Highs and Lows ... WAVES of whacky emotions..

LoriB

Hello. I've been floating through so many discussions and thought I'd say hello.
Im 28, I received my positive BRACA result AUG 2017, and early sept I found I have a stage 3 triple neg invasive ductal carcinoma in my left breast. 

I think I'm ok, then I cry for 2 hours. 
I google my diagnosis, then I start writing goodbye letters to my family
I love my support network, then I feel angry about my diagnosis and my healthy lifestyle change I made for nothing and go out and eat a big whopper with cheese. 
I love my partner, but I get upset when he tries to console me because he isn't having his breasts removed, he isn't going to have to have his ovaries removed, he isn't going to lose his hair... I feel selfish for saying it but i feel so unsupported even though I have so many friends and family members by my side 

I just need need to feel like I'm not the only one who is going mental over a diagnosis - of any kind

im not normally such a Debbie Downer either. I just need to vent to someone who actually is going through something similar 

onemargie

Hi there Lori. Last year in may I was diagnosed with stage 2a grade 3 (3cm tumor) left breast triple neg bc aged 43. All scans clear and no lymph nodes involved. I'm negative for the gene though. I had 4 rounds of AC chemo and 4 rounds of paclitaxol fortnightly for 16 weeks. I had a mastectomy left side so I didn't have to have rads as well as chemo and then took the right one off - my choice 6 months later. I've already had a hysterectomy prior to my bc diagnosis but saved my ovaries All of us on here all know what you're going through for sure. And yes you can have all the support in the world and I did and still have  but it always helps to talk to someone who's been through it too for sure. You are going to get all of those emotions you mentioned and some days are going to be better than others. I found once I'd had my surgery and had a treatment plan in place I felt better and knew what to expect. It's all very daunting at any age but particularly for you as you are so young. And please don't ever say you are selfish that's bullshit everything you are feeling is normal. There are so many options out there for you and you will be informed of those in due course but a lot of women on here have been able to have immediate reconstruction and been able to save a their eggs too. So don't despair you will get through this.  And please don't google!  Especially about triple neg. everyone one is different and every treatment is different and that's the worse place to look especially feeling like you are at the moment. And yes it sucks to go bald and it sucks to lose your boobs but at the end of it all you will have survived. And that my love takes strength courage and the biggest set of hairy balls you'll ever see. And believe me you will find them when you need them. Please stay in touch. Everyone on here has s story to tell all of which are inspiring and gives you hope. Rest assured you can vent anytime ask anything you like and say however you are feeling whenever you want and never get judged. Just loved and supported. Sending you a big virtual hug and feel free to message me anytime with any questions and I'll give you my number if you ever want to chat. Margie ❤️

[Deleted User]

Hi @LoriB, I felt all of the emotions you mentioned when I was first diagnosed. It’s a bit of a roller coaster, isn’t it? I just tried to take it day by day. The Cancer Council have wonderful nurses to chat to and counsellors to see if you need them. They helped me get through the low times and I could be honest with them without the worry of opening up to family about my fears about my mortality, hair, sexuality etc.
 I also set boundaries with my family and let them know that sometimes I needed time to myself and that meant going to some appointments alone. This helped me to have some control over my life at the time. 

 I also found it easier when I had made my decisions and could just go through treatment. Can you do something you enjoy, or plan for it? I found this helped me, even going for a short walk helps you to feel better.

 I know younger women have a tough time with breast cancer. I was doing my Master’s degree, about to buy a house and was in a relationship and all that changed when I was diagnosed with cancer. I am now returning to study, dodged a bullet with the ex and I’m looking at buying a place and somehow managed to get a promotion. All when I haven’t been at my best. This is just 3 years later. I have side effects from treatment, but apart from being on this forum too much, I’m doing ok and you will get back to your ‘new normal’ down the track. Have you joined the young women’s group on here?  Take care x 

AllyJay

Hi there @LoriB , so very sorry that you've found yourself here. You asked a specific question, that is, are you the only one who is going mental over a diagnosis? Well, no...I don't think so...I'll stick my hand up as being able to identify with much that you have written, and some that differs. I won't patronise you with pats on the back, and assurances that all will be fine, because what your intellectual response and you visceral response are not one and the same. I remember feeling totally shell shocked on hearing that I had cancer. I looked around at all these other 'normal' people around me, doing normal, mundane things. How dare they!!! How dare they grocery shop, buy shoes...shoes for fuck sake, who the fuck needs more shoes???!!! I'm quite possible going to die sooner rather than later... and this silly bitch is buying shoes!!  And don't dare try to cheer me up with all these positive statistics either!!! The feeling that my reality and theirs was so very different, and I felt so alone. I have often found that rewording a situation, or reversing it, give a clearer perspective. If someone went up to a virile, healthy 28 year old man and said, "Ahem, pardon me, your life, as you previously knew it, is about to change, big time. You have cancer in your nuts. But never mind, we'll just chop them off and then put these little silicon balls in their place...you'll look quite normal afterwards. We'll poison you to the point that even your spit will be toxic to others around you, but it will help kill these bastard cells. Oh, and we'll also nuke you, just to make sure." If that poor sod didn't (initially) feel that they were going to lose the plot, then I would truly be worried. The fact that that bloke didn't feel as if his world had tilted on its axis, would be worrying in and of itself. That would not be normal. Having said all that, after the initial shock wore off, I shaved off my previously thigh length hair, to a Marine #1 cut, put on my "Fuck You" boots and prepared for battle. I'm still battling, one bastard situation at a time, but, hey, I'm still in it....apparently no evidence of disease, cancer wise. Pretty stuffed with side effects, but getting there, slightly fluffy head, stuffed up this, that, and the next thing, (physically), and mentally sometimes feeling like a lost fart in a haunted shithouse from chemo brain, but still here, flying the flag. You can do it kiddo, and this woman here is holding your hand while you do.

[Deleted User]

Everyone is so different, aren’t they? I wasn’t angry when I got cancer, I was sad.

I never had the f#%* cancer attitude because the negativity wasn’t good for me. I just mentally treated it like a broken leg, but with more serious consequences. I have always tried to avoid a victim mentality and this has helped me to regain my momentum. I have had low moments, but ultimately this is the one life we have. It’s not like other people’s and that’s ok. It is what it is and I prefer to face it head on, deal with it and try to move on. Negativity is a pit I try not to fall into. Sometimes getting off social media is an option through treatment too. @AllyJay when men get cancer it is every bit as traumatic as it is for women. 

AllyJay

@LucyE, interesting response. I certainly don't personally have a victim mentality at all. The point I was making is that the initial shock can knock you sideways, particularly the fact that everybody else around you has a normal life, and that yours has changed so radically. The week before your diagnosis, you might very well have been buying shoes, but now??? The word picture I was trying to draw with the man analogy was that were that to happen to a man of the same age as LoriB, and that metaphorical man was not shocked, indeed stunned, by the situation, that would not be normal. Man, woman, young older, it doesn't matter, it comes as a shock to us all. I have to say, for myself, if I was thirty years younger than I was at diagnosis, yes, it would have had different implications, and I wouldn't have had the extra life experience that I had at 58, by my goodness, my body would have been younger and fitter to fight this. This is not a pissing contest as to whose situation is worse, it sucks for all of us. Some cope with soft music and Kumbaya, others do the combat boot thing...whatever works for you.

[Deleted User]

I wasn’t directing the victim mentality comment at you @AllyJay. I know what you mean, but sometimes the negativity can drag us down. I was sitting in the sunshine by the beach when I wrote that comment.

My oncologist told me that only unhappy people are on forums like this. I disagree with him, but I do come on to have whinge. I guess I was just trying to say that life does return to a level of normality. I have scars, but I also have options and I guess that was my point. If cancer comes back, I’ll deal with it. The moment I was shopping and realised I could soon be dead was a profound moment for me. I survived that and although the issue of dying is always in the back of my mind, I have a place mentally for it. I also try not to keep a mental shopping list of crap things that have happened to me. These are my mental strategies. No two people are the same and that’s why I like it on here. All the best with your treatment. x 

onemargie

Lori eat as many god damn bloody whoppers as you like lovey. We all should. I personally don't eat enough of them.

[Deleted User]

@LoriB &  @onemargie I once saw a guy wiping his nose on his apron as he was making a whopper at Hungry Jacks here in SA. It’s put me off for life!  

primek

I was angry with myself when diagnosed that I hadn't sorted out my genetic risk before I developed cancer but I needed to qickly forgive myself as I had done what I could really.

I get the feeling of being alone and the very real fears that we might not make it. The supportive people saying "you just got to be positive" is enough to send you screaming through the house. It doesn't help. You are scared and angry and just so damn sad. Cry if you need to my lovely.  It's not a sign of giving up or being weak just being sad for you and this assault on your life. And that's allowed. And you will pick yourself up and fight the fight for your life amongst the tears. I personally think it's  much healthier than just pretending it's all okay...it's not okay. But it just is how it is.

So bite your lip when you feel like screaming at them. Let the tears flow when you need. And we are here when you need to talk to others who do just get it. 

And as to google and tnbc....so many survivors out there they don't talk about so regardless of those stats start having the belief you are one of those that will beat it. As many many women have.

Kath x

Mrs_H

Hi @LoriB, what a crazy roller coaster this disease puts us on. I'm 29 with triple positive BC in both breasts and spread to right lymph nodes. I've just finished 5 months of chemo and gearing up for a double mastectomy in November, 4 days after my 30th birthday.

I find myself nodding along as read your post, yep, been there, felt that. I still find it hard with the "stay positive" attitude I get from well meaning friends and family but I can't avoid my reality. This situation sucks. I wish I didn't have cancer, I wish I didn't have to have the chemo, I wish more than anything I didn't have to have my breasts removed. Yes, they can just bolt new ones on but it's not as simple or as walk in the park as that sounds. Well meaning people who say that have never had to face it.

Feel what you feel, ride it out and your acceptance (for lack of a better word) of the situation will get better. The carpet has been pulled out from under you, of course it's going to take time to get used to the new ground. However, you will manage however you can and get through it. No one knows what will come later but for know don't worry about that, that's future Lori's problem.

I still have lots of ups and downs. I cry. I laugh til I cry. I make lots of inappropriate jokes about my mortality. I just do what I can to get through it and gently remind my family and friends that this is what I need to do to cope with this crazy situation. We're all here for each other. Cheers, Jen.

onemargie

Ok so have as many whoppers as you like as long as they arent from that hungry jacks in south australia.

Zoffiel

The 'stay positive' line is, without a doubt, the most irritating thing anyone ever says to me. I'm convinced that a positive attitude--or a good performance that mimics one--doesn't help me at all, but it does make the people I deal with feel better. Sometimes I'll play nice, sometimes I wont.

I'm a year on from being told I had a recurrence and have finished active treatment and am now wrestling with the aftermath. Am I unhappy? Nah, not really. I've never been a ray of sunshine but, like most classic clowns, I have a very black sense of humour that helps me cope when I'm pissed off--which is a good deal of the time. Being an Olympic grade old grouch has it's advantages; I don't suffer fools, have no problem calling bullshit when I encounter it and rarely have to repeat myself when I want someone to stop doing something (that can be because they are disappearing into the distance in a cloud of dust, never to be seen again)

You know, I don't think cancer really changes who you are. Once you get through the grief and loss process you will revert to coping with your disease the same way you have always coped with adversity. For some that means transferring responsibility and authority to someone else, others stick their fingers in their ears and chant 'la la la' and others figure out how to adapt themselves to the challenge. Classic personality type stuff.

It doesn't really matter in the end which approach you take, you will figure out a way of 'finding' yourself again. It just takes time.

Seeing a counselor can be really helpful. It may take a couple of tries to find someone who 'gets' you but it is worth the effort. Don't stay with a counselor who doesn't suit you and don't worry about offending them if you aren't comfortable--this is all about you, not them. Being able to unload on someone who is not going to take it personally, or worse still throw it back in your face at a latter date, is invaluable.

Good luck, Lori. This is a good place to vent. As you have seen, it takes all types to make a village and this is a pretty diverse community--you will find many approaches to the trials and tribulations of enduring breast cancer and will come to realize there is not right or wrong way to go about it. You just need to find your way. Marg xxx

kezmusc

HI @LoriB,  You are not selfish.  This is an absolute bitch of a thing,  but take heart.  Once you have a  plan in place you will be surprised at how strong and resilient you are and thank goodness you've found the rotten thing now instead of later. 
But of course l have the benefit of hindsight and having been through much of what you are about to encounter.  Doesn't make it any easier for you right now I know.

Those first few weeks are a storm of uncontrollable emotions, from feeling like, I'm gonna kick this things butt, to being a babbling mess the next minute, then just going totally numb for a while.  I cried so much in those first few weeks that I actually ran out of tears. Everytime I had any kind of memory of something I had done in the past, it was like, well that was before breast cancer and would make me sad. Dealing with mundane reality like grocery shopping seemed ridiculous.

Hopefully this is not too long winded but you need to know that it will be ok and it is ok to feel like you are at the moment.  You will come to realise that you are stronger than you ever thought possible. Unfortunately a lot of what you read on google is worst case scenario, all the side effects and things that may happen.  It is much rarer to hear from the people who didn't get many, I am sure they are out there back enjoying their lives, we just don't hear from them as often.

As hard as it is...Get off Google.  We know you wont 
I remember my initial diagnoses was on a friday.  The pathology test said "highly suspicious for metastaic breast cancer" I started googling that the next day and pretty much planned my own funeral!  After googling myself to death this is what my brain had come up with. 

I was going to have one breast, be bald, fat (chemo side effect) with lyphodema and no sex life from here on because of the hormone treatment, plus, of course, I was going to get every other side effect I read about!
I remember receiving the "my journey kit"  I took one look at that very uninspiring piece of underwear (Jeez, could they at least make it white or put some lace on it or something) and collapsed in a heap..  My husband saw how upset it made me, packed it up, stuck it in the back of the wardrobe and that's where it sits today. Untouched. I found the best info was here from people who have done it and made it through the other side and are back on track.  

Although my diagnosis was different to yours (and I am a bit older, 45) some things may turn out not as horrible to deal with as what you first think.. Hard to believe at the start, I know.
I have a close friend who had triple neg stage 3.  Super aggressive.  Diagnosed on the Friday, in surgery Tuesday.  She had a reconstruction and reduction of the other breast (very large boobs) as soon as she had recovered from chemo. Had eggs frozen prior to chemo as she wasn't sure if she had finished having children yet. Sh'e just passed 8 yrs cancer free! 

The worst thing I found, is feeling like you have no control. 
I remember a wise woman saying to me,  you need to be one step ahead with your planning so nothing surprises you. Good advice.
 I also remember another one.  You are the pilot of this plane, put yourself on auto for 12 months and fly through the storm.   My mind was like, yeah yeah more positive analogies. If I hear one more I'm gonna be sick. I still don't want to deal with this. 
Unfortunately we have to accept the situation as there is no choice. Once you are at that stage it becomes a little easier I suppose.
 Plan and ask a lot of questions, ask if there are any options.  You'll fell like you are somewhat more in control, not breast cancer.
I went by myself or my breast care nurse came to my appointments,  not my family as they got too upset and I couldn't focus.  It was easier for me without them there.  Family and friends will always give you the positive talk as they don't and can't know how you feel. Nor do they know any other way to help. Especially the men in your life. Bless them.  

Look at your options and chose what's right for you.  There are ways to keep your hair.  I did and believe me that helped a heck of a lot dealing with the outside world.

 95% of the time now I feel the same as I ever did before and the other 5% of negative feelings I try to ignore or beat back into submission.  I went for my surgical check up last month and the surgeon said.  Wow, you look like nothing ever happened to you.  If he only knew:)

Keep in touch.  Massive hugs sweet.  XOXO

iserbrown

@LoriB   welcome to the forum, the one that none of us really wanted to join but are grateful for. 
I think to how I would've been at your age, 28, yes I was always a confident person but I think it would've knocked me for six.  Now that I am older when I was diagnosed it was a case of a gulp, okay, what should we do next and let's get on with it!  Acceptance is a huge part of being able to cope with treatment! 
I can see by the posts above that it has stirred a lot of emotions in us all in how we reacted and still reacting to what lays ahead or where we have been recently!
If you haven't done so may I suggest that your order the My Journey Kit - it's free and there is lots of good information and opportunity within to keep a diary and track of costs and appointments et cetera

https://www.bcna.org.au/resources/my-journey-kit/

Also on here there are groups and there is one that you may benefit from - Young Women

http://onlinenetwork.bcna.org.au/group/10-young-women

Check out BCNA website and you'll find some good resource information as well as a phone number for counselling, they will give you some coping strategies.

Your focus has changed and it is now about getting control of BC - we're all in this together supporting each other through.  Sending you a virtual hug, please take care 

[Deleted User]

@Zoffiel, but what if you do have moments of positivity? The ups and downs often do have elements of positivity.