MASSIVE SHARE: Enter At Your Own Risk! (and thanks for reading.)

[CynD]

Thank you all so much for your responses to “It’s back.” I will do individual responses to each of you, but also feel compelled to address you as a community. I see from your responses that while our respective experiences of ovarian cancer are often common among us and well understood by one another, a multitude of differences make each of our situations unique. I’m not exactly sure how to classify this post. A rant? Journaling? War & Peace? I’m gonna go with all of the above. It’s been a REALLY weird week. I feel like I’m hovering in some kind of disconnected place between life and death, and I’m not just talking about cancer. But this post is built around that, the way life unfolds for me, my feelings about the life I live in and the definition and MEANING of “alone.”

Before I had a chance to snuggle in with the news that my colon cancer is in remission, I got hit between the eyes by the news that my ovarian cancer has recurred. I came here, to this safe place, because I just couldn’t go it alone. Not again. Not this time. The level of support, honesty, understanding, empathy, encouragement, humor, simple reminders, hugs, love, prayers, consideration, information, and even a little constrained frustration, has been astounding! Thank you ALL, for each and every word and sentiment.

You’ve all been through so much in your fight to be free from, or at least live with, ovarian cancer. So many times I’ve wondered how you do it, but the truth is I KNOW how you do it because, like each of you, I too am strong, tenacious, and resilient. Like each of you, I'm more likely than not to keep fighting even when I feel like I'm hanging on by a thread. The more difficult question for me has been WHY you do it. I've assumed it’s because you have people you love, and people who love you, and are fighting with you. I’ve assumed you’ve done it because you are NOT in this “alone.” As solitary as this journey can feel, when we come out of our heads and back into life, most of us know that we are not really alone and that is what makes those more desperate moments survivable. But some of us ARE really alone. Instead of flesh & blood people I spend a lot of time with the t.v., or on the internet. I talk to God – a lot! (who else is gonna listen to me for that long, uninterrupted?!). I see a counselor (a breast cancer survivor) once a week. And I come here. Most of you are a least a country away and yet you are probably my closest connections and biggest source of support. These are the places I reach out to as part of my efforts to withstand the degree of my aloneness, but none of them reach out to me.

I suspect most of you have someone to hold your hand when you get scared, cook a meal when you can't, bring you a cup of tea just because, or stay with you until you fall asleep. Maybe you don't have to pile everything in your car and drive to a crowded laundromat just to have clean sheets to put on the bed you're feeling too weak to leave and too exhausted to remake, but maybe if you DO there is someone there to lend a hand with the laundry baskets, keep you company during the spin-cycle, and help you put your bed back together. I suspect most of you get up each day and face what's ahead, no matter how difficult, because you are determined to fight with those who are fighting with you, or you are committed to fighting for those counting on you to be here for as long as you can. Something drives each and every one of you and I suspect it’s your connections to the people in your lives. Someone said they didn’t think it's relevant who is or isn't there when considering continuing treatment, but I say it's the only thing that IS relevant. Aren’t the people in our lives, the ones we love that love us back, the ONLY real reason to stick around? At best, my personal wants, needs, and desires are meaningless if they are sought without purpose or aren’t rooted in love, and accomplishments and creature comforts are empty unless they are shared… with people! If I am the only reason to fight for more life, then I'm not doing anything more important than taking up space and prolonging the inevitable.

Being alone is an important truth about my life that colors every second of it. It doesn’t make things better or worse for me, it just makes them different. Being alone also means I don’t really matter to anyone because there’s no one around to care one way or the other, and that’s not an easy thing to say. I hate the way it sounds and what I think it implies to all of you, but mostly I hate that it’s true, and if you’re hearing, “poor me,” in this admission, you’re missing it. “Alone” is not a sob story, it’s just a true story. I don’t need anyone to feel sorry for me, but I hope you’ll try to understand that MY “alone” is not YOUR “alone.” They are different. By definition “alone” means:

1.Having no one else present; on one's own. (synonyms: by oneself, all alone, solitary, single, solo)

2.Without others' help or participation; single-handed. (synonyms: unaided, unassisted, without help, without assistance)

3.Isolated and lonely. (synonyms: solitary, deserted, abandoned, forsaken, forlorn, friendless

1 & 2 are EXACTLY what I mean when I say, “I am alone.” 3 is how I feel at my worst – a place I don’t go to very often. My “alone” is as much the result of the choices I’ve made, as it is what was thrust upon me as a child. My dad died of MS when I was 10, my mom of pancreatic cancer when I was 18. So part of me had a keen awareness of mortality early on, but another part of me always thought I’d have time to connect and commit more thoroughly – time to build deeper more lasting relationships. I’m usually well-liked, out-going, and make friends easily, and I try to live with integrity. But the bottom line is I don’t have the kind of relationships in place that I need to have in order to justify putting myself through the continued hell of fighting ovarian cancer. I just can’t go it alone anymore.

For 1 year and 5 months I've been putting one foot in front of the other, doing everything required of me medically, going beyond what I thought I was capable of physically, and pushing myself to my limits mentally, emotionally, intellectually and even academically trying to absorb an overload of information for a complex, multi-cancer diagnosis. I’ve done it because I’ve had to, no one else was going to do it, I’m good at hard, and there was ALWAYS the promise of a future. Besides, I’d invested a lot of time and effort in that future and I wasn’t about to give it up without a fight. So I fought, and I fought hard, and I did it alone, and now I’m tired. On the whole, the feedback from all of you has been positive and it definitely sparked the hope that was dashed in my doctor appointment. But it’s in stark contrast to what my doctor had to say, the statistics, the research, and I’m feeling confused by all the discrepancies in the information. That said, all of you are LIVING proof of what it means to fight OC and recurrence, so I feel apt to be guided by YOUR expertise. But something is stopping me, and I can’t seem to keep that spark of hope alive, and I’m pretty sure it’s because I’m alone. If all more chemo buys me is a side-effects ridden version of what I have

I have stage 3c, high grade, serous carcinoma – epithelial ovarian cancer/primary peritoneal cancer. I’m not going to go in the colon cancer stuff other than to say that it led to the diagnosis of ovarian cancer. I had exploratory surgery, did chemo, debulking surgery, more chemo and, like all of you, ticked down the 10 months to recurrence 3 months at a time. The waiting was excruciating – maybe even worse than the bad news itself. I likened it to being on death row with a stay of execution. I knew that at any moment the governor could call and say it was back on – that it was time for me to die – but until then I’d just have to wait, pacing back and forth in my cell, and jumping every time the phone rang. Another woman on here compared the time between those 3 month visits to waking up every morning feeling like she was about to go before a firing squad – exactly how I felt the day of my last appointment: READY!... “Your CA125 has doubled…” AIM!... “and I’m sorry to tell you the news isn’t good.” FIRE!... “The cancer has come back.” My head dropped and I felt myself crumple, but I knew I wasn’t dead because tears were pouring from my eyes. Up to that moment I prayed, I hoped, I relied on the way I was feeling, and the fullness or flatness of my stomach, but I suppose I always knew it would come back. I’d read somewhere that the worse your ascites, the more likely the cancer will recur, and I had 15 liters drained out of me. I’m BRCA 1 & 2 negative, so treatment after recurrence is likely to be less effective. Like all of you, I’ve lost my hair – twice – which, honestly, turned out to be the least of all of it. Worse was when it came back – like an old lady perm, and gray! I gained 30 lbs. after surgery which has made everyone happy but me, but apparently I’m more likely to survive if I’m fat. I still FEEL like me – maybe even a BETTER version of me in some ways – but physically… visually… me has gone missing. Peripheral neuropathy in my hands and feet has made it nearly impossible to do many of the things that used to help keep me sane: playing guitar, piano, drums, writing (by hand or typing), standing, walking, even just sitting still and relaxing, and it’s getting worse, not better. My hearing has been effected, my eyesight has been damaged (I now have retinopathy & cataracts), my diabetes appears to be permanently uncontrolled, and my blood pressure consistently high. I’ve dealt with 2 blood clots (upper left arm from 1st chemo, and right leg just to keep it interesting), shingles, UTI’s, unrelenting incontinence, uncontrollable tremors, loss of grip strength, and some weird arthritic thing in my hands including fingers that lock and the partial loss of the use of my right thumb. (A big shout out to Taxil/Carboplatin, without whom NONE of this would have been possible!) Chemo has wrecked nearly every part of me, so unless there is more to look forward to than this… no thank you.

But it’s not just all cancer all the time. No! There are a plethora of things that weigh me down like cement boots in a swimming pool: POLITICS, for example. I now live in a country under the leadership of angry despot! An insane, xenophobic, narcissist whose hatred and racism is rivaled only by that of Adolph Hitler. He has divided this nation like I’ve never seen in my lifetime. Our democracy is looking more and more like an autocracy, and I am increasingly troubled by the global relationships this maniacal boob is destroying at every turn. He thinks climate change is a hoax. The proof? He was recently in extremely COLD weather and stupidly tweeted, “What happened to global warming?” Apparently our moron and chief thinks the “warming” in global warming only refers to the weather that’s hot. The gun violence in America (fueled by Trump’s anger and carried out with his blessings) takes us from one unspeakable tragedy to the next with no time to process before it happens again. Bombs were sent to people because of their political party affiliation and willingness to speak out against the idiot at the helm. Who else but Trump would criticize rather than praise the men and women fighting to contain the worst fires in the history of southern California, degrade women with name-calling and abusive language, and bar Jim Acosta from the White House as he yammers on about how the press is “the enemy of the people,” and all in the same foul breath. Look! It’s the village idiot! He’s launching into another attack on Mexicans who, in his tiny, fear-mongering, caravan-obsessed mind, are all drug dealing murderers with leprosy, and members of MS13. He is evil. He is a liar. He is the president of the increasingly UnUnited States of America. If he has his way, the Medicaid I’ve been relying on to keep me alive will go away completely, along with the government benefits he’s trying to cut or get rid of.

When I can’t take another second of politics, FINANCIAL DOOM is always ready and waiting: My total income is $210 short of my rent. I have a broken phone, broken fridge, broken car, and the rest of the money for the car insurance I couldn’t pay for in full this time is due in a few days.

Since I could go on for days with that topic I’ll just leave it there for now and move on to LIFE & DEATH ISSUES outside of my own: There is a glut of unwanted animals here in Austin because too many people don’t like the idea of spaying and neutering their pets, but they won’t think twice about killing them in place of having to house and feed them. How long does it take to die from ovarian cancer if you stop treatment? Four months judging by my friend Leslie. Terri is losing her battle with OC despite trying everything and living in a way that everyone swears will keep you from getting cancer in the first place. No idea if she is alive or dead because she stopped responding to any contact ... again! This time I’m just going to have to let it be what it is. Forrest has some kind of deadly blood cancer, Adam has late stage stomach cancer, and then there are all the women in the Livestrong program – 12 breast cancers and one lung. It’s like hanging out with the grim reaper.

And finally, there’s all that RANDOM CRAP. Always readily available, unavoidable, and there in abundance. The other day a friend was going on and on about she’s not afraid to die and is “at peace” with the idea of death, and how she has “no fear” around any of it. This is my HEALTHY, CANCER-FREE friend, by the way, who has no clue what it’s like to have actually been given an END date along with a full description of how awful and painful it’s going to be! I mean, there she was gloating over her untapped strength in the face of something she knows nothing about… and to ME of all people! It took a minute for the full effect of her insensitivity and thoughtlessness to really sink in but by that time it did I got a text from her cancelling the plans we’d JUST made for the next day. We were supposed to meet for lunch and go shopping to celebrate the colon cancer news and to do something fun before my the ovarian cancer news. “Oh no!...” she texts, “I just remembered that both my teams are playing at noon tomorrow so I can’t make it!” Really?! You need to watch a football game rather than be with your cancer friend who’s trying to celebrate the best and prepare for the worst? REALLY?! I dumped her.

Listen, I’m no victim and I certainly don’t want anyone to feel sorry for me, but when I say I am “alone” in all this, I mean it. Many of you have talked about cancer being an experience we ALL have to do “alone” even if you have friends and family around you. But I beg to differ. FEELING like you’re alone even though you have people there, and actually being alone because there IS no one there, are not the same thing. I am alone, completely, every morning, every night, every day, every holiday, all of the time. I deal with cancer alone, always. Decisions around it are made by me alone, always. Everything that has anything to do with my life is up to me alone, always. There is no one to be alone around, or to make me feel alone, or even to leave me alone. It’s not a sentiment, it is a fact. It’s not a feeling, it’s a truth. It’s not symmantics, it’s by definition, “ALONE.” It doesn’t mean I don’t have wonderful interactions with people that I value beyond words. I get to look at the trees, hear the birds, see nature, and am brought to tears by the unspeakable beauty of it all – the sound of rain, the smell of grass, a flower, and the various creatures that find their way onto my porch and seem to trust me so readily. I am sustained by the knowledge that, amidst the chaos of the world, there are people who consistently rise to fight for those who are disenfranchised and marginalized – people who are brave enough to stand up to social injustices, and advocate for those without a voice. There are people like ALL OF YOU who love and give despite the weight of their own troubles and afflictions, and without the expectation of ANYTHING in return. These are the things that get me through the day, but I experience them ALONE and I don’t think I can go it alone anymore. I need to matter. I need someone to be there for me, to support me, to love me, to give me a reason to get out of bed in the morning and, if there’s a breath left in me, encourage me to get back out into life with the assurance that I CAN be a part of the change I seek. I feel like it would take so little from people to keep me from being alone - the touch of a hand, reaching out, stopping by, coming over, just keeping your gahdamn word. I didn’t even matter enough to someone I KNOW for her to bother keeping her plans with me, and I wonder why that is. I got hooked up with a cancer survivor buddy through “Regarding Cancer.” We met for lunch and she brought me all these gifts, we talked and had a nice time then agreed to get together again. We kept texting about meeting for lunch, finally made a plan, and then she cancelled, last minute, twice, and then I never heard from her again. I mean, WTF?! Is there something about me that screams I don’t need anyone, I’m fine? People seem think I’m good human. I get told that I have such a great attitude and that I’m easy to talk to… blah, blah, blah. I was talking with this guy at the YMCA and he said, “I bet you’re a REALLY good therapist. You have such great energy and you’re so positive.” Well if I’m so freaking great why am I so completely alone?! I just don’t understand it and it doesn’t seem like I’m going to be able to change it any time soon. I can continue to reach out and do everything in my power to connect with the people around me, but if nothing comes back, where does that leave me? Everyone I know with cancer has had the experience of watching the people in their lives just kind of fade away, or not even show up in the first place, but in the end they all still have somebody – usually, several somebodies. And there’s me, out here alone without a soul in sight, and starting to feel a little embarrassed and kind of desperate about the whole thing. I’m like the fat girl at the party no one wants to dance with! So I have some questions for all of you… Is this experience shared or as inexplicable and isolated as it feels? Do any of you relate to any of this? Why do my relationships never seem to stick? Is this just the world we all live in now and for some reason I just never got the memo? What the hell is going on? And how can I continue to go on if it’s just going to be more of the same against the backdrop of cancer?

I see my other gyn-onc on Thursday. His opinion and expertise matter to me. I’ll decide after that. The irony that I might choose death after having fought so hard for life is not lost on me, but it seems strangely fitting for someone who STILL finds herself out-of-sync and confused by the world she lives in.

…Love, Cyndie

[lesleysage]

Oh Cyndie, what do I say? Such a profound read; so simply, "Thank you". I so wish I could do or say something to make a difference, but I can't. Warmest of hugs across the ether for whatever lies ahead. Lesley

[Hidden]

Very profound and powerful statement. I think we feel alone unless we meet others going through the same treatment and illness. This actually helps in a big way. I have found I keep my Cancer separate from my friends, it seems to suit them that way. I would go to meet likewise women because they truly understand. My family do worry about me, I had recurrence this year with pain which is draining me. Now its seems like it could be lymphodema,, waiting to have mri. I haven't told my friends this yet, I wish you the best and sorry I cannot do anything about your Leader, he is not liked here either nor by my relatives in your country

[Coldethyl]

Personally I think even with family and friends you are alone once you’ve been given a diagnosis of cancer , especially one that isn’t the pink fluffy success story that breast cancer is peddled as! I think there comes a point at which we decide we’ve had enough and that will be a different points for each of us - I read of women in here going far beyond what I think I’d do to stay alive but until I’m there I don’t know. If you choose not to do anything then there will be support here , just as there will be support for you if you decide that further treatment will give you meaningful time x

[Manchesterlady]

Dear Cyndie, thank you for posting , none of us know what’s going to happen to us , it’s harder , I know , when you have OC , as it’s like the sword of damacleas over or head ,and I think we all feel alone in those dark times. I just want to put my arms around you , your not alone when you have all the ladies on here, they have saved my life when I was at my lowest.

Sending love and hope

Sheila xx

[Yoshbosh in reply to Manchesterlady]

I totally agree with you, Sheila x

[ssjmichael]

That was a very emotional read Leo Tolst..I mean Cyndie ;)...Handling this disease from the point of view of a caregiver, rather than the patient, I can't truly know just how it feels to be where you, and all the amazing women on here are. This illness, and the drugs they give you are known to make people a little foggy at times, but it can also give you a sense of clarity on life, and the bigger picture. And what you shared is a great example of that.

I also can't say that I am as alone as you. But those feelings of being alone, or lonely, etc.., I do feel I can relate to very much. I'm an only child, and I've always been painfully shy. Something I always hoped I'd "grow out of", but it has yet to happen. I suppose as an extension of that, I suffer from social anxiety. It's something I've wanted to address for a while, but it was put on the back-burner when my mom got sick in 2015, and I've sort of been faking it till I make it since.

I feel like I've been living for my mom these past 3 years. Most hours of the day are spent caring (and worrying) about her. But there will be a time when she's no longer here, and the thought of that scares me terribly, and makes me feel very alone all the time. I just feel like I won't be able to function, or lead a normal life after her, and those thoughts often bring on much darker ones.

I think just waking up every day, and not knowing what will happen can give life purpose in itself. Sometimes when I've been at my darkest, something unexpected happens that brings a lot of light back in. Like the universe's way of balancing things out. Your future certainly isn't set in stone one way or another. For all we know, you might be laughing about this 5-10 years down the road, while at dinner with a husband, and friends. Like I said in my first reply to you the other day, you have our support no matter what you decide.

-Michael

PS: With regards to he who must not be named. When my mom first got sick, she had a pleural effusion on both sides, and just was not doing good at all. One thought that almost comforted us, and made us laugh was thinking that she might not be around to see him in power, and what that would mean for our country.

[January-2016-UK]

Do take up a creative writing course, I think you write brilliantly. You will meet people as well, not necessarily Mr Right but friends. Remember that some are not alone but their loved ones cannot help them for they maybe young children. So some will have to make their children's beds as well as their own. Children are hard work although also enjoyable. Some partners are ill with other diseases and need help and cannot give much help in return. I know having someone to help you is only one facet of not being alone. It's true I think that two can live almost as cheaply as one which would help you financially enormously and also someone to talk to. One day you may find someone probably when you least expect it. Maybe you could help in a hospice on the days you feel well. Giving your time to someone who needs it can be enormously empowering. Try and join a couple of clubs in a subject you are interested in. I have read loneliness can shorten your life and actually make you ill. You need some more friends first and then see what follows.

Hope you decide to take whatever treatment is on offer.

All the best

Helen

[Alifit]

Gosh Cyndie, a moving and enlightening post. A great reminder that not everyone finds themselves with the same level of support. Your post tells me much about you (I totally agree with you about your leader - we in the UK are also facing challenges which I personally think will make us worse, rather than better off).

I hope you have the strength and courage to make the right decision for your future, after taking advice from your team and chatting more to your God.

With love and best wishes to you, Ali x

[Boot1947]

Brilliant post, Cyndie. You write and express yourself beautifully. I can’t begin to know how it feels to have to worry about the costs of medical care on top of everything else - however rusty our NHS is becoming, it is still a thing of wonder. I agree with Coldethyl - a cancer diagnosis does set us apart in many ways and other people are not that interested, to be honest. My adult children only want to hear that I’m doing OK. How can I bother them with post-op-and-chemo side effects like incontinence, neuropathy, hernias and just not feeling like ‘me’ anymore? My friends would prefer not to talk about life-threatening disease - and who can blame them? I think we just have to carry on carrying on and look for the bright stuff amongst the grey. No help, I know, but your virtual friends are all here to listen to you and, hopefully, be of support. Deb xx

[27-359]

Hi Cyndi. ME TOO. You are not the only person to feel sad for themselves when I read a post saying that their wonderful husband had prepared a special meal when they got home from chemo, or took them out for a treat when chemo ended, or planned a special holiday to celebrate. Please continue to rant on this site. We do understand, really.

[Yoshbosh]

Thank you for sharing your feelings so candidly and eloquently Cyndie. You clearly have a tough core to have faced so much with so little support. I think there will come a time for many of us to decide ‘what next?’ and we will have to make that agonising call as to whether to continue treatment or not. Whatever decision you make, it will be the right one for you.

Lots of love,

Vicki x

[JayGeeCee]

Hi Cyndie

I hope verbalising how things are and how you really feel has given you a little comfort.

I would bet that I’m not the only one who NEVER shares how they really feel with anyone. My family just want to hear I’m doing ok, so that’s what I tell them.

Yes , in the truest sense of the word you are alone and have to make that decision completely alone. But, be sure that we are here, listening and will support you dear lady.

Sending you a big hug

Joy xx

[Bettyxxx]

Hello Cyndie

I really valued reading your post and agree with some of the advice the others have given. I would also second the view that you are always able to vent and be listened to and supported as much as we can. However you are right i cannot understand what your journey is like, as i have ‘people’and family, just as you cannot know or understand my struggles and that of the others on here, different but still difficult to each and every one of us xx.

I can only offer something i have observed in both my (was) working life and my own relationships. I think people sometimes appear like they dont need help/support/friendships i remember when my kids were little and i lived in a villige of ‘old people’ (haha my age now 50’s) i was in my early 20’s i was very lonely as my hubby worked away and i was talking to a mum in the playground and told her i felt like i had no friends she was shocked youshe said you always seem happy and sorted never thought you needed anyone.

That made me change the way i approached people, i had to mellow not look so strong listen and forgive when things dont work out how i like them, and have a small number of very good friends not one who lives next door and would pop in and bake me cakes (like in soap operas) and sometimes i envy those with a ‘see every day best friend’ but i love my ‘lot’. My husband says I couldn’t cope with a friendship like that, and he probably knows me best! I dont think its ever 2 late to make fiends but i guess the closeness takes time xx i have met 3 lovely ladies through the cancer i dont meet them very often but when I do i value it immensely (you know who you are xx).

The other thing i noticed through the numerous people i met at work when something happened in their lives like illness or divorce, and they were sruggling. They were usually the ‘sorted’ ones the ones who are everyone else’s support and ‘go too’ person, then when they need it the friend to turn to in a crisis, and their friends dissapear.

My theory for what its worth is we all play a role in life in our work,family, love and friendships and those roles are hard to change. You may be a sorted supporter, go getter, appearing to not need anyone or some people are softer more relient on others all of which are equally valuable, and we cannot change our personalities. Ihave all different types of friends an eclectic mix 😂. A person with a chaotic life who constantly needs support (i have one of these) my role is to support her, through 2 divorces and a really tough life but when my cancer diagnosis came she couldnt cope, so choices are

1) cut her out

2) ingnore her

3) forgive and see what happens

The first 2 mean i lose a lovely friend (only i lose out) the third means i might get her back and sure enough we are back on track and she has shown me strength and compassion i never saw before (back to me labelling people lol)

People i met in work some thought this idea may be true and worth a thought, and and some couldnt forgive the person who lets them down and thats their choice.

I guess my point is that sometimes you have to forgive (or not) people who because of their own load/upbringing or coping strategies cannot cope and dont close a door on something which could be valuable. The friend who let you down maybe this applies just send a text say you understand she had to cancel but really value her contact and see if she comes back, maybe she thinks you dont need her? friendships are not easy but if we treat them as disposable and move on to the next we may never get any depth. I do understand the need to speed everything up with our diagnosis but some things cant be rushed, i understand your anger and frustration too but sometimes i find it useful to stand back and reflect. Nursing is obsessed with reflection and reflective models which help you look at a situation and decide how to approach it differently next time, maybe worth a look i dont know xx I hope you dont think i am minimalising what you say or trying to appear self righteous as i get it wrong and upset people regularly lol xx i just thought i would share my experiences

Sending lots of love

Diane

[Seasun36-uk in reply to Bettyxxx]

Thank you for your insights Diane xx

[delia2]

Dear Cyndie, thank you for putting your true feelings and situation out there. I am not alone like you but I have had a period like that in my life especially where I didn’t have enough money from month to month. You are under stresses that no one should have to go through and I just hope you can avoid making death the short term solution to some problems that can be fixed. I do believe we need more discussion of when to stop treatment but you are not at that stage as far as OC goes. You can make the choice obviously but I hear you as someone who is asking for help. You said you were in grad school. Can you get more student loans? Also possibly be more forgiving when people let you down because you do need them right now? It sounds like you are going through a profound existential crisis but it doesn’t sound like you don’t want to live. Thank you for writing about it. I hope you find the support you need.

[grammeejill]

I love you, CynD.

[Cropcrop]

Oh cyndie, what an open and honest post and thank you for sharing your innermost thoughts and feelings with us. I believe that we are all alone with our cancer regardless of those around us and yes it is nice to have somebody there to make the cuppa or do the laundry but on the flip side do we feel pressurised to make the decision to fight for ourself or for those around us? We have to be strong for them as well as ourselves and that in itself can be such hard work.

The only people who know how we are feeling are ourselves, all our fabulous sisters here have their own individual feelings about this disease but we do understand because we really do know how it feels and can therefore truly empathise and sympathise. Many of us have, I believe, had the thoughts of is it all really worthwhile but we make our own decisions and go with it even if that is to not fight any more. None of us know what will happen in the future but we have to handle the hand dealt to us even though often it is so unfair and particularly hard to comprehend the rationale behind it if indeed there is any.

Often this bloody awful disease puts so many other things into perspective for us and isn’t it so annoying when idiots are put in the position of being allowed to make world changing decisions and spout idiotic comments without engaging any worthwhile brain cells, it makes many of us so mad, your president isn’t the brightest light in the world and many of us are amazed he was elected but elected he was and we have to hold our breath and hope isn’t allowed anywhere the big red button during his term of office.

We live each day with this disease hanging over us and we all do the very best we can and handle it in our own way. Please be sure that every one of us is here for you, you have our total support and understanding. I send you big big hugs across the pond and hope you are able to get the help and support you so dearly need whatever you choose to do. Keep strong lovely lady ❤️Xx Jane

[babyboy1]

Hey Cyndi, I second all the responses on here! Sending you all my Love, and Prayers!xxxDawn!😀🌻😀

[Caroles1]

Cyndie,

I do what I do for me, life is precious and shouldn’t be wasted.

However, It is your life, as it is mine and your choice. When we are diagnosed, I feel we are very much alone anyway whether we have family or not, because we are in the zone and the support isn’t always there anyway.

If I personally was on your position, I would fight to the end to prove the doubters wrong and try to do some good for the causes linked to this disease, I wouldn’t go without a fight, no matter what,

Good wishes,

Cxx

[LittleSan]

Oh my goodness, such an eloquent, thought provoking post deserves thoughful, insightful answers (which you have above). Chemo brain and lack of knowledge of the care system over the pond prevents me from replying as I want to. Hopefully I will muster a better reply later. I just wanted to send heartfelt wishes for a clearer solution for you and for you to achieve some physical strength and joie de vivre.

I can relate to your feelings over the president (I refuse to give him the respect of a capital p!). Even from a distance he makes me fearful for the world and repulsed over his behaviour as a human being. The world would be a better place if he was overthrown.

The world does need altruistic, eloquent writers however, to inform, inspire and encourage people to lead better lives. You are one of those people. Could you not reach further via social media to make your stamp on the world? Could your faith not help you in a church community where you could share your social work knowledge in their community duties in return for a little practical help?

Ooh I didn't do so badly once I got going!

Love and strength to you Cyndie.

Hope the support from this lovely bunch helps a little.

Sandra x

[IrishMollyO]

Dear Cyndie

I read your post really late last night and your description of your total feeling of isolation was heartbreaking. I know you said it's not the same as yours but that isolated feeling goes with this rotten disease no matter how many people we are surrounded by. I got the same diagnosis as you in 2011 stage 3 C high grade serous PPC. I was my elderly mothers primary carer and living in an isolated country area having moved from my house in the city to be with her. My lovely big brother came home from Africa to help with driving etc. I was inoperable but responded well to chemo.

My mother died in 2015 the same year I had a recurrence in my lymph nodes. More chemo to take me to stable. Last year I had a totally unrelated diagnosis of breast cancer. The first anniversary of my mastectomy is next Wed the same day I am getting rescanned for my present recurrence in lymph nodes. More chemo will follow. If I'm lucky ! I'm not letting this goddam disease put me down.

I spoke to a friend this evening and got upset that I'm not included in an annual get together that's happening next week. As it happens I am back in the city for a different reason but nobody seemed to cop on that precious opportunities for meeting up are dwindling ! It's just that I'm so good at hiding my fears and pretending I'm invincible that they either choose not to see the reality or really can't see it. I suspect you are in that place .

I just want you to know you are not alone. You are such a wonderful writer and your post would touch so many people that it's a pity the whole world can't read it. I feel that so many people would reach out to help you if they could only read it.

I hope I have helped you in some small way. Take care and stay hopeful. I will add you to my special prayers.

X X X

💚💕

[Maxjor]

Cyndie--you write and "vent" well and all I wanted to say is I am sorry you are feeling as you do. I suppose it's selfish to say please keep fighting and we need you and I love communicating with you and all that may have no effect on how you are feeling or doing day to day. I wish you peace with whatever decision you --did you see your other gyn-onc and may I ask what he/she said? Sending virtual everything (hugs, strength, love). Judy

P.S. I am so upset by our #45 that I cannot listen to his voice anymore.

[Hidden]

Well Cyndie I think I'm losing it, I spent a while looking on FB trying to find your last post and reply, then realised I was looking on Ovarian Cancer UK for someone based in the USA.

I find you, then read this, you write so bloody well, even though your post is a hard read. I didn't really think much about why I keep fighting but you are right I fight for others, my son (13), my husband, the guilt of leaving them behind. You have the freedom to make choices I don't.

How did you get on with your Oncologyist.. update please!

Lisa x