This tuff cookie is crumbling
Melc503
Member Posts: 29 ✭
Hi I am 46 and diagnosed 2 weeks ago with invasive ductal carsonoma and DCIS on a routine mammogram.
Met my surgeon on Friday and having surgery this Wednesday. He offered me a mastectomy but said I can expect just as good a result with wide local incision and radiation.
I am normally the tuff cookie and I support others. Everyone comes to me with their problems or worries and I am very positive and proactive.
BUT man am I struggling. I have not cried in front of my family. ( I sneak up at night and cry for hours) I hate people fussing over me and would sell a kidney before I would ask for help.
Many advice for this control freak on letting people in?
Thanks heaps
Met my surgeon on Friday and having surgery this Wednesday. He offered me a mastectomy but said I can expect just as good a result with wide local incision and radiation.
I am normally the tuff cookie and I support others. Everyone comes to me with their problems or worries and I am very positive and proactive.
BUT man am I struggling. I have not cried in front of my family. ( I sneak up at night and cry for hours) I hate people fussing over me and would sell a kidney before I would ask for help.
Many advice for this control freak on letting people in?
Thanks heaps
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Hi Melc503 The toughest of us crumble under this. All I can say is the local mantra: breathe and take one step at a time. You're probably still reeling and running through the full gamut of emotions. I had ILC and started with a partial and sentinel node as it was expected that was all I needed (lobular is very sneaky, however). I discussed it with the surgeon that unless indicated otherwise after surgery, that was the best. Unfortunately, the path report for me indicated a mastectomy and axillary dissection. But ductal is a different beast altogether and more than likely, that's all you'll need if the surgeon thinks so. You'll know your path better once that path report comes back. Let your family know you're struggling - you'll need their full support to get through this. And tell a couple of key friends what's going on and ask them to be the gatekeepers of information so that you're not constantly getting flooded by well-meaning phone calls, etc and let people know that you don't want to be fussed over. I have a blog that I keep updated and most of my friends read that.
Come on here and talk to people if you need to - there's usually someone online as many of us don't sleep particularly well.3 -
Hello @Melc503
Welcome to our online forum. Im sorry to hear of your breast cancer diagnosis, it must have come as a huge shock for you.
You will find many generous members in our online community sharing and supporting each other here.
You may find the following links helpful in getting started.
Navigating the online community
BCNA Helpline 1800 500 258
If you have any questions, concerns or require any further information or support please call the BCNA helpline on
1800 500 258 to speak with a cancer nurse. The Helpline is open Monday to Thursday from 9 am till 5 pm and Friday from 9 am till 5 pm EST.
If you need some directions or get stuck please just message one of the BCNA online moderators @Giovanna_BCNA, @Marianne_BCNA, @Riki_BCNA, @Rosie_BCNA
Kind regards Giovanna
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Hi @Melc503
Welcome to the crumb factory. We get it.
Difficult as it is, try not to get too far ahead of yourself just yet. One of the really irritating things about BC is the shifting goal posts. Your treatment will be tailored for you, so be prepared for some changes as your medical team learns more about your cancer. Things may be simpler or more complex than you were expecting. Sorry, that doesn't sound too encouraging, but it pays to take things one step at a time as the evidence is uncovered.
You know, having cancer doesn't change your status on the independence scale. Many of us who have had to go through the whole performance, sometimes more than once, find you can get along with minimum assistance. You can feel like shit and still function, it's a wait and see situation. As before, you don't know until you get there. Generally people cope with cancer the same way they deal with any major upset in their lives; some immediately call everyone they know and circle the wagons, others put the blinkers on and some decide to plough on regardless.
From one control freak to another, it isn't a bad idea to keep the information you give out to a minimum to start with. Having to answer 'I don't know' really burns and can lead to some unwelcome speculation from those who will want to equate your situation with their great aunt Maud, or the woman three doors down. Don't go there until you have to. Once you have a treatment plan really pinned down, it's much easier to resume your 'in control' attitude (on the outside)
Good luck Mxx
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SO sorry to hear of your diagnosis @Melc503 - you've come to the right spot for good old fashioned understanding & advice!
The waiting is the worst part of it, I think - waiting for the initial diagnosis, waiting for the surgery, then the pathology ....
I think most of us start out as being a 'tough cookie' but you really DO need the support of your close family & trusted friends if they offer you support - so let them help you - and lean on them. I was pretty 'tough' until I had to leave my family as I went in to surgery ..... then I crumbled! The admitting Clerk gave me a whole BOX of tissues! LOL
I was lucky - as we live up the coast, we stayed with my brother & sister in law in Sydney before, during & after my surgery & for other checkups as well ... it was great not having to do the shopping and cooking etc, even for a few days now & then!
Do you have a family member or close friend to go with you to all your meetings - especially when you go for your results post op. They are an extra set of ears & good support for you. My sister in law was invaluable at my meetings - asking all sorts of intelligent questions that my numb brain would never have thought of!! I also recorded the meeting too - to go thru again afterwards, if I needed to.Re going to hospital - pack a pair of ear plugs & eye pads (like they give you on a long haul flight) as hospitals are incredibly noisey and have lights on 24/7 .... it may help you in getting some sleep!! These ones are particularly good. You squash them into a 'pencil size' tube then ram them into your ear - they expand once in there, to take the shape of your internal ear shape & block out all but the biggest noises (like smoke alarms!) So safe to wear at home, too!
Take a couple of magazines & a couple of treats to nibble on .... If you have a soft bra, take one with you, tho you may prefer to leave it for a few days, post op (no wire - like an Ahaa Bra or similar - Kmart & Best & Less have some beauties that won't break the bank.) BCNA also provide a Berlei Bra for post op recovery .... (see the link below)
Have you signed up for the BCNA Care Kit & Journey Kit yet? It includes a wonderful diary for not only recording your appointments - but your thoughts & questions for the surgeon, breast care nurse etc ..... take it with you everywhere!!
https://www.bcna.org.au/about-us/information-for-health-professionals/early-breast-cancer/
Ask any question that you may think of - don't rely on Dr Google - it may 'do your brain in'!
All the best for your surgery on Wed - we'll be thinking of you! xx4 -
Oh my goodness. I am so grateful for all the advice and support ladies.
I certainly came to the right place.
XX4 -
Apart from some drinks and snacks of choice, something mindless to read and/or watch, a packet of face wipes is essential - it seems like you no sooner wah your face in hospital and it feels greasy again!0
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Hi @Mel@Meliss
Welcome to the forum. As you can see already there is so much support, wisdom and warmth on here.
There's a lot of us tough cookies that crumbled a bit at the start (and every so often throughout) so don't worry about not being as tough as normal and put yourself first.
I had a lumpectomy, re excision for clearer margins. It was a combination of IDC and DCIS as well with L/node involvement so aux clearance also.
@Zoffiel is right. You do tend to deal with this as you do with everything else. Once you get over the initial shock that is. For me, when shit happens in my life, I renovate something! That's what I did the whole way through. Anything to distract my brain from itself and it's nasty habit of thinking the worst.
Waiting is the absolute pitts. Waiting for result, waiting for surgery, waiting for results, waiting for a plan and a bazillion hours waiting for doctors.
Keep talking on here. We all get it, and remember exactly how we felt when we were where you are now.
All the best lovely.
xoxoxo
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welcome @Melc503 , you've found the right place. We're all on here very much the same. BC, tuff, sometimes not feeling tuff, tuff and teary, and control freaks. But here we can let it all our anxieties and frustrations out and read up on some fantastic threads to help with advice on each stage of BC and beyond we're going through.
i spent one day last week lurking over all the radiation threads and armed myself with so much info I felt quite relaxed about fronting at my first radiation session .... and found it just as fellow bc women had described.
Take it all one day at a time. Focus on your lumpectomy on Wednesday. The pathology report from the op will give you and your team a treatment plan .
Hang in there girl. Sometimes it's good to let those closest to you know you're struggling. After all you want their support and often we show our brave side and wonder why no one is that interested or appears to care
Sending you hugs and hankies to wipe away those tears. You take care. XXXX4 -
Melc I had to nominate a 'gate keeper' during the initial diagnosis and treatment because I found the well wishing and many offers for help too invasive. I decided that I would only inform friends and family when I had definite outcomes - I stopped telling anyone about appointments and treatments. I just could not cope with friends and relatives telling me they were upset because I hadn't phoned them. When I found myself making a list of people I had to contact I realised that I was meeting the need of others - hello?! Over the years (7years of ongoing treatment and tests) I have learned to ask for help when I feel the need and at times I find the actual help a bit smothering. I have had some very helpful discussions with the Breast Nurse at the hospital and Cancer Council counsellors. There is no way but your way and tears are healing, they help the body relax. What practical and loving responses you have received. XXXXXBeryl1
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I didn't really do much in hospital but sleep. That is after another lady and I finished hurling our insides out as a result of gas anesthetic which it seems both of us are allergic to. All good, we have been face book friends for years since then.
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I also had difficulty showing my contribution and desperately needed my independence, struggled with asking for help and cried alone.
I dealt with this by creating a private facebook group of 'Angels'.
Women I trusted and I knew who would help me if I asked.
I was clear with my needs, I let them know what was happening and asked for space, but promised to ask when I was in need.
As things came up, I would tell the group.
They would decide who could help me best (lift to the hospital, help with housework etc) and they would schedule when to help.
I found it an easier way to ask,
less invasive to my privacy,
and they as a group, felt confident that they were helping as much as they could.
I am sorry you are going through this,
But the fact that you have already asked us for help, shows your inner strength.
And let those tears out, you are human, you will need the release, it's healthy to cry.4 -
Ah man @Melc503 - I HEAR you loud and clear - I am the absolute control freak! I was diagnosed in January with bilateral invasive lobular carcinoma and knew from the start it would be a double mastectomy for me - the first thing I said to my surgeon was 'well, actually if it's all the same for you, I'd like to wait until April for my surgery because that fits into my lifestyle a lot better' - LOL - and at the end of the day, he was fine with it! The fact that I was afforded the opportunity to have the surgery when I wanted to, made ALL the difference to my emotional state.
Letting people in is a major issue for me too! I decided right from the beginning to control the dialogue (there's that control word again!) and made sure that everyone understood that I wasn't interested in any doom and gloom - only Team Chirpy members were welcome. I'm very open about talking to people about my treatment (chemo now then radiation to follow) but make it clear that I'm doing fine and don't need help. Thankfully I'm tolerating the chemo extremely well and have been able to continue with work and life as normal - so I really don't need any more help than from my husband and kids in their 20s.
But there are definitely those incredible well meaning friends who text me to wish me well before each treatment and it still irks me! I'm being extremely well behaved because I know that they simply love me and they all come from a good place with a heart of gold - it's just that I'm such a private person that I can't get used to the fact that people know about my medical life all of a sudden! Drives me bananas!
You've definitely come to the right place - there's always someone on here day and night to offer advice or just lend an ear and the guys above have already given you so much gold. Take one step at a time - you've absolutely got this!
xxxxx
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Hi @Melc503. How did your surgery go? I hope you're resting comfortably and the pain meds are doing their job.
BC is a cruel mistress who schools us very early on about our illusions of control! I soldiered through two family deaths and tremendous upheaval in the five years prior to my own diagnosis. And when that happened last December it brought this previously tough cookie completely undone. My reserves were spent. It's been comprehensively hard and humbling on a deeply personal level.
From the very first appointment, my diagnosis, every medical professional I spoke to urged me to accept help when they could see how deeply resistant I was to that notion. It was my first lesson. Recognising that it was going to be a problem for me (and knowing all too well from what I'd witnessed over the previous two years that I was going to need help), I knew I had to take a deep breath and consciously accept help when it was offered. And sometimes that was literally what I did. Someone would offer help, the word 'no' would form in my mouth and I would stop, take a breath and say 'yes'.
The other thing I did was reverse the paradigm. If it was my friend who was going through this I would be desperate to help them.
I have not cried in front of my family (husband excepted). My circumstances dictated that it would be best not to (click on my profile for a summary), so I've done a shed load of camo crying in the shower, in doctor's offices, hospitals, and in bed at night. It's truly hard to keep it bottled up, not good for your mental health. Normally I think it's not a bad thing to let your kids see you upset, and there were a couple of times when mine saw some red eyes. Unless there are extenuating circumstances, give it some thought. It's not the end of the world to let your children see you battle adversity and then come through it. It will help them when they're adults facing their own battles.
Anyway, I hope this helps. Let us know how you got on today and who's helping you (or not!) in the weeks to come. K xox1 -
Hello ladies
thank you all so much I took everything you said on board and it has gone really well so far.
Had a long day on surgery day. In my opinion the hook wires were the worst.
My surgeon did an amazing job re-shaping my breast and nipple so it is certainly smaller now but still is a good shape.
I had 4 nodes taken and about a quarter of my breast ( lucky I had DD’s to work with)
waiting on pathology results until next Friday.
Only stayed 1 night in hospital and I would say moderate to uncomfortable pain. Not terrible at all.
I even took your advice and have my mum staying for a week and have let her and my partner do almost all the chores and cooking.
I cant believe I even said to my sister who I adore as she was coming over every day with her 2 small children that they are a bit loud and crazy to have over all day. I really love you all but unfortunately I need some quiet rest time for ME.
So thanks again gals I really appreciate the support. I am loving this site and feel like I am kicking cancers arse so far9
