Survivor mode

Quote_Queen_67

Hi there,

I have been recently diagnosed with bc and am still undergoing all the biopsies, CT Scan and Bone Scan - had this today, the rest on Thursday.  I am guessing this will inform the surgeon as to how bad it is?  Still thinking I will wake up from this nightmare!  Went to the doctor last week with a pain in my arm and what I now know is cording in my armpit.  Subsequent US and Mammogram (my first at 51) revealed lumps in both breasts and my lymph node.  

Keeping relatively calm but delivering the news to close family and friends is draining and alarming.  Still haven't told my kids (aged 10 and 12) - waiting til the weekend so they can take it in without the added pressure of school, etc.  Actually, any advice about telling children of this age would be much appreciated.  I am dreading this.  It was bad enough telling my parents.  My mum is flying out from the UK to help out with the children as surgery is almost certain, as well as all the other treatments.  

Going into work tomorrow to tell them (I only work part time - three days a week) but I love my job and my GP told me just yesterday I would probably have to give up for 8 months to a year - wondering how we will manage financially on top of everything else.

I am scared about finding out the extent of the cancer and don't really want to know anything about it but I know this is futile.  Haven't really had chance to grieve yet - just gone straight into survivor mode. Is this OK/normal?

So glad I have found this online group - you all sound so supportive - hope I can help someone on this journey too.

Afraser

We all fit in the reaction stages somehow but the order can be pretty mixed! Glad you have support, it's a testing time. Your doctor means well but reactions to treatment vary immensely, some of us worked full time throughout. Unfortunately it's almost impossible to know till you start treatment, so plan B is a good idea. Survivor mode sounds pretty good to
me, because that's your goal - getting through this and having cancer as a bit of your life, but by no means all of it. Grieving, rethinking  and adapting will all come in time, possibly not always at the best time but in their own time. So many people here will be able to share their own experiences and learning - with parents, children, doctors, friends - so ask away. There are no silly questions or for that matter inappropriate ones! But there well may be funny ones - a sense of humour keeps us all sane at times. Deep breaths, very best wishes. 

SoldierCrab

these might help with talking to your children... 

https://www.bcna.org.au/understanding-breast-cancer/talking-to-family-and-friends/telling-your-children/
https://www.bcna.org.au/understanding-breast-cancer/talking-to-family-and-friends/
https://www.bcna.org.au/understanding-breast-cancer/types-of-breast-cancer/

Canteen also have some great resources 
https://www.canteen.org.au/

I also sent you an inbox with lots of links on it .... and how to use the forum etc. 

@kmakm
@Sister
 might have some insight about talking with your children ... 

kmakm

Welcome to the forum. I'm sorry you've had to join us. I was diagnosed at 51 as well. Sucks at any age.

Well done on staying calm. Impressive! All reactions are 'normal' (whatever the heck that is!). I was beyond angry for several weeks. Put zero pressure on yourself to behave in any particular way. You will process what's happening to you at the right time for you. The only thing to be wary of is getting emotionally stuck at any point. Counselling can be useful at that point.

BCNA have this good page on telling your children about your diagnosis.

https://www.bcna.org.au/understanding-breast-cancer/talking-to-family-and-friends/telling-your-children/

My experience was that it was important to deliver the news in an age appropriate way (my kids ranged in age from 18 down to 9 at that point). I told them once there was a bit of a plan, a date for surgery in my case. My situation was a bit different but I found there was a great exhalation when I resumed some standard bit of parenting or other, to go and wash their hands before dinner, or something like that. I can't recall it now. It's really important to show them that their lives, and your parenting of them, will continue as normally as possible.

They all reacted differently and I had to be mindful to modulate my behaviour to each child according to their needs throughout my treatment.

It's easy to disappear into your head while you're going through treatment. Necessary sometimes. But I soon realised that in the absence of information my youngest in particular was having a big worry and filling in gaps, incorrectly of course.

So if you do tell them this weekend, tell them early in the day, so you've had a chance to establish some normalcy before they go to bed.

Oh and tell them that people will bring lots of food and probably lots of yummy things for them! My kids quite enjoyed coming home and seeing what had been delivered that day!

Hang in there. This stage is the worst bit. Hard to believe now, but once your treatment plan is underway, you'll feel better. Big hug, K xox

Zoffiel

Hi @Quote_Queen_67 telling family and other people is hard work, particularly when you don't have enough information to answer the barrage of questions you will face in the coming weeks.

Consider holding off telling work until you can say more than 'I don't know' 30 times a day or maybe tell your closest colleague or your boss but swear them to silence for the moment. Pick someone who you can trust to sensibly run some interference for you later because people can be a little speculative and insensitive once the news gets out.  Which is not in any way helpful.

You may have to take extended time off work, you may not. Three days a week might be completely doable,  it just depends what treatment you end up needing and how you react to it. For now it's a waiting game which is just excruciating.
Best of luck MXX

jennyss

Dear @Quote_Queen_67,

for you for this testing, waiting and planning 
from jennyss in Western NSW

Kiwi Angel

@Quote_Queen_67 welcome to the group. This is the worst time before u get a plan in place. The waiting sux. Big hugs xoxoo

Brenda5

The Ct scan and bone scan may not be all that bad. Yes there could be surprises pop up in them but mainly what they are looking for is good health in the liver etc so there won't be any hassles with using drugs on you and the bone scan is a record of how good or bad your bones are at the start of treatment. Years down the track they will take another bone scan to see if any medication has made you develop a break down in the bone quality. Treating cancer can be a bit of a juggling act between killing the cancer but not killing you. The scans are called 'staging' and they will be discussed on future treatment in a podcast between the surgeon, oncologist and radiologist. Then when they have a plan, they will tell you. Don't panic just yet. We're all here for you.

kezmusc

Hi @Quote_Queen_67,

Welcome to the forum lovely. 
 As you can see there is always a lot of warmth and great information on here.  No one else knows what it's like unless you've been there.
The waiting just stinks.  Getting through those foggy days of waiting for answers and some kind of plan is the absolute pitts. I remember waiting for my CT results.  That was the worst one, I was too scared to go back in and find out so I got my husband to ring first and sus it out before I went.

There is no right or wrong way to get through this.  You just do what you can day by day, hour by hour. Emotions swing from "yeah, I got this thing" to cloudy fog of doom which is why we call it the roller coaster and it's all perfectly normal. 

Whatever way you tackle it is ok.  Distraction can work wonders.  Just keep busy, anything to stop overthinking.  

I agree with @Zoffiel about waiting until you have some answers before you tell work if you can. I took three months off but I already had a month off planned before I found out so I just extended it because I could. I went back two weeks after my second chemo.

I remember being told at the start to pretty much write off the next 12 months of my life.  What a load of baloney.   I worked part time, ran my farm, went camping, rode my horse, partied in the bar with the cowboys, renovated etc etc etc. 

 Some days were pretty average but there was a hell of a lot that weren't. Plenty of people choose to work for financial reasons or purely because it makes you feel normal.

Everybody responds to treatment differently and what they tell you at the start can scare the heck out of you and be nowhere near what actually happens.

Stay in touch lovely.

xoxoxo

Quote_Queen_67

Thank you for all this support - I am feeling very cared for by total strangers who have been on this journey. What an amazing group this is!

Blossom1961

Hi Quote_Queen_67 You May not know anyone on here, but we are all family. Welcome lovely lady. I am sure you will find yourself very embraced here.

kmakm

We've got you @Quote_Queen_67. And when the time comes, you'll look after those who come after you. It's a beautiful thing. K xox 

Sister

Welcome to this site @Quote_Queen_67 .  You'll find a lot of support here.

I know most people have given you great info and resources but I'll chuck my 2 cents in.  In my experience, the scans you're having will give your surgeon needed information but the exactness (I know - not a word) of the cancer won't be known until the path report after surgery.  They will, however, dictate the immediate steps.

Cancer's not a joyful thing to have but it's really important to take one day at a time and try not let your mind wander too much into the what-ifs.  And try to stay away from Dr Google.  That said, there are a few sites that will give you real information.  Moose and Doc (or something like that) has some good explanatory stuff as does the UK BC site.  You can see my year of treatment by clicking on my name.

Re: telling kids.  I had no choice but to tell them straight away as I had to pick them up en route from Breastscreen to the GP.  They were 11, 12 & 15 at the time.  I have kept them informed of everything at every stage and told them that I will always do that.  I don't go into the what-ifs though - just the facts and then let them ask the questions.  They know that they never met my sister because she died young from this disease.  Keeping secrets can be so much scarier than the facts.  They have been a massive support for me in this.  My first surgery was on 21st December 2017 and one of my favourite memories is of the 3 of them lined up, peeling spuds for the Christmas dinner they prepared in it's entirety.  Who'd of thunk it possible?

There's many ways of telling other people but do it at your own pace.  For me, my husband told his family (I don't have any family who needed telling at that time) and I rang two key friends and asked them to contact other friends and be the conduit of information - I was having enough trouble getting through things without people constantly ringing me to see how I was.  This worked beautifully.  While I was in hospital, my husband set me up with a blog page so that I could keep people updated that way which was also a really easy way to do things.  I kept the settings private and sent the address to those who were interested.  I have found that it became a fantastic journal to sort my thoughts out and has become a record of the almost year of treatment.  

I stopped work from diagnosis in early December 2017 until after radiation in October 2018.  As the sole income earner for the family (and a paltry income at that), this was a major blow.  I was, eventually, able to access Income Protection from my Super fund.  Mine provides 3/4 income (after tax) but does come with conditions.  I never had any trouble being approved for it, just a heap of trouble getting them to do the processing of the claim to get the money.  My suggestion is to check your fund to see if you have this cover, or trauma cover, and once you've made your decision about work, to get on to it IMMEDIATELY.

Back to the kids... tell your kids' teachers, or someone in their school, as soon as you can so that they are aware of what is going on.  I emailed my youngest's teacher at primary school.  I was fortunate that I work in my two older kids' school so they knew what was going on, but as one was just starting there, we had some anxious moments as she was dealing with so much.  I did access the Well-Being team at the school and they were able to keep an eye on the kids for any difficulties they were having.  It may be worthwhile if you are having financial difficulties as well because many schools have a welfare fund for these situations to cover uniforms, fees, etc.

Take care.

Quote_Queen_67

Thank you!  Lots of positive advice there for me.  I am a naturally positive person so my tank is usually more than half full but I am feeling it being used up right now.  The blog idea is a good one - might think about that.  

I work part time so am not the major wage earner but we need my salary to supplement my husband's wage.  I know I have a few weeks sick leave stashed but I will end up taking unpaid leave I guess.  I think we will manage but it will be tight.

There are some awesome people on this site - so grateful for this!

Thanks again Sister!

SoldierCrab

@Sister
 income protection as part of super etc can you explain it to Quote_Queen_67

Sazbe

@Quote_Queen_67 firstly sending big hugs

Others have already given some great advice

I too am in the newly diagnosed phase and feel like I am also in survivor mode, so I can relate. I have shed a few tears here and there and find that the moments I do have to grieve actually make things easier. We all react and deal with things differently, and when we have kids we can't just collapse in a heap, or crawl into bed and refuse to come out. This is a good thing! However it is important to be kind to ourselves to fit in grieving as it comes up. Getting on with things can make you feel more in control, when everything can feel out of control. However as the shock wears off and realities set in it can feel overwhelming. So you are in the right place to gets lots of support with that.

I too still have to tell my kids aged 5 and 10. I waited till seeing the surgeon so I at least have a plan. 

I was also worried about wether I will be able to work, I can't really afford not to. My surgeon told me yesterday that if I want to I can still work. They try and support people either way, if they want to work or if they want time off. It will help if your workplace is flexible.

I'm glad that your mum is coming to support you.

I still have not told my parents, they live in New Zealand and I just can't bring myself to pick up the phone.