects have hung on and even worsened. This is probably the main reason I hesitate to go through chemo again - that and the aloneness - so I've been leaning toward just calling it a day. I'm not serving any purpose, I won't be missed, so why keep beating my head against the wall? I know how that sound - that it smacks of victimization - but I REALLY don't mean it in that way. I mean it as the unvarnished truth of things as they stand. I'm NOT contributing, and if I dropped dead today I shutter to think how long it would be before anyone knew it! It just is what it is. It doesn't mean boo-hoo, no one likes me. People DO like me. I just wish they'd take a little time to show it in the ways that matter to someone with cancer. Thanks for sharing your experience and you have my word I will consider ALL my options. Sending you every good thought and helpful prayer!
...Cyndie
Your post made me reflect on things that sustain us in difficult times. For me I get pleasure gardening, nurturing plants and watching the changing seasons. The full cycle of life can be seen. Sometimes things seem to be not thriving but then spring to life. I also love watching sunrises and sunsets, rainbows, summer rains, frosts and seas. I feed the birds in my garden and have some regular visitors. Squirrels, other people’s cats and foxes. I like walking when I feel up to it.
Yes it’s good to share these experiences but if it’s only me it calms me and allows me to reflect on what is good around me. Brief conversations with complete strangers who don’t know of my cancer history and a lovely cup of coffee can finish a perfect day.
Too idyllic? Well maybe and I do have days when I sink into the blackness and desperation. I’d love to get a pet but cats, dogs or rabbits are no good as my husband has allergies to them! Not into reptiles!
Hang on in there! You have lots to offer I’m sure. How about some voluntary work? I do mine at a local theatre. I meet people, enjoy the occasional play or show. It gets me out and about. Yes I do have family but they have their own paths to follow and I do feel lonely at times. Strange how you can feel lonely in a crowd isn’t it?
Keep searching for the things that matter to you. Look after yourself and I hope you make a decision that best suits you.
Cheryl
Not too idyllic at all, Cheryl. In fact, what you have described are the VERY things that sustain me. Sometimes, however, they also remind me that I am too often an observer of life rather than a participant. And there are days when I have a real problem with sitting on the climate controlled side of the window looking out onto life with a cup of hot coffee in my hand after having read about some new atrocity that I'm doing nothing to effect the outcome of. My social work training has taught me to reframe that into realizing how lucky I am to have the time to do this while so many others are longing for just 5 minutes of what I now have in abundance. And I am grateful for it... I really am. But I also feel like I am skating by - like I should be out there, doing something, contributing. At the very least I should be sharing those moments with someone. Much of the time I feel like I'm ticking down life with the growing awareness that once I'm gone no one will even know it happened. It makes me feel guilty - like I am wasting so much - an education, the benefit of my experience, the music I've written, even the love and commitment I think I'm capable of. Life is no good alone, at least not anymore. I need to have a reason to be here, a reason to keep up the fight, something besides preserving my ability to witness the pain and beauty in the world and have it go unshared. I have all kinds of hopes for what could be, but they come in the face of what's more likely and the two seem at opposite ends of the spectrum. Thank you for your lovely response!
...Cyndie
Dear Cyndy,
Your writing is wonderful and you should be doing more of it!
That means living longer and forcing yourself to write every day.
You obviously have talent and intelligence and perhaps you have insights to share, childhood stories,
your experience on life as a single woman in the USA, whatever. Just write.
In other news,
NO! Recurrence is not a death sentence. Most of us with Ovarian Cancer were told from the beginning that we could not be cured, BUT, a lot of us are living longer and longer.
Some of us on this site are 11 to 20 years since first recurrence!
A lot of us are working full time.
A lot of us are doing volunteer work. And many have become world travelers!
You will get treatment!
Doxil (Caelyx) IS an easier regime when combined with Carboplatin.
I don’t know why, but that’s how it works.
I am on it right now, and totally taken aback at how much easier it is!
Four weeks in, my hair shows no sign of fleeing!
So, let us know if you have had the BRCA mutation test, as being positive to this mutation gives you an edge on defeating the cancer that it causes!
On Carbo/ Doxil, you will be able to attend classes, drive a car, eat! And exercise again! I couldn’t believe myself, but it’s true. No chemo fog, taste buds normal, no bone pain and so much more on this regimen.
Your first week after infusion is still rough, but as soon as you make it past the seventh day, you suddenly feel normal again!
So definitely start treatment as soon as possible.
Meanwhile, where do you live in the USA?
I have family in Los Angeles.
And finally, start writing. You have talent and you have time. Stay with your local support groups. Get back to the gym. Get back to class.
You are going to be all right. You are going to make new friends.
You are going to have a new life ahead of you - along with your new career.
Best wishes,
Laura
PS: I had my first recurrence recently and posted here under Caelyx/Carbo to find out what it would be like. Check it out to see other ladies experiences.
Dear Laura:
Thank you so much for all the info and I'm so glad you enjoyed my writing because I know I can go a bit long! I'm originally from Los Angeles, but I've been gone since about 2001 - first to Sarasota, Florida and now in Austin, Texas. Seriously, two of the LAST places I ever thought I'd find myself. It's funny, if you watch any of those investigative crime shows like Dateline, 48 Hrs., Snapped, etc. everything bad always happens in either Florida or Texas! 
Where is your family in LA? I was a "Valley Girl" like totally and fer sure! I'm negative for BRCA 1 & 2 so I know that means treatment won't be as effective for me. I will read the post from your first recurrence. Your response was so generous and reassuring. I wish I could just settle into something and go with it. The hardest part of all of this is the unknown: Is it back, is the treatment working, what if, what now, how do I do this? That last one is when I need someone live and in person. Not to solve it for me, but just to give me a much needed hug, or a well-timed phone call, or just some kind gesture to remind me that I'm not alone in this. Thank you for doing that from afar!
...Cyndie
Cyndie--must be so hard feeling as you do and its so good you posted here. I think you may be surprised with Carbo Doxil if you were willing to try--I did it when I relapsed and like Laura--was surprised how much easier I found it vs Carbo/Taxol. No hair loss either. Someone else had a 10 month remission on Carbo/Taxol then went on the Carbo Doxil with a 22 month remission. Then there are new things like PARPs---all to help prolong life and with quality. You only live once so why not give it a go and focus on those things you enjoy. You mentioned two "friends" with cancer and that you don't know if they are still around--that makes me think you have not reached out to them and perhaps being a support to them or others you meet on your treatment journey (you know how they feel more than others) will help you as well--I am sure it would help them. Giving sometimes is as nurturing as getting and since you know the feeling of not being reached out to, perhaps you doing the reaching out will give you a feeling of fulfillment you don't feel right now. As others have also said, there are many in treatment who have been around a very long time....so it sounds like its up to you as much as its up to the treatments, if you want to keep going. I hope you choose to keep going. oxoxoxxo Judy
Hello Judy!
All good to hear about Carbo Doxil. Terri had nothing good to say about the PARP she was on - Oliparib, I think. It has not prolonged her life and even took away from its quality.
I HAVE shifted my focus to the things I enjoy - within the confines of my circumstances, that is - but none of them are life-sustaining.
The two friends I mentioned were Leslie and Terri. Leslie stopped treatment and was dead in 4 months. Terri is dying despite trying EVERYTHING. She's dropped off the map twice now. The first time brought me to my breaking point. I couldn't stand another second of not knowing if she was okay, alive, dead, alone, suffering, or what! She'd given me just enough info in her last text to to me to panic me when, despite repeated attempts to be in touch with her, NOTHING came back. I literally quivered with relief when she finally called. We talked for about an hour and she told me everything, and gave me all the gory details, and all of it hard to hear because I care about her and hate that she is going through this. But there was no escaping the fact that there was only 3 short weeks between find out whether or not my own cancer had recurred. She offered to go to that appointment with me but she didn't and I've never heard from her again. I can't keep pushing for contact. Not this time. I pray she is well, I know she is not, I hope someone will get in touch with me if it gets really bad, or she dies. It's all pretty grim, but Terri has money, and family, and friends, and lots of help, She also had me but clearly that has not been important to her. Giving is MORE nurturing than getting and, since I DO know the feeling of not being reached out to I make a point to be the kind of friend I want people to be to me. Unfortunately, you can bring a horse to water, but you can't make it drink, and no one seems particularly thirsty for me. I try hard not to let it make me feel bad because I don't think it's me, I just think that people have a lot going on in their lives - especially if they're battling cancer too. Even the couple of friends that SHOULD be here, and don't really have any good excuses for not, are very wrapped up in their lives and the things they care about. Not that they don't care about me, but I don't fall on that part of the list near the top, and once my hair came back in they no doubt equated that with a return to normal. If they think about me, which I feel certain they do, I imagine them imagining me with hair that has gotten longer which absolves them from having to take things any further. Why no one picks up the phone, writes, or even offers up a lazy text full of little content and lots of emojis, I don't know. Still, somethow, I get it. I don't like it, but I get it.
I don't know what I'm going to do at this point, but I do know that the info on here doesn't jibe with what my doctor told me, what I've read, and what the research says. I feel like I'm ready to be done with life as it presently exists, but whether there's a reasonable chance that could change if I continue fight is the million dollar question, right?
Thanks for the encouragement! Hugs and kisses right back at you!
...Cyndie
I am so sorry--you did reach out and try and I should have known you would ---your personality comes through clearly here and you are a caring person....I understand the not getting it...I think we all think some of our friends/acquaintances act strangely around the cancer--either pretending it isn't there or not wanting to talk about it when you (I) are personally going through treatment or worry or whatever. I am so sorry you feel as you do and hope it is a "down" time where feeling more optimistic will also be part of the cycle. I want to tell you not to give up---keep fighting--but I know its such a personal choice and up to you and how you want to proceed. It won't be the first time the medical community tells you things that don't necessarily jive with what those with experience tell you so again I ask why not give it a go and stop if you find it intolerable. And are there any organizations with "buddy-type" systems (Church or otherwise) where you can be accompanied to treatment and have that person with you during? Not saying you need it, but it might help change your perspective. Just wish you felt better. Sending many hugs and hopes your way. oxoxoxox Judy
Cynd, do all you can for you! Put everything out in the universe. Set out with an attitude like a magnet. And attract caring people into your life! You really are stronger than YOU think. You are still here ! Love and hugs to you. Are you in the US? Get into a support group, get therapy and maybe an anti depressant. Call cancer care. They have phone therapist s who will give you six free phone therapy sessions. It may help. I send prayers and hugs to you.
Marioostsi!
Do all you can for yourself - CHECK!
Put everything out to the universe - CHECK! (And God!)
Set out with an attitude like a magnet - CHECK!
Attract caring people into your life! - CHECK!
You really are stronger than YOU think - CHECK! (I'm incredibly strong and I KNOW it!)
You are still here! - CHECK!
Are you in the US? - CHECK! (Austin, TX)
Get into a support group, get therapy and maybe an anti depressant - CHECK! CHECK! and NO THANK YOU!
Call cancer care - WILL DO!
Love, prayers, and hugs in abundance to you as well!
...Cyndie
I'm on my own too CynD and I get where you're coming from. I lost my beloved dog just before this started. I have no money, and yes I have dark days where I think no one would notice if I wasn't here but you're not trying to stay alive for other people's benefit - you're doing it for you. I can see you're a strong person - you've done all that studying and you've gone through the treatment so far on your own. The ladies in here have collectively had all the treatment on offer and very few , if any, have said any of it was totally impossible. Most seem to have found it 'doable' or ok. We all know it's a bugger of a thing that tends to come back, but there are folks in here who have been dealing with it for years and years! Who knows if you'll be one of those, or one of the people whose own immune system suddenly decides to kick in. And keep going long enough there's always the chance of a better treatment round the corner. Maybe it'll get us in the end but I personally want to be able to say well stuff it - I gave it my best shot. And I doubt the doctors would waste their time on us if they thought it was pointless. So until they say give up I think we should push on. And even if they do say give up I'd want a second, third and fourth opinion. I'm stubborn like that.
Plan what you can do - for you- if you nail the b'stard! I would really like another dog one day - I'm too scared for the future at the moment (if i had to go in hospital there's no one to take the dog) but who knows. And I'd like to travel. Yeah I know - no money - me neither - but you never know. I used to have a neighbour who was in her eighties and you wouldnt have looked twice at in the street. She had only her pension and she took in sewing repairs for other people. She told me she saved all the sewing money and had been around the world on it. She was always planning and saving for the next trip. And yes if the day ever comes that I can do that - I'll go on my own and send 'wish you were here ' postcards to 'friends' who never bothered to get in touch when I was ill.
Come on Cynd- go for it! You can do it and there are lots of new friends in here who will be right behind you. Much better than real life ones too as everyone in here has been there and got the t-shirt 
Lynn
x
Aww Lynn. Clearly we've been sharing a brain. Change the word "dog" to "cat" in this part and I could've written it myself
"Plan what you can do - for you- if you nail the b'stard! I would really like another dog one day - I'm too scared for the future at the moment (if i had to go in hospital there's no one to take the dog) but who knows. And I'd like to travel. Yeah I know - no money - me neither - but you never know... if the day ever comes that I can do that - I'll go on my own and send 'wish you were here ' postcards to 'friends' who never bothered to get in touch when I was ill.
"
I desperately want another cat, but I'm so afraid I won't be able to care for it. I been in the hospital and in and out of ER's so much since cancer, the stress of making sure Quincy was well cared for was immense! When he disappeared I wondered if maybe it was a sign that I wasn't going to be around to take care of him and so maybe he was better off somewhere else, but that if he came home maybe that meant I was going to be okay. (I know, I know, trying to ascribe meaning to a situation that made no sense), Then Quince came home, but he died 12 hours later. I was inconsolable, and I couldn't help but wonder what it meant.
Thank you for cheering me on, calling me "Cynd," (it's always the official "Cynthia" these days), and reminding me that I'm part of a club who members I am truly honored to be affiliated with - despite the reason for membership. I honestly don't know what I'm going to do, but it helps to know there are people out there that care and understand. MANY HUGS!
...Cyndie
Many hugs to you Cynd 🔆🔆🔆🔆
Thank you Seasun! Many hugs is good and I'll take every single one, but I'm happy to share!
...Cyndie
Hi CynD, reading your message made me feel so very sad and worried for you in equal measure so you are getting the message I would give to a very close friend.
Ultimately even if you have friends and loved ones around you this journey is something we all do alone.
The majority of us will have seen a dwindle in the number of supporters we have from diagnosis to completion of first line, second line happens and maybe people think it’s just your new norm.
Even if we are lucky enough to have friends and family around us there are very few I can be my true self around without the fear of scaring them off!
Ultimately though I do have people, it must be very difficult when you don’t for both practical and emotional support. Are there any support groups locally you can talk to about the way you are feeling?
You can get second line treatment and stop but you can’t not start second line treatment! That is just not an option for a woman who has fought her way back to health after first line. You are a fighter so bloody fight! You don’t know what’s round the corner, none of us do, but not being here to see is not an option.
I was so mixed up when I went into recurrence in February. I felt so down this from what I’ve read is absolutely normal. We are promised one get of out jail free card, one chance of a cure and that has now gone. I get it! I don’t know what makes me get up each day some days but I do because there is life to live and dishes to be done. Do you work CynD? What are your hobbies and interests?
I’ve just finished my second line, I’ve managed to work two days a week throughout (was in bed for most of first line), didn’t lose my hair which I was very pleasantly surprised about. I was on carboplatin/gemcitobine/Avastin. I found parts of the treatment rotten but feel so much better now.
Look no matter what I type here you have to decide yourself whether you want to go through it I’m sure at some point I’ll decide or my body will decide that it’s too much for me but I’m not there yet and neither are you.
If anything we know that OC is likely a very painful way to go, that’s something to put you off surely?
Every woman on here will likely have felt how you are feeling now!
Let me know how you get on please CynD.
Lisa x
Lisa, Lisa, Lisa!
First, I can't think of a more loving way to begin a message than the way you began yours. Second, I have a feeling if there wasn't a pond between us there'd be a bond between us in no time. I think there already is.
"Alone" keeps coming up, of course, because I spoke to it so often in my writing. I will be putting up another post that gets into it deeper. I feel differently than most about what "alone" really means. I hope you'll give it a read.
Ah yes, the "dwindling supporters." You are absolutely right, EVERYONE with cancer seems to have experienced this unpleasant phenomenon. I spoke with my friend in Oregon tonight and told her that I've decided that people who DON'T have cancer see people that DO in two stages: Hair and no hair. No hair is proof of cancer and when supporters are compelled to say things like, "Oh my God. Let me know if there's anything I can do!" This is during the "present supporters" phase. Then our hair starts to come back and they say things like, "Oh my Gosh, your HAIR'S coming back! I knew you'd beat this thing!" This is when they dwindle. My theory about this is absolutely scientific. I was checking my blood sugar AND drinking something fizzy whence first I hypothesized!
You said a mouthful when you said there are very few people you can be your true self around without the fear of scaring them off. I think that's kinda true about people and life in general. I try to remind myself that if you have just one or two people you can truly call "friend" then you can call yourself lucky, so it seems reasonable that throwing cancer into the mix could wipe that number out completely. I really want to thank you for acknowledging that even though we all feel alone there is a difference between the feeling and the reality. Again, I write about this in the coming post. It's not a "better" or "worse" thing, it's just a "different" thing. The lack of support for cancer patients is sorely lacking here in Austin. I had even thought about trying to fill that gap by starting something myself since I have cancer and am a licensed social worker with clinical training. I thought about a lot of things before finding out I'd recurred. Still thinking.
I also want to thank you for the bold reminder that I can get second line treatment and stop but I can’t not start - at least not without dire consequences. Most of the women here have been very careful about telling me to do this or that in an effort to be supportive of whatever choice I decide to make. But there have been a few who, like you, just put it on the table, no holds barred, to say "quitting is not an option!" And you know what? I need that approach to this news every bit as much as the other! It's the difference between a hug and a kick in the ass! You are absolutely right about me, by the way... I AM a fighter, but I've also learned to pick my battles - especially since cancer invaded my world. I am frighteningly clear that if I don't go forward with treatment, there is no changing my mind and it's daunting! I wish I could just leave it alone for now, and pick it up after the holidays, or a nice long vacation, and ... whoops I slipped into fantasy land there for a second. Okay, I'm back now.
I hate that you have had a recurrence. but I can't thank you enough for sharing about it. Your writing helped to normalize a lot of what's going on with me. So February would put you at about 10 months now. How do you feel? Where are you at medically? No, I'm not working though I'd like to be. Two primary cancers kind of put the kabosh on that! I finished school and went straight into cancer. I have been a musician all my life and I really miss it. Chemo has wrecked havoc on me in that regard and that is part of my reluctance to have more. If life is just going to be about losing the ability to do the things I love, without anyone around for me to love or love me back, then why bother? I also love to write (as you can tell)... and write... and write. Some of the things I like to do have made cancer more bearable - things like watching old movies, puttering around the house, reading, contemplating life - all great activities for anyone undergoing chemo! Now and again those things have taken a turn on me and I feel like I'm going to go crazy if I have to spend one more day indoors, imprisoned and ensconced in my small little world. But, as a social worker, I have learned to "reframe" those feelings into something more positive. So, on the days that I feel like I'm going to hurl my laptop at the t.v., couldn't care less about doing little things around my house, am too restless to read, and have contemplated myself into something somewhere between blind rage and suicide, I remind myself of all those times in my life that I would've given my right tit just to have one day to do nothing but lay around, watch t.v., putter, read and ponder.
How people work while they're on chemo is beyond me, so good for you! And I'm so glad to hear you didn't lose your hair and are feeling better!! It always makes me feel good to know someone is doing well and feeling good. If it can happen to you, it can happen to me, right?
At some point, even if I decide to continue treatment, depending on my body's ability to keep taking it, the decision to keep going may no longer be up to me, and I hate the uncertainty in that. I'm glad you're not there yet but I'm not sure if I am or not. Chemo really did a number on me. When I was writing the upcoming post, for the first time I saw how much damage had actually been done because it was the first time I stopped and actually wrote it down. If I don't continue treatment, you're right, it's not going to pretty and my doctor was clear about that. Good grief! Does this thing have a happy ending in any of these scenarios?
Okay, I've written you a novel here - a little something to peruse when you've got a little time on your hands. Obviously you're going to need REALLY big hands!
From the bottom of my heart!
...Cyndie
Hi Cyndie
I am so sorry i just want to wrap you in my soft velour blanket I am wrapped up in suffering effects of chemo 6 and give you a big hug and wave a magic wand and make your pain go away. Be strong you have done so well and i know its difficult you have been suffering for much longer than me.x
I'm so sorry that chemo 6 has you feeling poorly, but that cozy velour blanket sounds pretty dang good. In fact, there is nothing I'd like better than to be there snuggled up with you. We could eat pizza, binge watch old movies, give medical marijuana a go, invite the rest of the girls and have ourselves one helluvamazing slumber party! Do you think you could wave that magic wand and transport me to the UK? I'm packing my hugs as we speak! XXX!
Hi Cyndy
I will try to wave my wand very hard to get you here so we can do just that together sounds heaven have a girlie time like that. Sending you lots of virtual hugs from my sick bed. Be kind to yourselfx
Hi Cynde
I am sorry you are feeling this way. I hope though that having read all the replies from the wonderful women on this site that you feel a little better and less alone. As one or two pointed out, we can have a huge loving family and many friends but we still ultimately face this journey alone.
You have a great gift though, you write beautifully. Could you not make something of that and join a creative writing group?
I recurred in March, but in some ways the reality of it was easier to cope with than the worry that preceded it. Mad I know.
The treatment of Carbo/Caelyx was for me very easy to tolerate once I got the initial nausea sorted out. Very few side effects and much easier than Carbo/taxol. Also good results. I also got my original tumour tested for somatic mutation, it came back positive and I’m now on a parp Inhibitor.
I’m sure there must be some way you could have a cat again. So many need loving owners like you. You might be able to agree a way to do this with an Animal Shelter if you explain your circumstances.
Sending you love and hugs 🤗
Sophia xx
Sophia!
Such a musical name! Reading through all the replies has definitely given me a broader perspective on what's happening. In fact, it was almost a little jarring to hear what the women here had to say and how different it was from the research I've read and what my doctor had to say. In terms of going this "alone," well, I have a lot of feelings about that and am going to post in that regard. I'm having a lot of feelings about a lot of things right now, but I just got off the phone with my friend in Oregon and that has really helped me to feel a little more stable about everything - like maybe it's possible to get my footing in all this. I just wish I had more time to look at all the facts before I had to make my next move. "To treat or not to treat? That is the question."... Cyndie Shakespear
It makes me feel so good that you enjoyed my writing because writing is something that's always been very important to me and I sometime fear that what I feel the need to get out might be too much, too long, too something or another for the ones reading it. Then again, I tell myself that the reader is the one in control. They can stop any time they like. I'm so glad that you didn't. I can't say my post was a work of art or anything particularly special, but maybe that's why it's all the nicer to be complimented on it. I spoke my truth and you THANKED me for it. Wow!
When you said that in some ways the reality of recurring was easier to cope with than the worry that preceded it, I completely connected to that. While things still seem kind of unreal and like I'm in a daze about it all, there is absolutely a part of me that is RELIEVED to finally have gotten the news. The waiting is over. Even though the news was bad, the waiting was hell. And, no, you are not "mad."
It's always reassuring to hear more good news about Carbo/Caelyx. Very few side effects and good results are music to my ears! I have a friend on a parb inhibitor - Oliparib, me thinks - but it was NOT a good thing for her. She had terrible side-effects and it actually diminished her quality of life. How is it working out for you? What are you taking?
When I was really sick and in the hospital and on a lot of pain meds I used to have these weird, waking dreams about my cat Quincy. I felt like I could actually feel him come up to me and snuggle his little face against my cheek! It was the most intense sensation and like the only joy I had going. I miss him so. That's a brilliant idea about working something out with the place I might get a cat from. I hadn't thought of it. It troubles me that I can't commit a lifetime to a new pet, but I feel like I need that life force near me, moving around in my space. Even if it's just a big lump of lazy fur & purr at the foot of my bed, or sleeping in my lap, I NEED another cat, but then I think about it ending up without the love and care it would've gotten used to with me, and... ugh. You get the picture. I can't give it a good, FULL life. I can give it a good, FOR NOW life, but then what happens? First, things first. I've got to figure out where I go from here and it's nice to be going with love and hugs! Thank you for that! I reciprocate in full!
...Cyndie
You said u have accepted the heavenly father
Now ask him about ur purpose here and what the next step. Than meditate , quiet your sprit
and see what he has to say.God Bless u
Praying for you!!!
Hi Cinia! God is probably so sick of me asking that question He's put in ear plugs Seriously though, I pray He will give me the ability to recognize when He is speaking to me, and the ability to understand His message. Like today, I prayed for guidance and, as often seems to be the case, there was an oddly appropriate message in a book I look at daily, It was so fitting it seemed like a direct response! It probably WAS. It's so true that the Lord works in mysterious ways. Maybe that's why I always feel good when it seems like there's a little mystery in my life where God is concerned. It makes me feel connected to Him. Thank you for praying for me! I pray for you too - everyone on this site, actually! Smiles and hugs!
...Cyndie
No he will never get sick of u. He made u and loves u. Try taking time daily in that special place to meet with him to talk or just listen and meditate. Most of all do not let bitterness set up in ur heart. Be grateful and
give thanks . You r still here and there is still hope. And I am still praying!!! May God strengthen u in ur inward man by his spirit.
A cheerful heart does wonders !!!!
It's back :(
Update re ibuprofen, aspirin, etc
My mom has oc 3A low grade
