very very newbie - Im good.. or am i?

maureenz

so im new to a diagnosis of  breast cancer- i am single with 2 children recently left home-  Right from the get go 4 weeks ago i thought there were issues- with country living i have had bumps and thumps to my boobs - horses, cattle drenching- kids jumping up etc etc- despite being on the small size- when i felt a lump (not a pea like they say) and a bit of pain- i thought if it was still around after a fortnight i would see my GP- but i knew it wasn't good- after a biopsy etc etc and a visit to peter Macalum- i know i have grade 2 cancer with hormone receptors in there geeing it all on- 80% of breast cancers are like this - no good or bad news but knowing i didnt self check every month..... im lost in all the information and reactions to it........ i thought - I'm fit, well and healthy i can do this - its like having a badly busted leg that needs corrective surgery and follow up medical 'stuff'- but then talking to my family (8 brothers and 3 sisters) its like the C work is a death sentence...  my sisters are the worst- 2 have been very lax in returning monthly calls or texts - now ring me 4-10 times a day... i even had a male friend (and only a friend) finding it the opportune time to ask me to 'feel;' it - i am so so so so angry!! not about the cancer but about PEOPLE!! 
i dont need sympathy - i told my sisters so they got themselves checked out- the male friend only happen chance saw my breast cancer kit on my kitchen bench and felt it a good time to go in for the 'feel'- i have only told close family and close friends and they are suffocating me!! then they tell me i have to understand people care for me and i have to allow them to do that........ i cant believe that something i want to deal with internally first has been made to make me feel selfish.
yes i am now a little worried after reading the information in the breast kit and the journey i may have to take and from the reactions but i want to yell and scream - its bloody cancer - its not who i am or what defines me- i even got edgy with the specialist who suggested breast conserving surgery rather then a mastectomy because his experience was that women 'regretted it' later (rather then me thinking i could by pass radiotherepy). I was thinking - who are you to tell me what i think.......
I am so angry and frustrated about those around me i dont know what to do - i dont want to answer the door, the phone or visit friends because im already sick of the sympathy and long talks about illness (where i am usually the listener) i spent the last 2 nights camped out in the forest with my horses to get away from it all and i get back to 'how worried everyone was'........
I cant give sympathy anymore to all those that need caring about because they are caring about me- has anyone out there dealt with this? i live in the country- am use to time on my own and not having people around - i am an introvert in all honesty- and i feel like i am drowning... i am trying really hard to give everyone a job so they feel like they are included but i am feeling so exhausted with dealing with everyone else emotions i dont even want to get up in the morning and dumb arse things like peter Mac ringing up saying they cant fit me in accommodation when my procedure happens, or no 'miss' title to any of the paperwork bring out the tears - what is going on and how can i bring this all back into perspective? Help 

Butterfly 40

@maureenz I am really sorry to hear your anger and frustration. I am glad you find this network to express your feelings. You are not alone, we all have been through or are going through what you are going through. There are many inspirational people here can share their experiences with you and help you through this difficult time.

 I was diagnosed late December last year. I only told my direct family members before Christmas, then gradually told other family members and friends. It allowed time for myself absorb the diagnosis. I certainly lost a few family or friends, also gained a few new friends along this journey. When they give advices about diet, exercise, spiritual or natural therapy .... I appreciate that they are in good intentions. I don't necessarily take their advices.

It hasn't been an easy journey for me, I had lumpectomy soon after my diagnosis, now I am waiting for double mastectomy in the coming Friday. i had times so frustrated and unable to make decisions. I believe to trust your treatment team and also do your own research to make the best decisions you think is the best for you. You will feel better once you have your treatment plan. It's easy to say, but take one day at a time has worked well for me. 

All the best, hope you feel better soon. 

Big gentle hugs for you xxx 

Unicornkisses

Oh, @Maureenz it is so hard to get through the "telling the news " time.
I also have a big, concerned family. Their idea of being supportive was to ring me one after another after every appointment or hospital visit.
I told them all that phone calls tired me too much and that I would keep them all updated by email.
I did this at first twice a week while there was lots to tell and then weekly, and now about every two weeks. That way I got to say things once and could just keep to the most important things.
My phone is always on answer phone anyway and if I don't feel up to it I don't answer.

The concern does abate a bit as time goes on, they get back to being concerned about their own life and as long as you keep them in the loop you might find they give you some space, if not tell them you need it!
You have lots of things to process and make decisions on and you need time to do it.
If there is one thing I have learned since being diagnosed it is to say what I need, nicely if possible, and bluntly if necessary.

It is not uncommon to find that you are the one being strong and supporting those around you. But don't feel you have to.
This time you have to look after you. If that seems selfish, then tough buns.

They can look after themselves, yes, your diagnosis is confronting but that is for them to deal with.
You have enough to deal with.
I protect my elderly parents from the worst of the treatment sideeffects and how I am dealing with it, they are old and frightened for me and I don't think it is good for them to worry.
The rest of the family can deal with their feelings about it themselves.

Early after diagnosis is a confusing, frustrating, panic striken time. 
Digesting all the information can be emotionally draining, so take it as slowly as you need to, and stop when it gets too much.
You will find as you go along that it gets easier to process the information, and that more things make sense.

When you are making decisions about your body, go with your gut feeling and don't be swayed by other people's opinions.
If you don't feel you want the risk of breast conserving surgery, then say so.
It is your choice, your risk and your life.
Knowing what is best for you can be hard to decide, we make the decisions based on what information we have and then we have to be guided by the experts, but ultimately we make the decisions we feel we can live with.

Take each step as it comes, it is less overwhelming that way.
Come back here if you have questions, ask your breast care nurse if you have one, and gradually everything will start to become more manageable.
Getting away with a horse also helps! Mine is the best therapy I could have, when I am with him, I almost forget I have cancer, to the extent that I whip my turban off in annoyance when my head gets hot, only to realise with a start that I am at the Agistment place (I have no hair).

Good luck with finding your way, I hope we can help make it easier for you here, 
Jennie

iserbrown

@maureenz sounds like you need a gatekeeper so that you can manage.  The gatekeeper whether it be in person or a private facebook post (I think this is how @primek managed) will keep most informed but allow you to spend time in your own environment and deal indirectly with the well meaning and directly with those that you want to.  Last thing I would want is someone wanting a feel, bad enough that all these specialists poke and prod!  Mind you I'm used to that now and mindset is such wow aren't they thorough and thank goodness they are!
I prefer to have someone around me who doesn't say much rather than someone who is over the top giving advice about if you drink this tea or make this green muck everything will be fine.  That is nice but I'm not on a crash diet!  I'm on a life saving expedition.  Trying to knock off this unexpected visitor called Breast Cancer before he decides to outstay his welcome!  (note to self why did I refer to BC as male?)
In the fog of it all you will find yourself and the fighting you and you'll give it a good shake with a great team.  You need to put faith in your medical team and worry less about family feelings.  Give family and friends domestic tasks so they feel like they are helping, meals for the freezer, laundering (you won't be able to carry the weight of washing or hanging out for awhile), feeding animals, firewood et cetera  They will be happy they are helping. I found Coles online shopping was great, had it delivered to hubby at work and he'd bring it home!  I'm also fortunate that we are a team and he just took on the cooking et cetera and was always happy when a visitor had called by with Shepherds pie or soup or cake or something!
The emotional side is private and we are all here.  There is always someone on the forum no matter what time of day or night that will give you a boost or an answer, we all get it and we don't judge, so vent away!  As you settle into this site you will find lots of good discussion that may help you.  If you're stuck @Jess_BCNA or @Cosette_BCNA will help you or point you in the right direction.
Take care

Zoffiel

Gives you the shits, doesn't it. People mean well--most of them--but you still want to slap them.

The constant retelling of the same details is just exhausting. I'm notoriously grumpy which means no one is surprised when I tell them I don't want to talk about it. I've told the less well meaning to 'Make something up, you will anyway'.

 Ive done the whole cancer thing twice and both times I've found the initial weeks the hardest. This time not so much so as I've kept it pretty quiet, but the first time I thought I was going to end up slaughtering some one. Any one. The next person who opened their mouth... My mother rang all her friends and told them then they started ringing me--I don't know these bloody women, WTF am I meant to say to a pack of inquisitive old trouts? 

Anyway, as Jennie said, things do settle down. Don't let anyone who pisses you off hang around; most of us have a couple of unpleasant surprises when it comes to who is useful and who is not. The flip side of that is you will find support in unlikely places. Like you, I got really angry with surgeons and health care folk who said stupid things to me. That's fine. Sack them and talk to someone else. You can always do that, even in the public system.

Marg. 

Zoffiel

PS, that woman in charge of accommodation at Peter Mac was less than helpful with me too. Give her another ring and tell her to do her job, she can find you a hotel room. Rip an unhappy Patient Feedback form through to them online. For a new hospital there are some access issues that they need to address.

rowdy

Welcome to the site and vent away. I found it funny at times at how some people coped with my cancer. Most were suppportive, but some told me horror stories, or told me how strong I was was. I think most don't know what to say and secretly thinking thank goodness it's not me. I never had anyone wanting a feel, I think I would have stood there shocked if someone did this to me.
We are here for you, one day at a time, take care x

primek

I can remember talking with a friend (who is a Dr I might add) who was a blubbering mess on the phone and I ended up supporting her to cope with my breast cancer diagnosis. Lets just say I avoided contact with her a lot after that I quite frankly I didn't have the emotional energy to deal with it. 

My story was different in that I did keep my bc secret from family until I had a plan and surgery date except my husband. The reason for this was my sister in law was dying the same week from a different cancer and family were already distraught. My boys had been visiting them regularly with us and had watched her deterioration. I didn't want people instantly thinking that was my future (which of course is what they did think once they knew )

My work buddies knew as I was there when I had my biopsy (I work as a Nurse) and when I got results and went home a blubbering mess. Work buddies prefer to just let you be as don't want all that emotional stuff and being Xmas lots were away anyway.

So I had one sister that was with me through it always. We are close and sometimes she was just there watching telly with me or getting me out the house post surgery or during chemo as I was really quite sick. I rarely discussed my real fears as I knew she just wouldn't cope with it. 

I did set up a private facebook group that I called "Kathys canxer journey"  and invited people in. The private group and photos aren't visible on my main fb site unless you are actually a member. It was  one place people could check in to see what was happening. I photographed my journey and reported in appointment outcomes etc. I added in links about surgery, chemo, side effects etc. So it was an education experience for people also.  I also set up fb messenger talk groups. Some friends. Some work buddies. One close group family. I could then report a little more detail and just vent. It meant people could then just provide text support when I needed it and that way I didn't need to individually update everybody. These things really helped me feel connected but not invade my personal home space...and I got to talk when I needed. It also kept family in the loop living far away.

When I was really worried about stuff I talked only to 1 sis and hubby or blogged on here. Once I knew where it was going I then blogged on fb about my scare and how I needed to deal with it privately. It gave people a real inside view of what bc was like for me.

We totally get you feeling overwhelmed by the sudden support. It's really hard to tackle but the fb thing might help. You might need those people really soon in a more physical sense once surgery and treatment is in full swing.

I hope all goes smoothly and think your camping escape with your horses was a brilliant idea. Actually explaining in a blog how that helped you to re-centre yourself and helped calm you might make people respect the person you are.

And we are here to listen to you vent when you need. Kath x

melclarity

@maureenz Firstly Hello!!! and Welcome!!! I think every single one of us who read your post totally GET IT!!!! Not one thing you said have any of us not experienced, felt or thought! So know it is so damn normal!! People mean well, but they dont get it to the complexity of what you just described. I hear you as I felt it easier to only tell on a need to know basis, I culled alot of friends i couldnt stand the pity. why?? how does that help? I prefer if you dont know what to say. say NOTHING! This is a great place to come and just vent or talk and even to learn believe it or not! 

There are some great suggestions on how to deal with it, so just wanted to say we hear you, we get it, and its NOT time for you to put others emotions feelings first...this is YOUR time and I worked that out at my last diagnosis. I put me above everyone else and I of course was nice about it, but really? NO do what is right for you and just do an all points bulletin to them saying, you need to deal with this, thank you for the support and when I need it I absolutely will call!! Youre not going mad at all, hang in there!! Hugs Melinda xo

brightspace

Hi maureen..here the kind hearts are ........ totally agree with the forest camp out only horses for company ..the real you! Agree with Iser and Zoffiel all the best Bright 

Brenda5

Gosh Maureen take a few breaths. Also get on here and contact your nearest breast care nurse who can work as intermediary with surgery and treatments and help you discuss what your needs are. http://www.mcgrathfoundation.com.au/OurMission/OurNurses/FindANurse.aspx


Like you your family is stunned and scarred so if its getting too much just tell them to back off just a little please. You are lucky to have horses who have a special healing soul for you. If you want a mastectomy then have it. My surgeon tried to get me to have a lumpectomy and radiation but I wasn't keen. To me that breast had failed me and mine were small too. I got left one off with no reconstruction which as it turned out was a good thing as on pathology the other side of the breast was starting to do funny things as well and my sentinel node was involved. I had chemo because of the node but no radiation. You get done whatever you think is right and talk to your  breast care nurse if you need someone to discuss it with, they are amazing!


Breast cancer is not a new thing and surprisingly a lot of women get it of all ages. Like drenching cattle we all get our treatments done and emerge out of the crush a little startled but good to continue life.

maureenz

Wow - thank you so so much far all your down to earth advice and support - you have no idea how better - or relieved- you have all made me feel - I will talk to my breast nurse re procedure - and surprisingly my son has jumped in and said we will do this together - though I am loath to burden him with anything he said it is a way he can feel useful and he is protective of me - I am feeling so humbled -thank you again for the warm helpful responses to my rant xx

melclarity

Maureen, thats so wonderful!!! I love that your Son will do that with you, just beautiful! and we are all here to anytime you need to chat or ask any questions. Big hugs Melinda xo

gingerninja

Hello and welcome @maureenz........

I too am very new to this site and the world of Breast Cancer, but I have to say you are in a wonderfully supportive and safe environment here in this forum.... I hope you stay connected here - I have found it to be a great comfort and be able to read the experiences of others and to know that the other members do actually get it!!

Like you I found that dealing with other's emotional meltdowns after I shared my news of diagnosis absolutely exhausting and frustrating....I know that people mean well....but I found it all very hard to respond to as my brain was still trying to absorb the news that I have cancer..........

I got extremely annoyed, and still do, with the comment "oh you'll be fine....just look at such and such - she breezed through her breast cancer".  the other dumb ass comments are in relation to how great it will be to have a new set of perky boobs!!!  I quite liked the boobs I had........

I don't have any pearls of wisdom as in how to deal with this - as we all do  things in our different ways, but I just want to say it is completely normal to feel peeved with our nearest and dearest who can sometimes hinder rather than help and you are always welcome to vent with all of us here!!

Wishing you well on the journey ahead and I hope you stay connected xx

Sal x

InkPetal

primek said:

I can remember talking with a friend (who is a Dr I might add) who was a blubbering mess on the phone and I ended up supporting her to cope with my breast cancer diagnosis. Lets just say I avoided contact with her a lot after that I quite frankly I didn't have the emotional energy to deal with it. 

I found being on the receiving end of people breaking down and acting like I'd just told them that they have cancer was more mentally exhausting than trying to process my diagnosis! Like, DUDE, thanks for the visit and I appreciate the mascara on my pajamas but come on. I love that you care for me so much and it sucks for you that your friend has cancer but could you please cry about it to someone other than the friend with cancer plz n thx, sry im a b* .

maureenz

thank you all again - off on the 5 hr trip to melbourne tomorrow to see my specialist again to chat about the procedure- and people have backed off (i think they got the hint from an unmanned phone lol) - then hopefully a sound sleep back home

you have all given me the courage to ask questions and start taking a little control - i really cant thank you enough for the support xx