Out of control and in shock

Sarnicad

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 3cm

have subsequently had more tests than I thought possible bone scans ct lumpectomy and more radioactive substances pumped in

slightly (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 3

have 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 that

cant 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

kezmusc

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

Sister

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.

arpie

I am So sorry to hear of your diagnosis & subsequent whirlwind of treatment & surgery @Sarnicad  - but great news that it wasn't in the nodes.  That's a good start.

It is always such a shock & like you, I was overwhelmed with tears, shock, anger - as I'd nursed my husband thru stomach cancer & chemo in 2010, so had a 'fair idea' of what was going to happen. 
 
You don't have to tell everyone ..... to this day, there are some members of my family (step siblings) that I haven't told when I was diagnosed on Jan 5 - only tell those who will be 100% supportive of you and your family.  Word will probably get out to the others with time - and by then, you'll have a better handle on things.  It sounds like your hubby is doing a wonderful job of supporting you, so that is terrific.

Yes, sleep is often a casualty - so chat with your GP about alternatives to help you sleep.  I find that wearing soft squishy earplugs helps me - tho I still have some crappy nights now & then.

As the lovely ladies have said above .... take a deep breath, take each day as it comes - try not to 2nd guess any of your treatment or get too worried about it (difficult tho it is!) Your medical team will be doing their best to get you back on track.

Some days will be good, some will be not so good .... we are on a tricky road that has lots of twists & turns.  We've all been there, so ask away ANY question - someone will have an intelligent reply - and you can contact any of us privately just by clicking on our name & then click 'message' if you want to ask any questions in private rather than on the forum.  That is also OK.

Thinking of you xxxx  

Sister

I fight a continuous battle with my phone's autocorrect - breasts teen should have been Breastscreen.

kmakm

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/p1

Hang 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

Finch

@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

primek

I had your diagnosis but 19mm and no nodes. I was so relieved all numerous scans were negative.  I had ACT-H chemo which is slightly more toxic to the heart but I read they have done clinical trials and found TCH was very effective with less heart issues. My T (taxol) was weekly for 12 weeks. 2 years on and cancer free. My niece. ..same diagnosis 14 years on cancer free with positive nodes initially.
It's not an easy road and sleep is awful but eventually you will hopefully start to sleep a bit and feel comfortable and settled into your treatment as much as anyone can. Kath x

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Sarnicad

Thanks all for your responses

i think there is just so much going on that its driving me nuts. Oncologist has said 4 weeks off work so there is that to be dealt with as well and the 4 weeks will start next Tuesday. So much of me is tied up in my family and work and it feels like I'm failing at both at the moment again stupid but where I am in my head O has also said I will be meeting with psychologist, dietician and exercise physiologist all in this upcoming hospital visit - don't think between tests and meetings and chemo that it is going to be very restful!!!!!

I am having to try to work out how to put me first but when you live with teenagers (2 x 17 and 1 nearly 15 yo) I think I'd be better at negotiating world peace.  I want life to be as normal as possible especially the 17 yos as both are in year 11 and doing one year 12 subject so are rapidly coming to the pointy end with another tough year ahead of them for next year.

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kmakm

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 xox

PS 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.

Romla

@Sarnicad I too have twin 17 year old - boys at home - my daughter is 24 and teaches in the country - she moved out 3 weeks before my initial diagnosis. My sons are doing year 12 now but we're in year 11 when I was diagnosed.I am retired teacher so that helps as I don't  have work pressure but spend a fair bit of time tutoring and teenage wrangling as hormones are rife ATM.

I have learnt over the years when times are tough to narrow my focus and shut down emotion to get through things. It doesn't mean I don't have them just I tend to leave them until the worst is over.

Re my kids I told them.whatbwasnhappening from the start and made it clear they could ask whatever they needed to when they needed to about my health. I learnt they weren't worried as they have seen me get thru things before and they regard me as strong/tough which I was surprised by but explains why I need to yell to get a hearing at times as they take a lot for granted and I have hung myself by being too much of a superwoman. I am working to dispel the myth as getting older - am 64 and yes I had menopause twins at 47 but that's another story.

I find teenage boys somewhat self centred and think mine have been cossetted  a bit too much but they can and are learning but not without a bit of aggro in the house. Mine need to be asked to pitch in effort but will eventually. They have casual jobs and food clothes and entertainment is now largely their costs as is petrol for their cars - the food is largely as they are difficult to feed and prefer junk food like Maccas.

Think sister may have organised her kids a bit better than mine as my husband and I role reversed for 12 years ie I worked and he was Mr Mum who was much.more.lenient around the house than I would have been. 

We are 20months post.my diagnosis and things are pretty much unchanged in our family life and the boys are doing well at school as well as entering social life independently. I have had other medical this year major eye surgery but they knew what was going on and were invited to ask anytime what they wanted to know. As a general rule they haven't asked for the reasons above but they know they can.

I also have a retired husband who has.been pretty supportive taking me to appointments and taking over washing cooking and cleaning when I couldn't - he is great at cleaning but cooking has been a bit basic but we haven't starved although a few vegetables would have been appreciated. He even has accepted ferrying me to the supermarket but uses shopping trips to add steps to his fitbit walking around the local area whilst I shop. 

You will get thru this stay open with your family about where you are atm, ask for help when you need it and don't expect your family to read your mind. Generally kids assume we are invincible and is hard for them to realise we are not and the same can be said for.husbands.

Sarnicad

We pretty much have kept to the facts and as much positives as we can. Had to delay telling them anything as they were sitting The GAT the week the hammer dropped!  They have had some questions that we answered as best we could. I've ordered the my journey kit today and the USB with teen resources on it as well. 

One of the 17 yos has high functioning autism which means we are constantly on his back about pretty much everything and constantly having to check his organisation (cause he has none) and nothing but routine routine and more routine helps with that. 

Ive already started teaching washing machine to the whole family hopefully it will stick with one of them. We have re started getting hello fresh meals that are easy cook and everyone of them can follow the recipes which gives us 4 easy meals a week. They are all busy teens work school work music and sport our house is completely mental the youngest is an elite gymnast training 16 hours a week plus musical plus two school bands plus an outside instrument plus acceleration at school - when I write that down it's not surprising I'm tired. He is busy but likes it that way. 

 Schools  have been great to date offering counselling and safe places for all of them. 

I guess im just being a typical mum and worrying about everything and wanting to control as much as I can

Romla

I think control is the issue as we're not in control and it's frightening. Easy meals are the go still teaching mine to turn on oven or washing machine. They are dab hands at scrambled eggs and cheese toasties but washing up after requires further nagging.
You will be ok but will have to accept their help and let them do more for themselves which I found hard as I liked to be in charge.
Breast cancer aside I am not enjoying year 12 or the transition to adulthood but gather I may not be alone but figure we'll get thru it with more than the odd bit of roof raising - but think thats teenagers. Just wait until they hear the new rules for next year when they are adults sharing a house with other adults who happen to be their parents - year 12 mollycoddling ends mid November . xo

kmakm

@Romla Mine have always been told that there's always a bed and food but their allowance stops when their last exam is finished. And if they're living here and working they'll be contributing financially. So none of it will be a rude shock... in theory!