Where do I start? I recently changed GPs and was working on a general health check you know the one do these tests everything will be fine no drama - always has been. Trot off for a mammogram and then followed the chaos. Mammogram revealed 3 lumps still at yeah so what knew about those been there for 6 years one is a bit odd shaped yeah was last time too. Gp did urgent referral to surgeon again no ones stressed at this point. Biopsy done hurt like shit but it did last time too. Week later the hammer falls bc diagnosis her2+ es + and initially pr + lump on ultrasound measuring 3cmhave subsequently had more tests than I thought possible bone scans ct lumpectomy and more radioactive substances pumped inslightly (looking for the positives) better news on post surgery pathology only her2 and es positive and no lymph node involvement lump only 18mm but grade 3have had a busy week of appointments with oncologist and radiologist and more forms and more tests to come chemo to start 25/7 port insertion 24/7 along with echo TCH once every 3 weeks for 4 doses and herceptin by itself for a year 6 weeks radiation post chemo and then hormone therapy after thatcant deal with with telling people feeling overwhelmed tears at random times so worried about so much stuff most of it stupid can't sleep all night which is probably making other things worse

Hi @Sarnicad,Welcome to the forum. You will find a lot of knowledge, support and warmth here. We have all been where you are and the initial shock of diagnosis can't be explained to anyone that hasn't felt it.The up and down emotions are perfectly normal. The whirlwind of tests and scans, appointments and waiting...just awful.Good news that no nodes involved and you now have a plan.The thought of chemo is very daunting, but our brain definitely conjures up worst case scenarios. A lot worse than what it normally is.The random tears are par for the course. One minute, you're like, I got this and the next your are a babbling mess. It will pass. There is always someone on here no matter what time of the day. Lot's of us don't sleep well.As far as telling people goes, you don't have to right now. I let me husband ring close family and one good friend. He asked them to give me a few days before they rang. Breathe deeply lovely. Keep talking to us. One day at a time. One step at a time. You will get it done, you will be ok. Promise.xoxoxoxo

Hi Sarnicad. I had the same concerns. I have 18 doing VCE, 15, 12 and 10. The youngest two are my niece & nephew who I'm raising as their mother, my sister, died from breast cancer two years ago.I tried to stay as calm as possible in front of them; I cracked jokes and got cross as normal. It was as low key as I could make it. No matter how fatigued or crappy I felt I could still say "have you done your homework", "stop teasing your sister" etc.I can't remember who it was but someone here said don't underestimate your kids. They were right. When the chips were down, my 18yo son and 15yo daughter rose to the occasion and were magnificent. In between they were pretty normal.I'd advise being as open as possible with them about your treatment. They may not ask questions, and it's easy for us to get wrapped up in our own heads about it all. So tell the kids something like "I'm going to have a chemo that's going to make me feel rubbish for one week, average for the next and then reasonably OK for the third". That way they'll know broadly what to expect. Lead with the good news that there's no spread, that breast cancer is pretty well understood and that with their help you'll all get through. A family is a unit and this is a time when it's good for the unit to work together.It will soon become obvious when you're not up to cooking and doing the laundry etc. If they don't know how to use the washing machine, write some instructions and stick them next to the machine. Fill your freezer with labelled food and they'll soon work out how to defrost & reheat.And then when you say no to something, because you can't, because you're choosing to stay in bed, or go out for a facial, because you're putting yourself first, they won't fall in a heap.My husband has been incredibly supportive and he rallied the kids on numerous occasions, kept things on as even a keel as possible while I wasn't on deck and didn't let them get away with murder.I think it's good for kids to see their mums put themselves first every now and then. It's one thing when they're babies but it's quite different when they're older. How you conduct yourself through this time will have an impact on them all their lives. It's OK for them to see you hurting, it can build empathy, care and consideration. It will potentially make them more caring people.You can offer them some of the many services available to kids impacted by cancer. There's a list in the My Journey kit, and schools have counsellors available. None of my kids were keen but I did raise it with them several times and the youngest decided to chat to her school counsellor on a weekly basis which continues to this day.Lots of people will offer to help once the word gets out. I found it useful on the days when I was pretty much bedridden (of which there weren't too many) to have a girlfriend that the kids were used to seeing about the place, drop in and keep things ticking over for an hour or two. Not the hand wringing woe is you types, but the cheerful ones who can crack jokes and tease the kids a bit because they know them well.This is all very long winded, sorry! Look, it is what it is. You have to get treated and while there's no way to make it 'normal', your attitude in front of your kids will set the tone.You can do it, I promise, and you'll all get through it. Please don't hesitate to lean on us here. We'll help as much as we can. Kate xoxPS Your oncologist sounds amazing! Organising all those allied health services for you! I had to push and push to get recommendations and make all my own appointments. That trio will be a godsend in the months to come.

Welcome @Sarnicad . The diagnosis is overwhelming isn't it? One minute you're travelling along fine, making plans and the next, you're completely sidelined. I think it's so hard that at diagnosis most of us feel completely well - it's the treatment that changes how we feel. To repeat @kezmusc, get yourself a gatekeeper or two for passing out info - you have enough to deal with, emotionally. My husband helped with telling family. I told my manager at work, who of course had been aware of the breasts teen recall. I rang two of my closest friends (from different friendship groups) and asked them to contact others and to tell people not to call me at that stage - all if the info was passed through these friends. A little later, my husband helped me set up a blog and I have used this to keep people updated, as a kind of diary of my experiences, and as a document of my thoughts and emotions. I gave family, friends and colleagues the link for it - it's both private and public - it's off-search-engine but I don't mind who sees it if they are interested in my progress or if my experience can help them.You are not alone in this. This site has been a source of information, support, the odd laugh and a general sanity saver for me and many others across the country.Try to take things one step at a time - we're in it for the long haul.

Hi @Sarnicad. I'm so sorry you find yourself here but welcome.The beginning is the absolute pits isn't it? You've had the excellent news that there was no spread to the nodes, and now your treatment plan has emerged from the jungle of testing, always a good stage to get to.My tumour was 16mm and I had no spread. My first emotion was white hot anger (my bio will tell you why, not that we need a reason, cancer is enough...) that went for about three weeks and then I dissolved into tears for two months. I cried for Australia! Everywhere my kids couldn't see me, very randomly. Eventually it passed. There were still tears from time to time but now seven months down the track, I'm mostly dry! Don't fight the tears, they're evidence of huge emotion and they need to come out. Cathartic.I had TC chemo. It's hard but doable. Chemo has a shocking reputation that comes from the past, and from the outer reaches of reactions. While there are side effects in common we all react differently so don't go too much by other people. There are now very good medications that control nausea. You'll be given them as a matter of course but if you get troubled by break through nausea, or pain, or any side effect at all for that matter, don't hestate to contact your oncologist to get it under control.When I was diagnosed I told only the people in my house and only because I was going to be out overnight having the wide local excision. I didn't tell anyone else until over a week later after my son's big 18th birthday party, and my re-excision. And then I sent my husband to tell my parents and sister and I actually didn't speak to them for a week or so. I couldn't face it. I told my closest friends in confidence by WhatsApp, and the wider circle weren't told until after Christmas, over three weeks later, also by WhatsApp. You do what feels right for you. There's no right or wrong at all in this situation. This is happening to YOU, not anyone else, so don't stress. Truly good friends and family understand and won't mind. If people get upset about the timing of the news that's their issue, not yours.When you're ready, there's a really good thread here called TC Chemotherapy. I had this chemo starting in January, and then two other members, @Finch and @"Kiwi Angel", started it on the same day. So we have lots of info fresh in our minds if you ever have any questions or concerns. You can also use the search bar to find other references to TC.http://onlinenetwork.bcna.org.au/discussion/18193/tc-chemotherapy/p1Hang in there love. It sucks arse but we're all here for you, day and night. We'll hold your hand and you'll come through. We've got you. Kate xox

@Sarnicad sorry you've joined the forum , welcome my dear, take a deep breath. You've joined a great big club of wonderful women. You can chat and moan and tell it all as it is. We understand, we are with you. We've all been there at the very beginning of diagnosis like you and all taking our own path to be rid of this thing. I have similar, ER+, PR+, grade 3, 14mmIDC and 20mm DCIS, no nodes, only unlike you I'm HER- . Before diagnosis I thought all breast cancer was just that, but it's not, everyone is different, treatments are different. I had lumpectomy in February followed by TC chemo and currently undergoing radiation. Then onto hormone therapy. I won't be having herceptin.i remember my shock on diagnosis. I found my lump whilst doing some stretching exercises, went to the docs and then on for mammogram and ultrasound. I didn't think it was anything as I've had loads of cysts in the past. Also, I wasn't going to get cancer, right! Just wasn't going to happen to me.Such a shock when I was told by my GP. Before you know it, it's a rush for surgery and medical appointments and tests and more appointments and decisions and trying to digest it all. This will all settle down and slow down. Take a big deep breath. It's not in your nodes. You've got it early. That is great news. I was terrified about starting chemo, it seemed such a foreign place for me, the great unknown with all the scary things I'd heard about. Most can handle chemo quite well with the drugs you're given. Most of all you can jump on here anytime and ask and get great advice. Golly, there's a thread for those who are awake in the middle of the night. Lots of chit chat and lovely lovely ladies to keep company with. If you don't want to tell anyone - don't. You have to do what you want to do. If there is one thing I took on board when I was given advice is its time you put yourself first, do things that make you happy, all the small things and some bigger things. Look after yourself. You tell people when you're ready. In my case it didn't worry me, except I got very teary about telling my father and my adult children. Once I told them my husband and I opened a bottle of plonk and phoned around. By the end of our calls we were quite tipsy and probably sounded ridiculous but who cares. I use the Whattsapp app, I have group friends who I've kept in touch with and updated. It's been full on keeping friends up to date but one of the things I've found is how wonderfully caring people can be. We're all in it together. Mucking through. Sending you best wishes and take care. We are here for each other. Hugs xxx

Out of control and in shock | BCNA Online Network

55 Replies

Anonymous
Not applicable
8 years ago
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Me2
Member
8 years ago
Good evening wise and wonderful ladies. Im in a pickle again. My story is one of chaos confusion pain and rapid decline. In a nut shell 18mnths ago started the battle of all battles. Hit with all they could give me. Triple neg gal i am. November last year all done. All good. “The success story” of my oncologist i quote. Then march got a stiff shoulder n lymphodema occurred. Within a few weeks mt arm was huge my chest was red and hit and swollen and hard and argony. I had all the appropriate tests. All done in a timely professional manner. All the while i was not in the slightest frame of mind that anything was sinister. At the last i had a petscan. Three days later was told in no uncertain terms. I had masses of tumours all in breast area, where id had my mastectomy. Dozens n dozens wrapped around my nerve endings in front and behind my lungs, lymph nodes effect and some in left breast. This was one week before my 6 mnthly routine check up. I was sll clear at three mnths. I was so well, firing on all cylinders. Happy and content andcpushing on with “the new me”. They meeting with my oncologist told me. Inoperable as wrapped like cobwebs around nerve system, hence the increasing agony. So option was more chemo, more radiation AND maybe, we can get you tonsee xmas. Part of me died there and then. I have a beautiful family, beautiful husband, amazing daughter 29 yrs young and our precious 6 yr old grand daughter. Parents sisters friends the works. As im sure squilions of us do. Ive kept such a positive pro active slant on my situation from word go, determined to get through it. To be arrogant i gues never once thought it was going to kill me. I was already back to ny fundraising and volunteering rolls. Now, now what do i do? Ive got a good team if nurses, palliative and oncology, social worker, mcgrath nurse. All superb. Ive got all the right info on how to properly help all my family cope with my demise as healthily as can. But now, what about me? For the first time in all this hell im terrified. Im so so angry. Yes even ungrateful. Steaming filthy, why me? Not fair kicking n screaming howling!! Ive suffered depression anxiety n panic attacks throughout my life, but never once through this whole ordeal did my demons grab me. But now, raging fever of night panic overwhelms me. I cry n cry, but that only chockes me as my breath is short. Im really loosing my well built well supported foundations. Im furious. Im in antidepressant meds, and heavy painkillers, which all makes me feel ill. Gastric, constipated, nausea, no appetite, just hell has hit with 4 weeks. Whats even more ridiculous ive ranted on here, now realising im probably making some one rlse feel yuk! Which was not my intention. So i suppose i shall continue. Can anyone tell me firstly, does it happen to them, secondly, how the hell do tou walk around of a day with this living hell in your mind 24/7. ? Everyone says im doing well and im “so amazing” honestly? What rot...what choice do we have but yo keep on keeping on. Ive always said there are a lot worse off than me. Ive raised my girl, i dont have little children i have good support, but that doesnt cut it anymore. Im pissed off!!!!! And i hate feeling this way, especially when my days are on a count down, i dont want to waste any more than i have to being sick or unhappy. I want to say in advance how very grateful i am to all you lovely kind ladies who take the time to read my twaddle. It really is somewhere you can vent. It truly is a blessing. Love and light yo you all. ❤️
Anonymous
Not applicable
8 years ago
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Fletch
Member
8 years ago
Thanks everyone.
Romla
Member
8 years ago
Hi @Fletch and welcome. Glad you found us.This is a great spot to get support ,and share laughter and tears .It is also a fount of practical tips and knowledge.Ask whatever you want whenever you want as there is always someone online - there are no dumb questions it’s just dumb NOT to ask , contribute too when you want to about what you have learnt - you have just found a whole lot of new friends. xo
Sister
Member
8 years ago
Welcome @Fletch. I stalked this forum for a few days before jumping in on another newbie's post (can't remember who, now) and introducing myself. It has been an emotional lifesaver for me as well as providing an amazing array of first-hand information from which I have been able to prepare myself or make choices, such as whether to get a port or not (btw if you're having a significant amount of chemo, I would definitely recommend it). I didn't expect chemo to be on the cards originally, either. What started as a partial turned into a mastectomy and node involvement. I also have primary and high school kids - 3 of them. I would suggest being honest because secrets can be far scarier than dealing with the known.

I had 4 x 3 weekly AC and I'm coming up to the last of 12 x weekly Paclitaxol. I won't lie to you - it's been crap (a statement at which my surgeon laughed as he's still waiting for someone to say it's fine) - but it is an achievable marathon. As @finch said, once you know your own regimen we can help you more. I go on to rads in about 4 weeks. Good luck with things and come back whenever you need some sanity.
Finch
Member
8 years ago
@Fletch , I had four treatments three weeks apart . I was absolutely terrified before the first one. It was so good to get that out the way. I found I had most of the side effects but not too severe . It was doable . Do you know what chemo you'll be taking? Once you find that out you will be able to start a thread or read previous threads that apply to that particular chemo regime and we can help give you more of an idea what to expect. Xxx
kmakm
Member
8 years ago
You're never alone here @Fletch. There's no such thing as a stupid question, you'll never be told anything you feel is silly, you'll even have a laugh, and there's almost always someone else awake when you are in the middle of the night. We've got you. K xox
Fletch
Member
8 years ago
Hi Finch, Thankyou so much.x
May I ask what your chemo experience was like?
Finch
Member
8 years ago
I was the same as you @ Fletch . I had clear margins, no nodes 14mm grade 3. I wasn't expecting to have chemo until pathology came back after my lumpectomy. So a bit of a shock . Chemo starts once you've healed after surgery. I've finished chemo and presently in the midst of radiation. All the best and take care. Xxx

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Out of control and in shock

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