It’s not over yet !!!

Hi ladies, having been told my Cancer is back & pursuing new treatments I found it tough telling family & friends. But what is different than first time is I have noticed people are more ‘negative’ and give me that sympathetic look that makes me feel it’s all over! how do you all cope ?

[Hidden]

I’m in the same boat and can totally empathise with you. I’m not telling a lot of people until it becomes obvious because of that reaction. It’s really not what we need is it!

Good luck with your treatment Scotty22, I’ll follow your post as I could do with top tips too.

Lisa x

[CallmeMum]

Tell them why you’re still here breathing, you’re fighting until you can fight no more so rather than feel sorry and negative let’s get on with it!

[Mptelesca in reply to CallmeMum]

Yep! There's my girlfriend across the pond!

[Yoshbosh]

I’ve found people are generally less bothered this time around. When I was first diagnosed in 2016, I could barely move for the amount of well wishers that came out of the woodwork. This time around not even a fraction of the people who were interested the first time have been remotely concerned. I think they think, “She’s done it before, she’ll do it again” but it has been far lonelier this time.

Good luck with your treatment.

Vicki x

[airfemale in reply to Yoshbosh]

Yes yes that is exactly what people have done to me. Different country same people. X Sharon

[Julie40 in reply to Yoshbosh]

I experienced exactly the same and I was 3rd line, in fact it was said on more than one occasion that it would be “no bother” to me. Seriously had to stop myself going ballistic. I tried to explain how tough it was and that 30 chemos later I was exhausted but nope same thing said that I would be fine sure you’ve done it all before ....

When I was first diagnosed and given 6 weeks it was a different story. Now I’ve cooed and still alive I think some family and friends must think I was exaggerating lol If only 😢 xo

[Yoshbosh in reply to Julie40]

I suppose it’s nice that they aren’t worrying as I struggle with other people’s emotions over my diagnosis, but I do wish that more people had stood by me through my treatment.

[Lindaura]

Dear Scotty,

I really feel terrible that you are embarking on the second phase of your journey and folks seem to already have "compassion fatigue" or they seem to have lost the energy to be supportive.

We have 100s of ladies here on this Ovacome site that have survived long into the future after one or more recurrence and the medical system is always looking for better ways to treat us.

Fight on! And hold your head up high.

X Laura

[TAROUZA]

How many times you had recurrence?

It is my fourth recurrence after my initial surgery and treatment 2011 and im positive

There is nothing to say over it is the will to struggle and to be strong

Good luck to all of you

Tarouza.

[Lyndy]

Haha! Yes recognise that one Scotty....people look at me as if I am in denial when I talk about doing more chemo and getting back to NED!

I talk about how they manage OC as chronic disease...then they really think I’ve lost it....🙄

[Mptelesca in reply to Lyndy]

Lyndy! I just recently had a conversation with a couple of people at work (once I became enlightened on this site) and told them it was just like a chronic disease which I would just have to stay AHEAD of! It was like I told them I just landed here from Mars. I get questions like "how and why did it come back?" I thought they took everything out?.....almost making me feel like I actually did something wrong and invited it back in.

Stay strong and well!

Marisa

[julia8163]

Stay positive, I want to wish you all the best.

[Mptelesca]

Hi, Scotty22. So sorry to hear it's back, but, you will get ahead of it and kick it. I just completed my first round of Chemo. I had OV in 2015 Stage 3 and just a month ago my numbers jumped slightly. I rec'd a Catscan and told I had a small spot to deal with.

The first time I was diagnosed, everyone was in shock, mourning, crying, etc etc. (mostly my family). Now that it's back, I am getting those long, sad, drippy stares from people and I can read their minds...they're practically saying "this is it" for me. I almost had to convince a few people I was OK and not going to die. It's weird. Was looking for some words of wisdom or support. My family has been wonderful, but, I've had to convince them I'm ok. lol. My husband has been quiet because he is just waiting for me to lose it and go screaming into traffic. Not at all. I found this site looking for answers and I got them. Everyone here is lovely and give real sensible and many times hilarious advice. I love them all.

My lesson here was that I will never say "I am cancer free"...I will say I am living wonderfully with cancer. I stay ahead of it.

So many wonderful researchers, Doctors, nurses and especially our sister OC friends right here on the board offer all we need. We just have to get ourselves to the Dr. when we are supposed to.

I truly hope this helps in some small way. I hear you all the way on peoples' reactions. Pay no attention. They are just scared. We are not scared...we got this and know how to get rid of it.

My dr. actually told me that they were going to examine the tumor they took out and test it for any mutations. In just one year, advances have been made on customized treatment rather than the one size fits all. If you read through everyone's posts, you will see this.

Wishing you the very very best!!!! You're gonna do this.

Marisa

[lorraine71-Australia]

Hi, Scotty , Good advice as usual from our ladies I had 5 different treatments in just over 3 years so feel like it never stop as soon as I stop chemo off it goes again I live in hope for a decent break, my family know what is going on, when a friend or acquaintances ask how I feel just say I'm alright unless they get me in a bad day then tell them how I really feel.

I know I should not but it's hard sometimes to smile and say I'm ok I feel good when you don't.

So go with your feeling and never give up ..Take care Lorraine xx

[Hidden]

Thank you ladies , all of your stories inspire me & I like the ‘chronic illness’ idea I’ll use that to try & explain what it is like especially to my friends who already have me 6 foot under LOL

I tried to explain it today to someone who likened the experience to ‘leaving your job your workmates collect money for an expensive gift , you then come back to work & they’re thinking hang on we already gave her something & she shouldn’t really be here’ I could see a similarity to some of the reactions I have received.

Anyway good luck ladies on each of your journeys (sorry I hate that word but couldn’t think of an alternative LOL) xx

[ellseybellsey]

I am dealing with the same thing, trying to explain to all that it is now dx chronic but can be treated.

Ellsey xx

[AndreeP]

I got those looks when I initially told everyone bc I was diagnosed stage four. I find sometimes just mentioning the word “cancer” is enough to scare people off. I guess they mean we’ll, but I agree just so depressing. I have to reassure everyone that I have cancer, I’m not dying. It’s something I live with, that I can’t change, anymore than I can change being born female or being short.... it’s my new normal!

[AlaNtO]

Yes tell the close family as the word will definitely travel. After that on a need to know or courtesy basis (when they ask). What to say is nicely covered by these contributors. Second time around has all sorts of other problems- is your body able to cope with a second round? Did the Onco make a mistake in choice of drug? Best wishes.

[bamboo89]

Having been on this ovarian cancer journey myself in the last few months, I learned that, unless you've had cancer, you know very little about it. 'Cancer' is a general term covering a wide range of cancerous disease, and saying cancer is about as specific as saying 'plant'. For those who aren't into plants, there are zillions of them, and they're all different - just like cancer. So its perceived as something you get treated for and get rid of, or it kills you fairly quickly. The idea that people live on with cancer (like diabetes or kidney disease) is quite alien to people who've never had dealings with it And that word 'cancer' strikes fear into most people as soon as they hear it, so the compassion we all experience the first time we say we'e got it is usually at a very high level; but the second, third or fourth time? No - they all thought you'd dealt with it the first time round...

If I'm honest, one of the most irritating things I've experienced has been people saying blithely, oh, I've got an uncle/aunt/friend who had cancer and had chemo and they're fine... Whilst that may be true for some cancers, and those caught early enough, I want to snap back which cancer precisely, what stage was it, what chemo did they have... and they are rarely able to answer, even if I ask the questions calmly. So there is little understanding of the term 'cancer' being almost an umbrella term. Ovarian cancer at anything past Stage 1 means on ongoing fight, and I really wish people understood that - but then, why should they, really, I don't really blame them for not wanting to connect with it. I didn't before I had it myself...

But thank goodness for this site - you will get support and understanding on here, even if there's not much available elsewhere after recurrence. I wish you well.

[Seasun36-uk]

Hi Scotty. It's funny isn't it that we have to educate people...instead of receiving support. OC is unique & so are we! Xx hugs xx 🌺

[Susantnbmtl]

I found my faith is stronger and talk to the Lord a lot , it is hard finding someone who knows and understands how you feel

It is a walk you truly take alone but it is your walk ,,,invite who you are comfortable with 🙂 prayers and hugs..

[Irisisme]

Hi Scotty,

It looks like I may be back on chemo myself soon (2nd) so what you say is interesting. I hope it goes well for you. I don't know if it makes it any difference that I was never NED, I suppose I'll find out how people will be with me very soon.

Here's wishing you vomit-free treatments!

Iris XX

[Hidden in reply to Irisisme]

Hope your treatment goes well I’m having a heart test Monday because he chemo they plan to put me on can affect the heart so they need to ensure mine is working! It’s all a trial but we have to deal with it Keep strong xx

[Irisisme]

Good Luck ❤️️

[Rlenesue]

Do you mean being triple negative? That would explain the looks, but it's not over.... it's just a different journey