Does Anyone Ever Feel This Way?: I find myself as... - My Ovacome

My Ovacome

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Does Anyone Ever Feel This Way?

Saintgermain profile image
58 Replies

I find myself as a fairly new survivor trying to find the new normal kind of like "Humpty Dumpty" that fell off the wall I'm rather proud of myself finding inner strength getting back to my exercise regime and trying to move forward in the shadow of this journey but at times feel like an island regarding family and friends on some level I'm still struggling but to them its all is back to normal recently a close Friend, she was diagnosed with 1A endometrial around the same time I was with 3B she told me she's all in the clear no more follow-up appointments which I'm happy for her but when she mentioned "gosh I just hate those checkups their the worst" I had to bite my tongue she never went to chemo or the aftermath it hurt, maybe I'm just oversensitive my Husband is a great guy but at times its like this is all in the past like this life changing journey never happened. Thanks Sisters just had to vent today.

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Saintgermain profile image
Saintgermain
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Lyndy profile image
Lyndy

Perfectly normal Saintgermain..similar thing happened to me…very unhealthy friend had testing at same time as me (I am the fit, optimum weight, veggie one) she gets ‘all normal’ I get stage 4 hgs! Life isn’t fair but it helps to vent here because we all know that feeling xx

Saintgermain profile image
Saintgermain in reply to Lyndy

Thanks a bunch Lyndy helps a lot!

Bettyxxx profile image
Bettyxxx

Hi ThereI definitely know how you feel, when you first finish treatment i think you can feel quite alone. I dont know if you have children but for me it was like that first bit of pregnancy when you think about it all day everyday but no one else knows. I found it crept into my thoughts all the time even though to everyone else it was finished. I did see a counsellor which for me really helped and also with time (and lots of good luck) you learn to park it away and get on with life. I remember feeling envious of people with other ‘simpler’ cancers (obviously no such thing lol) but in the 8 years since i started and like others i have seen people with much tougher journeys and lost friends and relatives.

I think you have to be kind to yourself and if you feel angry and badley done to then own it because you are! Its not fair and we don’t deserve it, no one does, and for us its not over as you cant put the genie back in the bottle now its out. It does (honestly) get easier but sometimes it pops back and your post took me right back xx good luck in your journey, new beginnings and new hope

Lots of love

Diane

Saintgermain profile image
Saintgermain in reply to Bettyxxx

Hi Dianne,

Thanks so much for your reply. We got married in our 40's first time no children. You are so spot on you do think about it all day everyday it always creeps back into your thoughts if it persists I think I will see a counselor its free thru the Cancer Center so that's an option. I think it is natural to be envious of people with simpler cancers like in my Friends case she puts in me in the same category as her I told her OC is a different elephant in the room. 8 years so happy for you! Your post has helped me I think you have to go thru the feelings to work thru them no we didn't deserve this journey but I have Faith it does get easier. Hugs

27-359 profile image
27-359

Absolutely! Once I had finished my first lot of chemo, everybody presumed everything was fine. When I once confided to a friend that I was forever thinking my cancer was back, she said " How can it be, you don't even have ovaries any more! "I have now been in treatment for six years and am running out of options, but my sister who had a lumpectomy five years ago and has been clear since, still thinks we have had a similar experience.

Jenny

Rankij11 profile image
Rankij11

I’m hoping yours has gone forever, and you will gradually lose that ‘looking over your shoulder’ feeling.The concept of living with cancer is very difficult for the observer.

Saintgermain profile image
Saintgermain in reply to Rankij11

I agree I don't blame the observer its just that we've got a glimpse of our own mortality a little earlier. I'm sure with time the shadow on our shoulder gets dimmer. I wish the same for you.

A1r1t profile image
A1r1t

Hi, I'm still on my journey yet, finished chemo, had targeted therapy now on tablets with regular blood tests and wait and see kind of thing. Everyone around me says I look really well some 🤔 I'm cured, 🤔 I'm back to normal. 😂 What is normal? My new normal is different to their normal. I've tried explaining how I feel at times but they just don't get it. Only people who go through the motions with this awful disease know what it does to your emotions. After saying that I 🤔 myself lucky I'm still here, I was diagnosed in September 2020, had debulking and chemotherapy etc. So I try to look forward, not back but sometimes it isn't easy. At times like that I find it best to be in my own company until it passes. Love and best wishes to you xxxx ♥

Saintgermain profile image
Saintgermain in reply to A1r1t

Sounds like we're at a similar place I finished chemo in October, 2021 I have my next CA125 next week maybe the reason why I'm a little emotional I've been pretty good until now. I can so relate everyone tells me the same thing " you look so well" I'm thankful for that and Friends say that's all behind you now I've decided not to waste my well needed energy trying to explain it. Your questions hits home "What is the new normal"? Our new normal is very different from the average bear. I get a little frustrated when people get upset about minor things in life. I love the Gals on this forum only people on the same page understand. I feel the same quiet time by myself until it passes. Yes, we are still lucky we're still here. Hugs to you! Tammy

Catfeeder profile image
Catfeeder

Hi

I listened to a lady once referring to her journey as being consumed with grief, she wasn’t depressed like others thought of her, she was grieving, the control she had lost on her life, the things she could no longer plan for that others took for granted and the things gone she wished she didn’t have to let go, I can relate to this at times no matter how positive I am or how well I felt and most people around don’t understand this concept though I have explained it to a few, you can tell they mostly don’t get it, perhaps only those of us on this path will ever really get it

Have a lovely day ladies

X

Saintgermain profile image
Saintgermain in reply to Catfeeder

Love your name I'm a huge cat lover even had 2 houses with straw outside for a pair of feral's heated feeding dishes which they actually laid on in the winter one I could actually pet, they passed but probably lived a lot longer due to the food and shelter. Very good analogy it is very much like a journey of grief I never looked at it in that perspective I lost my Mom my BFF a couple of years ago but when I reflect the tears that come out of nowhere sometimes mild anger it is similar thank you. I have a Friend in her 80's was a Friend of my Mom's her Husband passed from prostrate cancer I feel so blessed she gets it when those emotions wash over me I can always touch base with her always supportive and encouraging. Hugs Tammy

Catfeeder profile image
Catfeeder in reply to Saintgermain

Yeeeeeh to our feline friends and companionsTake care x

Carpediem68 profile image
Carpediem68

I finished chemo 7 weeks ago and have just started Olaparib and Avastin. Everyone but my mum and son think it's all over and that I am 'getting better'. I haven't even told a lot of people that I have cancer yet. I just don't want to hear any more stories of 'people they know', with a completely different cancer, who are '20 years clear and doing great'. It's not their fault. I didn't know how tricky OC is as a disease until i got it. I've decided going forward to have a few close friends and family to talk to about it and then to reach out to other ladies on here and in other settings for real understanding. I may go to a councellor too if needed. I think everyone will find their own way of coping but Ido find that talking on here and in other groups and on social media helps a lot. I just find it too exhausing trying to explain to everyone that I am not 'in the clear' and that the drugs i am taking have a lot of side effects. Maybe in the future i will but for now I just want to be happy that I am here and try to enjoy life in the best way that I am able. My advice would be to vent away on here! Other ladies are always here to listen and we understand perfectly!

Saintgermain profile image
Saintgermain in reply to Carpediem68

Hi Samantha,

Thanks for reaching out your a newbie in this club no one wanted to join but we're so glad you found us!I so get not wanting to hear any stories of "people they know" I've given up trying to explain the subtypes of OC goes on deaf ears. Some people I choose like yourself not too tell and one particular 30+ year Friendship has changed with this journey, I was hyped up on steroids for 3 days after my last treatment out of sorts buy trying to hold it together and she took it personal when I called to share with her that my CA125 went from 4300 to 6 I was so happy she reacted cold, distant changed the subject I would say that this journey can put different "goggles" on as the way you see things. I don't know where your located but my cancer center offers free counseling since I'm a fairly new survivor October, 2021 I've been heavily thinking about it. I feel its a double edge sword we have to take the maintenance drugs, endure the side effects it is exhausting to try to explain to everyone. I find that its okay to be a little selfish with your time and energy. It's not about everyone else its about you. Wonderful site, Wonderful Ladies! Hugs!

Carpediem68 profile image
Carpediem68 in reply to Saintgermain

Yes, I've heard that friendshps and family relations can change when you are diagnosed with cancer. In some ways I think that's also the reason I have delayed telling a lot of people. Some friends i don't know well have been amazing and some friends who I classed as really close have hardly been in touch throughout surgery and chemotherapy. It's a funny old world. I try not to take anything personally, even if it is disappointing. If some friends fall away then so be it. I have enough to worry about without worrying about losing some friendships. I need to focus on living for my family - my son and mum in particular. I've become much less emotional and more pragmatic about certain things since my diasgnosis. Whether this is a good thing or not i don't know, but i feel i need to focus sharply on what really, really matters the most going forward. This community has been a huge help in helping me see that. Good luck to you! xx

Rosebine2 profile image
Rosebine2

My close friends know that Im not cured but others tell me Im looking well, and think it means that everything is alright. I tend to smile quietly and move on .No on e who is not going through this can know what a toll it takes on you mentally and physically. Lots of people say they know someone who has had breast cancer and *its totally curable now* well bc might be but oc isnt

Saintgermain profile image
Saintgermain in reply to Rosebine2

Hi Rosebine,

Nice to touch base in this crazy journey. I think smiling quietly and move on is best with certain Friends. Like I mentioned my Friend that is now cured of 1A Endometrial Cancer which I'm truly happy for her is constantly putting us in the same slot I don't even try anymore. It's a tremendous toll. Thanks for always chiming in and helping. Hugs

Tillymint61 profile image
Tillymint61

I have discussed this at length with other ladies who are fortunate to get to this stage. How people see the outside 'normalness' (think I just made up that word!) and think You are 'better' 'normal service has been resumed ' But those of us who unreluctantly joined this club know what other members are going through, despite looking great having a degree of what they did before diagnosis back in their lives. The treatments the side effects and operations and periods of 'scanxiety' umpteen check ups, A&E addmissions. Having to 'isolate' for fear of any infection during treatment, before covid was even a thing!I came to the conclusion that our conditions scare people so much they need to convince themselves you are now ok. That way they don't have to face the reality of, god forbid they got diagnosed , it being a lifetime struggle never leaves some of us. In remission each pain however insignificant thinking is it back.A lady I spoke to has been clear for 18 years and still experiences this. The reminders that pop up to take us back to horrible side effects etc. are be here far away it feels.

It is tempting to play 'top trumps ' when somebody tells there story of their cancer journey (as your friend did)and you think 'that's nothing compared to what I went through ' however we don't as it seves no purpose. We should take comfort in groups like this where others understand exactly what has happened and continues to happen. The outside healing is actually far quicker than the mental healing.

I choose not to let it get to me.(It does sometimes so I pop in here!) They mean well they just don't totally understand and I hope never will.

Saintgermain profile image
Saintgermain in reply to Tillymint61

Hi Tillymint,

Always enjoy chatting with you! I agree I believe our conditions scare people they just want to move onto another subject reminds them of their own mortality. I'm learning with certain people to keep my cards close to my chest. At times like many Ladies on this wonderful Forum I look back and think how the heck did I do it and that and give myself a big pat on the back. I totally get the pains that pop up I read somewhere that Cancer Survivors have earned the right to be hypochondriac's I'm not one but every little niggle gets your attention. I agree as tempting as it is to "top Trumps" so not worth it I think you it hit on head that the outside heals a lot quicker than the inside. Popping in here when these moments hit me is like a breath of fresh air!

Tillymint61 profile image
Tillymint61 in reply to Saintgermain

Totally agree. 👍

Ruebacelle profile image
Ruebacelle

Yeah it sucks. Rollercoaster. Need to talk but cant bore or scare people. Im closing in on 7 years and it does not get easier. Hugs from paris

Saintgermain profile image
Saintgermain in reply to Ruebacelle

Hi Ruebacelle,

It is quite the Rollercoaster than no one wants to buy tickets for. I agree bore or scare People. This site is a blessing! Hugs from Chicago

ZenaJ profile image
ZenaJ

I think with the normal day to day lives of family and friends they get wrapped up in their own world. I remember even when I was having chemo my daughter asked me to go shopping with her and had completely forgotten that I was at the hospital having treatment.

All the cancer adverts on the TV don't do us any favours. It's a constant reminder.

I must admit though that now being nearly nine years down the line, I do forget about it myself most days until the CA125 is due. Then the worry comes back until I get the results.

All the best to you and I do hope it gets easier for you as time goes on.

Love Zena x

Saintgermain profile image
Saintgermain in reply to ZenaJ

Hi Zena,

Always like chatting with you. I agree people do get wrapped up in their own world I think the Pandemic made it worse. I'm a pretty independent person had to put a little space between a well meaning needy Friend like your Daughter which I'm sure really wanted Mom to go shopping with her really forgot the reality that you were hooked up to the IV,

I know those Cancer ads another Friend mentioned twice are you going to contact a Lawyer I said I never used Talcum powder.

You are an inspiration 9 years I am over the moon for you. I think part of my recent emotions are because my CA125 is due next week. How often do you have to have the draw at 9 years? Thanks a bunch. Love Tammy

ZenaJ profile image
ZenaJ in reply to Saintgermain

Hi Tammy, nice to hear from you.

I don't think I have to have them at all but I asked my GP if I could have a test every year for peace of mind. He said he gives all his ovarian cancer ladies a test every 6 months so I was more than than happy with that.

i know I've said it before but I think a lot of our lovely ladies with long term survival leave the forum. It could be because they now have their very busy lives back or they just need an escape from hearing about cancer. It could be for many reasons. I stay because although I don't know what is being said half the time because of new things being offered, I like to at least let everyone know that survival is possible. I'm sure, like me, we all thought in our deepest thoughts that we were on our way out but that's not always the case. It's difficult being positive when going through horrendous treatments. I like to think that more of us survive than don't. We have such good medical help these days.

All the best and let us know your CA125 results.

Love Zena xx

Saintgermain profile image
Saintgermain in reply to ZenaJ

Hi Zena,

Always nice chatting, your an inspiration! I think the 6 months decision is a good call anything to give us peace of mind. I'm going to get my draw today. I didn't really agree with my Onc's decision to push my next CA125 out 6 months when I finished I'm low grade 3B Endometroid my I had my 3 month last month with my gyno/onc which was good he agreed no way every 3 months which I feel a lot better with.

I do agree with you regarding the long term survivors leaving which is unfortunate like yourself we really need them but some may just want to close this chapter. As you know there's so much negative dated stuff on the net we immediately think we're on our way out nobody wants to get OC but we are in a day and age that there are advances years ago our fate would be sealed.

Thanks Zena I'll let you know my CA125. Hugs from Chicago

ZenaJ profile image
ZenaJ in reply to Saintgermain

I definitely agree about the advances. Things are already different than they were in 2013 I'm pleased to say.

For five years I was getting 6 monthly checks at the hospital which I appreciated.

Look forward to hearing from you.

Love Zena x

Saintgermain profile image
Saintgermain in reply to ZenaJ

Hi ZenaWanted to share good news got my CA125 results today it’s. Always a bit nerve wracking but will get better with time it’s at 7 same as when I finished my last treatment in October I can exhale for a few months!

ZenaJ profile image
ZenaJ in reply to Saintgermain

Hi Tammy, That's the best news ever. Fantastic. Long may it remain that way. Keep in touch, Love Zena xx

Saintgermain profile image
Saintgermain in reply to ZenaJ

Thanks a bunch for your support! Hugs Tammy

hilaryjane profile image
hilaryjane

Oh goodness, I've only just joined this group and wish I'd done it sooner. It's such a relief to hear from women in similar situations, so helpful not feel alone. I'm on targeted therapy now and struggling more than with the full blown chemo. Trying hard to maintain normality and positive outlook, but so hard sometimes especially when friends and family are off and about enjoying and planning trips, but I try to get things in perspective and count my blessings and ignore the cancer gremlin sitting on my shoulder.

Saintgermain profile image
Saintgermain in reply to hilaryjane

Hi Hilaryjane,

So glad you found us! I'm a fairly new Survivor, October 2021 and searched and searched for groups a lot of BC Survivor ones but OC harder to find I'm actually in the States but love, love, love this group. I've heard the side effects from the targeted therapy can be difficult my Gyno/Onc and Onc have opposing views as far as an aromatase inhibitor the Onc wants to wait until possible reoccurrence I've tried 2 so far brutal I have my next CA125 next week hoping it stays in the 6's but we all know what a journey that can be. Like myself I'm finding it harder when your newly out of treatment as far as well meaning Friends and Family I'm 8 weeks post hernia repair surgery another hysterectomy gift I'm getting back to swimming and exercise next week pushing ahead finding the new normal I like your analogy the cancer gremlin wish all of us on this site could "flick" him off never to be seen again I hope with time your side effects decrease. Hugs

Kjpip profile image
Kjpip

I had my last chemo 3 weeks ago and am waiting to start on olaparib and continue the 3-weekly Avastin, and already everyone is "oh that's great, you've finished chemo and can get back to normal" - I mean, the drugs aren't even out of my system yet, and what on earth is normal now?! I think lots of people are surprised I don't feel ready to go back to work yet - how can I sit at home every day for 6 months and not want to rush back to normal as soon as I can?! They just don't understand how much the various side effects can affect us physically and mentally, even if we're looking well on the outside. (I would be hopeless at work at the moment, I think I have a combination of chemo brain, covid brain and menopause brain 🤣)

I totally agree that people want to believe nothing is as bad as it really is, otherwise it scares them too much. They think they're being helpful by telling us about others who have beaten (completely different) cancers, and I've even had people tell me about themselves or others who've had successful hysterectomies - I feel like saying yes but did they have their omentum removed as well, and various bits and bobs taken off the bowel, oh and did they have chemo before and after to contend with as well?! They just don't understand as they haven't been through it, I try not to let it bother me and be glad that they can't understand as it means they're well and healthy, I wouldn't wish this on anyone, but it is good to have a rant to someone who does understand every now and again!

Sorry, this seems to have turned into a bit of a rant on my part, I must have needed it!

Here's to us all and our new 'normal'

😊

Saintgermain profile image
Saintgermain in reply to Kjpip

Hi Kjpip,

I am so glad I reached out to you Teal Sisters so many of us that need this support. It is so natural what your feeling its like "presto" everything is behind you like it never happened. I had a longtime Survivor, a Scientist tell me that it takes a year for everything to get out of your system. Its quite the journey finding the new normal I'm 7 months out a work in progress. I say be a little "selfish" all though you look wonderful on the outside the inside is entirely a different thing. give yourself as much time as you need especially to deal with the "3 brains" especially the Menopause one I was 62 when diagnosed so that "ship had sailed" I cant imagine being thrown into menopause and trying to deal with this journey at the same time ugh!

I so agree with you as I mentioned my Friend above I'm happy that she had a laparoscopy hysterectomy and was cured of 1A endometrial goes on an on I hate to sound selfish but I have the 7 inch scar hysterectomy, chemo and most recently hernia repair surgery.

Don't ever apologize ranting is healthy no one understands this journey like all the Sisters on this site!

organicinna profile image
organicinna

I feel almost the same Saint-Germain ))) Except when my daughters sought its all in the past for me after I been given all clear September 21, then when in 6 month I v been told am recurred they probably started to think " o-o-oh " ..... ))) Am 4b xx

Saintgermain profile image
Saintgermain in reply to organicinna

Hi organicinna,

Glad we all have each other to bounce these feelings off of. How did your reoccurrence show up? What is your next course of treatment?

organicinna profile image
organicinna in reply to Saintgermain

How it did show up? I felt some mild pains, and demanded CT scan And scan showed some small progression of the disease. They said its good we got it earlier and its small/ They stopped my Niraparib PARP saying it doeskin work. But disease in the area that can not be surgically removed and its to small to operate. So they put me on 6 cycles of Caelyx every 4 weeks,to see if this will stop progression or shrink it Then they said some trial in the future could be offered.... ))) Tomorrow is my 3d round of Caelyx chemo Its only for 1hr drip. And in 2-3 weeks they booking CT scan again to see if its works or not. But Caelyx works only for 6- 8 month they saying, they another something ))

Saintgermain profile image
Saintgermain in reply to organicinna

Glad you listened to your body even if turned out to be nothing and persevered. I’ve heard Caelyx mentioned many times on this site I’m in the states I think it goes by another name. I will pray that it did it’s job and your upcoming CT scan is clear.

organicinna profile image
organicinna in reply to Saintgermain

Thank you my american friend . Am always thinking about all of us on here xx

Summergold2 profile image
Summergold2 in reply to Saintgermain

It is called Doxil here in the states

Cropcrop profile image
Cropcrop

Oh lovely lady, I so feel your anguish. It’s absolutely a normal part of the rollercoaster we’ve all been on, it never truly leaves us and when everybody else seems to consider our journey as finished we’re silently screaming at them that we’re still in a weird parallel universe.

I don’t think we are ever again the people we were before our diagnosis but, we’re so much stronger and braver than we ever thought we possibly could be and we now all have a new normal. Unless people have walked in our shoes they cannot comprehend the enormity of the whole rigmarole and it’s effect on our psyche. Often comments that, once upon a pre OC time, wouldn’t have bothered us now hit every nerve.

Don’t worry, you’re not alone with this and you’ve got us lot here who totally get it, we’re here to help you as you come to terms with your new you.

Love and big hugs ❤️Xx Jane

Saintgermain profile image
Saintgermain in reply to Cropcrop

Thank you Sweet Sister!

I find it strange that these feelings come out of nowhere but another Sister's response made sense a journey of grief and when I think of it a similar to times in my life that I did go thru a loss.

I totally agree so much stronger and braver not the same but better seeing life as the precious gift it is. You are so spot on the comments do hit every nerve. Love an hugs back at you! Tammy

organicinna profile image
organicinna in reply to Cropcrop

I took a photo of your post and want to frame it.....thank you xx

Litchick profile image
Litchick

Hiya, like all the other ladies I agree. Our family and friends generally just ‘don’t get’ that OC is often a recurring cancer and we have to try to live with that everyday, whatever stage of treatment we are at.I am blessed to have three dear and amazing friends who do ‘totally get it ‘ because of their professional backgrounds in obstetric/gynae medicine and hospice care. The language they use after each different chemo I finish is subtly different . They are positive, supportive and so loving but take nothing for granted.

There are times though when only the ladies on here truly understand. We walk the same pathway together and I am so thankful we have each other.

I do hope that each of us today can see a bit of sunshine through the clouds. If you can’t then vent away - I find a good swear out loud, in privacy sometimes helps!! ( think my family would be truly shocked if they heard me) There is nothing wrong with crying either - it is simply an expression of our feelings.

Love to all. Jan. xx

Saintgermain profile image
Saintgermain in reply to Litchick

Hi Jan,

A true blessing to have three dear and amazing Friends that get it especially with their backgrounds it takes very special angels to be in that field.

I agree my Husband is a good Man but Women are "wired" differently maybe because we have the same parts and although different on the same path.

I love it a good swear out loud releasing anger is a good thing I go into my basement when I have to release have a good yell or cry and then back in the saddle move forward. Hugs

Barmycharm profile image
Barmycharm

Such a relief to hear you say this and all other ladies saying the same. I’ve agonised over this the past three years since my original diagnosis and now facing my first recurrence.

I’m astounded by how little friends and even family actually understand what I’ve been through/ am going through?! I’ve just been in hospital again for removal of suspicious lymph nodes and am waiting results. The experience of being in hospital again, the pain, the worry and now the fear of what’s up ahead all cramming in again. My oncologist follow up for results is Monday 20th and I’m in such anxiety over what’s to come. Yet nobody seems to understand how terrifying it is and how this disease takes away your mental freedom. Friends and family comments oh well there’s treatment nowadays and tablets you can take???!!!! Also I feel that in these days of mental health awareness you can air anxiety about just about anything else but long term cancer you must be brave and strong and not moan or bore anybody? So agree with all ladies comments and feeling on this subject and now don’t feel so alone or misunderstood. Thank you for posting this and giving us all a chance to rant but also share our feelings xxx

Saintgermain profile image
Saintgermain in reply to Barmycharm

Barmycharm,

So glad I touched upon this a common thread among us recurrence always looming.

I am truly a believer until someone goes down this path they will never ever get it. I'm sure being in the hospital stirring up old memories makes it harder It rents space in your head at times takes over. If was easy as taking a pill or treatment or when front line is done it all behind us regardless it still really hurts ones feelings you are among Friends and Soul Sisters here. Prayers and Hugs

Hiya I get this totally. I think it’s normal for you to feel this way. I’m stage 4 & recurred 5 months after frontline. I was 44 at diagnosis. 2nd line only kept the cancer stable for a bit & im now running out of options. I do struggle with posts from women declaring “1/5/10 years NED!” Or survivors of other lower stage cancers in long remission framing it as some kind of battle that they have won rather than simply good luck. BUT at the same I feel ashamed for feeling resentful of people who have every right to be celebrating because it IS a great thing. Surviving treatment can be an achievenent in itself for many. I wish none of us were in this position at all & that not recurring/NED was no longer a thing.

Saintgermain profile image
Saintgermain in reply to

Hi Errin,

I think its natural to struggle with posts 1/5/10 years NED as truly happy as we are for them It would be wonderful if OC followed a clear cut path that's the hard part even in today's day and age the experts don't know why some Survivors reoccur and others don't with the same diagnosis you would think they would have figured it out. It doesn't seem like any diet or Vitamin is a magic pill, I try to eat a plant based diet and exercise every angel has its off day you have to treat yourself. I personally know a 35 year Survivor that ate what she wanted its all confusing. Don't be so hard on yourself feeling envious of other Survivors completely natural if one my close Friends a 1a Endometrial Survivor compares herself to me one more time I think I will surely scream. Your among Friends here!

Lochawe profile image
Lochawe

Yes Saintgermain, I can relate to this, almost to the extent that i prefer getting scan results etc alone, because I can't bear people's optimism at the smallest bit of "good news" which to me is usually not"good news" but just not bad news.. and same with talking about side effects of treatments.. its hard.. I agree with other posts in that keeping to forums where people DO know what you are going through is more helpful, and counselling too. Good luck on your journey

Saintgermain profile image
Saintgermain in reply to Lochawe

Hi Lochawe,

I understand completely wanting to go for your scans alone I actually prefer it I went thru chemo alone my Husband dropped and picked me up he's well meaning but I preferred to be by myself I feel you need time to digest. I'm finding my way keeping to this wonderful forum and my local OVCA chapter have attend 1 brunch it was very nice everyone hugged like we've know each other for years. Thank you Hugs Tammy

Lochawe profile image
Lochawe in reply to Saintgermain

oh, I am going to check out a local chapter now! best of luck tammy x

Saintgermain profile image
Saintgermain in reply to Lochawe

Thank you best to you also!

Joanne59 profile image
Joanne59

Hi, I think we all feel this to some extent, I went back to work and it felt like it was all forgotten. It’s hard after such a trauma to come to terms with it all and move on with the fear every day it will recur. Just be kind to yourself,I have regular massage,facials etc reward yourself for your bravery.good luck 🍀 x

Saintgermain profile image
Saintgermain in reply to Joanne59

Hi Joanne,

I agree I'm sure its very common and familiar I think the fear is the hardest part and not letting it take over especially at night I try to keep everything that I watch and read on the light side yep pampering is in order especially a massage. Good Luck

purfekt10 profile image
purfekt10

I had a friend who had a different, but equally as bad, cancer and we connected very regularly. That was such a big help to both of us. I also have an exceptional oncologist who is very supportive. We exchange the latest ideas about how to tackle this cancer. This group is very supportive, as well. It's been 4 years since my cancer was diagnosed and, currently, there is no evidence of disease with my CA-125 at 5. I was originally diagnosed with 3B cancer.

I'm praying that you find supportive people as you navigate through this new phase of your life.

Saintgermain profile image
Saintgermain in reply to purfekt10

It’s wonderful that your Friend and yourself leaned on each other it’s also a huge blessing to have an Oncologist that listens and is abreast of the new treatments. This group is wonderful I read your profile I wish you many more years of being NED. Tammy

thejoannabell profile image
thejoannabell

I don’t have much to add but I just wanted you to hear from yet another person that has definitely felt that way!

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